Fresh out of graduate school, I was in the first rotation of my internship at the Washington DC Veterans Affairs Medical
Center (DC VAMC). The rotation was in the nursing home care unit, where the VAMC had an amazing music and movement
therapist. The therapist, who was previously a professional dancer until a career-ending car accident, was working with
a dementia group. The residents within the group were completely introverted; each patient was in his or her own world,
disconnected from one another.

Music and the association to brain

In what was – and remains – a pivotal moment in my life and career, the therapist put on music. As soon as the music
began, a gentleman stood up and began waltzing with the therapist. The two waltzed for the entire song, and soon as the
music ended, the resident went back to his seat. He immediately curled back into himself; whatever the music had
released within him seemingly evaporated as soon as the song concluded.

It was at this moment that I understood firsthand the brain’s strong association with music; few activities stimulate
the brain in the way that music does, as music travels along different pathways than other forms of communication. Henry
Wadsworth Longfellow said, “music is the universal language of mankind” – and I have thought of this quote often in my
career as a licensed clinical psychologist. Music can have a tremendous impact on healthy aging – most critically, a
person’s cognitive health. Even for our elderly population, music can have significant positive health effects both
physically and emotionally.

Music is a medicine with no side effects

Music can be the best medicine, and unlike nearly any other medication, it has no bad side effects. It has the proven
ability to lower stress (cortisol) levels, change and improve mood, increase levels of motivation and productivity, and
connect us socially. Research also shows 1  that music has the power to lower blood
pressure, decrease anxiety, reduce our perception of pain, and improve sleep quality, mood, alertness level, and memory.
Listening to and playing music also increases2 the body’s production of the antibody immunoglobulin A and
natural killer cells – the cells that attack invading viruses and boost the immune system’s effectiveness.

Even for young and healthy individuals, a “memory playlist” including meaningful songs from childhood, adolescence, and
adulthood can be beneficial to one’s cognitive health long term. To develop a memory playlist, research popular songs
for certain times within your life, and select those that resonate most with certain memories.

Related Content:  The Healing Power of Music in a Physician’s Life

It is also important and beneficial to listen to new music and styles outside of normal listening choices; like any
other activity, listening to only a few songs on repeat doesn’t create the same opportunities for growth. New music
creates cognitive challenges that familiar music does not – and that unfamiliarity forces our brains to work to
understand the new sounds and rhythms.

Music’s association with cognitive health 

The human brain has a strong connection to music. Music engages the brain in unique and powerful ways and provides a
“workout” unlike any other activity. Music is fascinating because it’s complex, and it taps into memory and the brain in
a way that very few other things can.

For example, the very ability to listen to rhythm and identify patterns within music requires different skills from our
brain than almost any other activity. As noted by a researcher at Johns Hopkins University3, “music is
structural, mathematical and architectural. It’s based on relationships between one note and the next. You may not be
aware of it, but your brain has to do a lot of computing to make sense of it.”

Music and memory

For all of us, music can have a powerful impact on memory and tap into strong emotional reactions. For seniors – even
those with cognitive challenges and deficits – music can trigger memories that cannot be accessed in other ways.
Music can also improve cognitive processing speed. Research suggests4 that listening to or singing songs can provide
emotional and behavioral benefits for people with Alzheimer’s disease and other types of dementia.

Musical memories are often preserved in Alzheimer’s disease because key brain areas linked to musical memory are
relatively undamaged by the disease. In these patients – much like any other person – music can relieve stress and
reduce anxiety, depression, and agitation. Similar benefits are seen in stroke patients5: music therapy helps through mood regulation,
improved concentration, and changes in the brain to improve function (neural reorganization). Music can even result in
physical benefits including improved arm function and gait.

Music and the aging population

Though music is beneficial to people of all ages, it is a critical but often overlooked tool for our aging population.
As with anyone, music can help recall iconic memories, and revisiting those is incredibly beneficial for brain health.
There are also several apps and programs that allow seniors to test out a new instrument – such as playing the piano,
for example. When residents in long-term care facilities are afforded the opportunity to try and learn something new, it
not only helps with boredom and isolation challenges but there are also brain benefits to increasing exposure to
something different.

Related Content:  Science Shines a Light on the Evolution of Music and Language

From one long-term care facility to another, the incorporation of music within a resident’s everyday activities can
vary. Some facility activity directors are more proactive and played music for residents even during the pandemic when
musical guests weren’t allowed on-site. Now that the COVID-19 pandemic has finally subsided within the U.S., many
long-term care facilities are bringing back musical performance guests for their residents.

Playing music during other activities – such as
puzzles or manicures,
for example – can even have a positive impact
on resident happiness, engagement, and cognitive health. 

Music for seniors

To increase seniors’ exposure to music, some organizations – such as Music & Memory6 – help facilitate access to music for seniors in
nursing homes. There are also several ways to volunteer and donate so that seniors – particularly those who are
low-income and cannot afford to make purchases of their own – have increased access to music through smartphones,
tablets, or radios.


References


  1. Keep Your Brain Young with Music, Health. John Hopkins Medicine.

  2. Amy Novotney. Music as medicine, American Psychological Association. November 2013, Vol 44, No. 10.

  3. Keep Your Brain Young with Music, Health. John Hopkins Medicine. Health

  4. Can music help someone with Alzheimer’s? Mayo Clinic

  5. Music therapy helps stroke patients, Science Daily, Mar 2020.

  6. Music and Memory. https://musicandmemory.org

 

 

Unless you start your own practice after training, you will be signing an employment contract. The contract is critical in bridging the expectations of you and your employer. It also gives you the chance to lay out what you want from your employment.

Your contract is composed of a number of important clauses and provisions, and it is possible that not all of them will work in your best interest. If you see any of these 8 concerning contract items when reviewing your contract, it is probably time to negotiate.

8 physician employment contract items you need to know about

1. Unclear work expectations

There are many potential pain points in any working relationship. They include:

      • work schedules
      • office locations
      • call obligations
      • patient allocation
      • research time

In many cases, the contract will have ambiguous parameters for your actual hourly work expectations. It may state something as simple as “full-time” or give a minimum hourly range per week.

Like many contractual clauses, these hourly/shift expectations should be clearly outlined with objective parameters in your contract. You do not want to be blindsided by shifts that last four hours longer than you originally expected. And you don’t want to be required to work on holidays when you planned to have those days off.

Work expectations may seem basic. That is why they often go overlooked and why they deserve to be given close consideration.

Related Content:  Occupational Burnout: What Is It And Who Is At Risk?

2. Unreasonable non-competes

Most physicians who have been through the employment contract negotiation process have been warned about non-compete clauses. A non-compete restricts you from working within a certain geographic area after your contract terminates.

A typical radius would be anywhere from 2 to 50 miles. However, this will be highly dependent on the setting of your place of employment (i.e. rural vs. urban). If a non-compete restricts you from practicing within a large radius (50 to 100 miles), especially in a densely populated area, then you should consider negotiating these terms.

Also, the duration and scope of restriction should be reviewed to ensure they are in line with market standards. Some states have prohibited non-competes on physicians. In that event, the non-compete should be removed from your contract entirely.

3. Delayed benefits

Benefits are a huge part of what draws many physicians to an employed position. In your contract, an employer should offer you a benefits package that includes all or most of the typical components, including:

      • health insurance
      • disability insurance
      • paid leave
      • a retirement plan

These benefits should take effect when you begin your employment, but, in some cases, there can be a delay before you are eligible for certain benefits. Going without insurance coverage for any span of time can be incredibly risky therefore COBRA costs should be a topic of negotiation.

Related Content:  How Much Disability Insurance Do Doctors Really Need?

4. Where is the tail coverage?

There is a chance you will get sued after the termination of your employment for an incident that occurred while you were employed with the same organization. If your former employer did not offer you tail coverage in your contract, it is your responsibility to pay for this insurance.

The cost of tail coverage will vary depending on specialty.  However, many times, it is more valuable than a signing bonus and should be reviewed carefully as part of the compensation package.

5. Unrealistic incentives

Most employers use some variation of a production bonus structure to reward your productivity. Production bonus systems can be based on the following:

There are pros and cons to each of these systems. It is important, however, to ensure that the targets provided are attainable and fair. Having access to market data is extremely useful when negotiating these terms.

6. Termination language is unclear

Every contract will feature a termination section that will spell out potential causes for the termination of your employment. This section should not be so extensive as to overwhelm you with what might get you fired. However, it should provide a realistic view of the reasonable causes.

This sets a clear expectation for how you should practice within the organization’s framework. And, in the event of your termination, it may be useful in filing a wrongful termination suit. The contract should provide termination procedures for both parties to be equitable.

7. Indemnification clauses

An indemnification clause is a contract clause where one party is responsible for losses incurred by another party – in this case, the organization employing you. Indemnification clauses are important. They should be reciprocal for both parties in the contract.

Your employer will not want to be responsible for losses caused by your negligent actions. And, you should not assume the risk for their negligence either.  Try to negotiate your way out of a one-sided indemnification clause which may make you responsible for damages which your malpractice insurance cannot cover.

8. Intellectual property

Do you have an interest in developing intellectual property?  What about creating a social media following? Your contract terms should be clear about whether the employer has any right to the ownership and revenue derived from the creation of intellectual property by you during the term of your employment.

Related Content:  Healthcare Recruiting in the Age of Technology

The bottom line

Whether you are negotiating your first employment contract or your 10th, it is important to read the fine print of the contract and seek expert legal advice if any part of it is unclear.


Love our content?  Want more information on Physician Shortages, Recruiting, and Work-Related Stress?  SIGN UP FOR OUR WEEKLY NEWSLETTER HERE**


 

This post was first published on March 8, 2017. It was updated by the author on September  13, 2019 and July 20, 2021

So God created mankind in his own image,
    in the image of God he created them;
    male and female he created them
.

Genesis 1:27 New International Version

Years ago, when I was a freshman at Stanford, I acted in a few college plays. One of my favorite roles was E.K. Hornbeck, the cynical wise-cracking reporter in Jerome Lawrence and Robert E. Lee’s drama Inherit the Wind1, about the Scopes “Monkey” trial of 1925. In this landmark case, John Scopes, a schoolteacher was put on trial for teaching Darwinian Evolution in a Tennessee high school, spurring a national conversation on the role of religion versus science in public education.

In the very last scene of the play in the narrowing beam of a spotlight, the Clarence Darrow character, Henry Drummond, picks up a copy of The Origin of the Species by Darwin in one hand and the Holy Bible in the other. Like a human balance scale, he hefts aloft each book, arms outstretched, and compares them briefly. He then dramatically slaps them together before dropping them both side by side in his briefcase – the spotlight fades to black. It is a very satisfying theatrical moment, but what is it actually trying to say?

Why the Appendix?

With all due respect to the Bible, and not to be blasphemous, in my mind, there is no comparison. If man was created in the exact image of God, so many things need to be explained away. For example, why the appendix? As a physician who spends an inordinate amount of time at all hours of the day and night anesthetizing patients for appendectomies, I have strong opinions about creationism versus evolution by natural selection.

If I had to choose just one anatomical example in favor of Mr. Darwin, it would most certainly be the human appendix. Of all the ill-tempered, crazy things that the God of Abraham is credited for having intentionally done in Genesis 1:27, placing this useless and trouble-making stump of flesh at the beginning of our colon has to be near the top of the list. 

In our ancient pre-hominid incarnation as small ground-dwelling mammals, the appendix may have played a more useful role, as it does in modern-day rabbits, rodents, and other such buck-toothed chewing machines. There are several theories about what the appendix actually does. One theory posits that the appendix is a reservoir of beneficial bacteria, allowing mammals to ingest all varieties of fibrous and impossible-to-digest foods.

Recent Discoveries

More recent research has discovered that the appendix contains a large collection of specialized lymphoid tissue, perhaps meditating intestinal immunity against pathogens. Despite this potentially rehabilitating bit of information, the relentless march of genetic progress via natural selection, random as it is, has largely relegated the human appendix, along with other vestigial structures such as the coccyx, the erector pilae muscles, and the plica luminaries2 to the trash heap of human appurtenances. Most people do quite well without it. 

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It would be nice if the appendix just minded its own business, and quietly did whatever lymphatic thing it is doing and didn’t trouble us, or just continued to simply fade away into non-existence. But like an unsolicited sales call, or worse a Nigerian Prince phone scam, it occasionally and most inconveniently interrupts an otherwise pleasant trouble-free life by making its presence uncomfortably and sometimes dangerously known.

Appendicitis is a medical condition in which the appendix becomes infected and inflamed. Many people will develop appendicitis at one point or another in their lifetime. About 250,000 cases of appendicitis3 occur annually in the United States, and the lifetime risk of an appendectomy is estimated at 12% for males and 23% for females. It typically affects those under thirty, however, it may occur at any age. 

Historically, the diagnosis of an inflamed and burst appendix was often a death sentence. Its rupture causes exposure of the contents of the bowel to the unprotected inside of the abdomen resulting in a condition known as peritonitis. This can lead to overwhelming sepsis4, a critical life-threatening situation due to a breakdown of the protective lining of the intestine and gut bacteria entering the bloodstream.

Prior to the invention of powerful antibiotics, sepsis was almost always fatal. Even with the wide variety of medications available today, including antibiotics, blood pressure supporting medications, and ICU care, sepsis is still a leading cause of death in hospitalized patients. Fortunately, most cases of appendicitis are caught well before the appendix ruptures. With timely diagnosis and treatment, appendicitis is an easily treated medical problem – usually surgically.

History of Appendicitis

The first recorded appendectomy was performed in 1736 by a French surgeon, Claudius Aymand, who operated on an awake eleven-year-old for an appendix perforated by a swallowed straight pin. In 1804, the only person to die on the entire Lewis and Clark expedition was Sergeant Charles Floyd5, due to an attack of suspected appendicitis.  At this time surgical anesthesia did not exist save for a shot of whiskey and a stick to bite on, nor did reliable intra-abdominal surgery, and there were certainly no antibiotics to be had at any price. It wasn’t until the latter part of the 19th century with the advent of general anesthesia and more refined surgical technique that it was possible to treat and cure appendicitis.

In my family, both my wife and my daughter have had appendicitis followed by emergency surgery. Dana had hers in the first trimester of her third and last pregnancy with our youngest and only daughter Kate. She, in turn, had her bout of appendicitis at the tender age of four.

Dana’s appendicitis went something like this – She woke up in the middle of the night with nausea and a vague pain around the area of her belly button, and she jostled me awake to tell me about it. Given that she was pregnant, I wasn’t too concerned, as it is pretty normal to have a variety of abdominal complaints in the first trimester. I do remember being tired and cranky, however. “It’s just gas, go to sleep!” I grumpily said, rolled over, and fell asleep. But Dana could not sleep.

Despite sitting in a warm bath for the rest of the night, she felt worse in the morning. She vomited once and her pain had now moved to the right lower side of her abdomen. She did say she felt a little better after throwing up. This re-assured me despite the fact that the pain of appendicitis sometimes improves a bit before the condition gets much worse. Deep down I knew this, which brings me to the three “D”s of diagnosis.

The Three “D’s”

As is the case in many doctor’s families, these three “D’s” are critical in identifying any domestic medical problems that may arise. The first “D” is “downplaying” of the complaint. “Are you sure you’re really sick? Cause a lot of my patients are, and you don’t seem that sick to me…” This is a common phrase heard in mine and many other physician houses, and I am sure my family is definitely sick of hearing it.

The second “D” is for denial. While for a brief second, I did consider that Dana’s constellation of symptoms might be appendicitis, I was far more worried about an ectopic pregnancy6 as that was entirely possible given her gestational age of ten weeks, a common time for such a problem.

The third and final “D” is for “Dummy”, which is what I called myself when Dana was actually diagnosed with a nearly ruptured appendix several hours later when I was long gone to the hospital and working on my own patients.

Hindsight

Rather than trusting my medical instincts and relying instead far too heavily on my personality of always looking at the bright side of things, I did in fact leave my pregnant, sick wife at home with two small boys to take care of. It was not my proudest moment as a doctor, a father, and most certainly a husband.  

Fortunately, we have an amazing friend, Gina. We call her Saint Gina. She is a nurse and a super-mom, and as practical and able as they come. Soon after I had left for work, Dana called her to look after our boys because she was feeling too sick to get up. As soon as she arrived, Gina took one look at Dana and said, “You are going right to the hospital!”

In retrospect, it is good advice for physicians to leave the diagnosis and treatment of family members to others far more objective, and thus more competent. Once in the emergency room at the hospital, a surgical consult and an ultrasound of Dana’s abdomen revealed both a healthy intrauterine pregnancy and a grossly swollen appendix ready to burst. In many cases, a CT scan is also indicated, but this was held due to the fact that she was pregnant. 

Most appendectomies are done using laparoscopic surgery7 under general endotracheal anesthesia. Dana underwent an uneventful open appendectomy under spinal anesthesia in order to minimize both exposure to systemic anesthetic agents and to perform the surgery with as little disruption as possible to our developing fetus that eventually became our lovely daughter Kate. 

Dana chatted comfortably throughout the surgery with the anesthesiologist, one of my partners at UCSF, and she recovered perfectly. Six months later Kate was born, a healthy and beautiful baby girl. As luck would have it, young Kate would soon follow in her mother’s footsteps.

Kate

Early one evening when she was four years old, we decided to see “Harry Potter and the Chamber of Secrets” at our local theatre. She had been feeling a little poorly for most of that day and was a touch irritable. For Kate, irritable meant that she smiled only most of the time rather than always, so I thought a movie would cheer her up, and off we went. 

She sat through the movie about young wizards and witches “spellbound” with the film, but I do remember noticing that her hand seemed a little warm to the touch, and she wiggled around in her seat every now and then like she was trying to find a more comfortable position. I also saw her grimace and stiffen a few times when she did move. What really got my attention, however, was that she turned down an offer of candy and popcorn, so I knew something was really wrong. As we walked up the aisle at the end of the movie, she walked a little stiff-legged and was unusually quiet. By the time we got home, I could tell she felt sick. 

I laid her down on the couch in the family room and proceeded to play surgeon. “Does your tummy hurt?” I asked. She nodded. “First it hurt all over and now it hurts here.” She pointed at the spot in the lower right corner of her abdomen called â€œMcBurney’s point”8 named after the surgeon who initially described the signs of appendicitis. Textbook answer. “Does it hurt more when I press, or when I let go?”  I gently pushed then released the spot to which she pointed. She winced as I let go. This sign indicates an inflamed appendix and a resultant sensitive peritoneum, the lining of the abdominal cavity. With a sinking feeling, I knew we were going to the hospital. I could fool myself once, but not twice. 

The ER

It was now late in the evening, and the emergency waiting room at our local hospital was totally empty. Literally, crickets. Nevertheless, we sat there on the hard plastic chairs under the harsh glare of the fluorescent lights for what seemed to be an eternity.

Finally, I couldn’t take it anymore and in my best doctor voice using every bit of medical jargon I could muster, approached the intake nurse and said, “Listen, my daughter is febrile, has peri-umbilical pain that has localized to the right lower quadrant, has rebound tenderness and is guarding. Could we please see the doctor on call – now?” The last word “now” was perhaps a little too emphatic and surgeon-like. She looked at me, her expression narrowed, and with a voice dripping with condescension said, “My! We are using big medical words, aren’t we? Are we a nurse or something?” I resisted the urge to escalate and replied in as level a Clint Eastwood voice as possible, “No, we are a doctor or something. Should I use smaller non-medical words?”  I was being a total jerk but I didn’t care. This was my daughter after all.

The Surgery

Once in the ER, a quick urine test was negative for infection and a blood test revealed a high white blood cell count. Ultrasound again clinched the diagnosis.  Kate was a trooper through it all, bravely enduring a urethral straight catheter and a needle poke for a blood sample without so much as a whimper. Because our local hospital had neither pediatric surgeons nor dedicated pediatric anesthesiologists and I must admit, I felt more comfortable on my home turf, I called my friend, Mike Harrison9, one of the best pediatric surgeons in the country, who came in from home and saw her immediately in the ER at UCSF as soon as we got there.

The surgery was quick and went well. Her appendix was nearly ruptured, but like Dana’s, we caught it in time. I remember thinking to myself during that agonizing wait after the anesthesiologist put her to sleep in my arms, and the hour or so later when I saw her in the recovery room, that I was so lucky to live in an area with so much choice and talent available, and that I had good insurance, had the ability to help manage her care and to be there for my daughter. Not everyone in this country is as fortunate and I knew that full well.

Lingering Memories

It is truly amazing that such a small, insignificant vestigial tube of flesh can cause so much trouble, but it most certainly does. Dana remembers her appendectomy as the time that our two boys, then age two and four were given free rein in the kitchen and on the computer. As she lay in bed suffering waiting for St. Gina to arrive, her doctor husband was taking care of his own patients instead of his ailing wife. Unsupervised, they went to town on the snack drawer and primed with sugar, they printed hundreds of pictures of Pajama Sam, Sly Fox, and Putt Putt the talking car, heroes of their favorite “Humongous Entertainment” games. 

Kate remembers enjoying the escapades of Harry Potter and especially Hermione Grainger a lot despite the pain in her stomach. She vividly remembers her late-night trip to the hospital where daddy worked and the popsicles after surgery.

I remember being humbled and so thankful that we live in a time and place where we have immediate access to such wondrous medical technology, that we have amazing and supportive friends and colleagues, and that an appendectomy is considered minor surgery. Though perhaps I should reconsider that final thought, as minor surgery is always something that happens to someone else.

References


  1. Inherit the Wind is an American play by Jerome Lawrence and Robert E. Lee, which debuted in 1955.  Wikipedia. https://en.wikipedia.org/wiki/Inherit_the_Wind_(play)
  2. Heather Scoville, 4 Vestigial Structures Found in Humans. ThoughtCo., Update Aug 2019. https://www.thoughtco.com/vestigial-structures-in-humans-1224772
  3. D G AddissN ShafferB S FowlerR V Tauxe.  The epidemiology of appendicitis and appendectomy in the United States.  Pub Med, National Library of Medicine, Am J Epidemiol, 1990 Nov;132(5):910-25.  https://pubmed.ncbi.nlm.nih.gov/2239906
  4. What is sepsis?  Centers for Disease Cotrol and Prevention.  https://www.cdc.gov/sepsis/what-is-sepsis.html
  5. Charles Floyd (explorer), Wikipedia.  https://en.wikipedia.org/wiki/Charles_Floyd_(explorer)
  6. Ectopic Pregnancy, The American College of Obstetricians and Gynecologists. Women’s Health. https://www.acog.org/womens-health/faqs/ectopic-pregnancy
  7. Appendectomy, John Hopkins Medicine, Health https://www.hopkinsmedicine.org/health/treatment-tests-and-therapies/appendectomy
  8. McBurney’s point, definition.  The Free Dictionary, Medical.  https://medical-dictionary.thefreedictionary.com/McBurney%27s+point  
  9. Michael R. Harrison, M.D.   https://surgery.ucsf.edu/faculty/emeritus-faculty/michael-r-harrison,-md.aspx

As they get older, many people worry about the condition of their brain. They fear their brain will no longer be as sharp as it once was. The thought of losing the cognitive ability they had in their youth feels like losing themselves.

You may have noticed, though, that it does not happen to everyone.

Many seniors remain sharp and attentive even into their eighties and nineties. But what makes them so lucky? How can we ensure that we, too, maintain mental clarity into old age?

Some say that it is genetics, that some people are just born that way. Yes, there might be a genetic component, however, there is much we can do to combat the effects of time on the brain.

Unlike the other organs of the body, the brain has the ability to change itself, to continually rewire and grow its neuronal connections, an ability called “neuroplasticity.”1 By taking advantage of and nurturing this ability, we can give our brain the gift of longevity. Here are some tips for that, along with some exercises to help you:

1.   Learn Something New

Too often, learning is thought to exist for the younger population or for obtaining a particular job. However, lifelong learning is one of the best ways to ensure brain health into old age.2  In this sense, the brain is a lot like a muscle. If you lay in bed or sit around all day, your muscles become weak. It is exactly the same way for the brain—you have to “use it or lose it,” as the saying goes.

And, just like exercise, you have to really challenge your brain to keep it in top shape. Studies have shown that the brain retains its ability to grow new connections even in old age,3 so take full advantage of that ability. Consider taking on the challenge of something you always wanted to try but thought you wouldn’t be good at doing. Or, try something that seems opposite of the education you already have. For example, if you are a math whiz, try taking a literature class or an art workshop.

Try This Exercise: Learning can also come in the form of brain games, which studies have shown can combat brain decline. Try this exercise called “Brain Circuit Drawing,” which builds hand-eye coordination and balance the hemispheres of the brain. Grab a sheet of paper and a pencil and practice drawing the patterns below until the motion is smooth and the drawing is symmetrical.

Brain Circuit Drawing

Follow link to print full size:  Brain Circuit Drawing

Image source:  Submitted by author

2.   Find Purpose for Your Life

Especially after they retire, people often lose their sense of purpose in life. This has shown to be detrimental to brain health and a major cause of cognitive decline in older.4 Basically, when people feel useful, they are happier, less stressed, and more resilient throughout their lives. 

In my book I’ve Decided to Live 120 Years, I tell people to assume that they will live to 120, not because it is guaranteed that they will live this long, but because it is the best mindset to have for a long, purposeful life. And, since the oldest people in the world are all near that age, it’s not impossible. With this mindset, you are still in the prime of life at sixty, seventy, or even eighty. Age, then, does not need to limit us in choosing a grand vision for our lives, one that makes our heart soar and leaves us feeling we’ve contributed to the world.

Try This Exercise: Ask yourself, “What is most important to me in life?” Brainstorm a list. What do you hold most dear? Integrity, love, abundance? Write down 10 things that come to mind, whatever they may be. For each item, ask yourself, “Would living this value make me feel really happy and fulfilled?” Then, choose the five things you think are the most important to you. Write down ways you can bring more of them into your life.

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3.   Meditate Regularly

Stress is one of the greatest enemies of brain health and is associated with a greater risk of Alzheimer’s and other forms of dementia.5 And, as you may already know, it is associated with many other forms of health illness, including digestive issues, heart disease, and immune problems. So, doing something to help control it is probably the best thing you can do for your health overall, both body and mind.

Meditation has been found to be especially excellent for reducing stress and for improving cognition. A study at UCLA found that older people who meditate regularly have much more youthful brains than the general population.6 And, it improves one’s ability to focus, which many people struggle with in their later years, and one’s sense of well-being.7

Try This Exercise: Meditation can be as simple as breathing deeply and mindfully, as in the “Abdominal Breathing” exercise I often teach to help people focus and relax. Here is how it basically works:

  1. Sit on the floor or in a chair in a comfortable position and straighten your lower back. You can also lie on your back on a flat surface. Relax your neck, shoulders, and arms and close your eyes.
  2. Place one hand on your chest and the other hand on your lower abdomen.
  3. When you breathe in, let your abdomen expand like a balloon filling with air. When you exhale, let your abdomen contract. The hand on your chest should remain relatively still.
  4. For beginners, it’s good to start with focusing on the feeling of slowly pulling the abdomen in and out without worrying about the length of each breath.
  5. Relax any tension in your body and mind, and breathe comfortably. You don’t need to intentionally breathe slowly or hold your breath. Once your body is sufficiently relaxed, your breathing will automatically slow and stabilize.
  6. As you continue doing abdominal breathing, you’ll develop heat in your belly. Focus your mind on that heat, and it will gradually grow stronger, spreading to your entire abdomen and lower back. Your belly will also feel full of energy.

Summary

Taking care of your brain is the core of taking care of yourself. After all, you can’t be who you are without it. Hopefully, the above exercises will help you take better care of it so that you can live a happy, healthy, and productive life for 100 years or more.


References

[1]   What is Brain Plasticity?  brain IQ. https://www.brainhq.com/brain-resources/brain-plasticity/what-is-brain-plasticity/

[2]   Penny Dacks, Ph.D. Cognitive Enrichment: Lifelong Learning May Help Prevent Dementia, Cognitive Vitality, Jun 2014  https://www.alzdiscovery.org/cognitive-vitality/blog/cognitive-enrichment

[3]  Emily Underwood. New neurons for life? Science Magazine, AAAS, Mar 2019 
 https://www.sciencemag.org/news/2019/03/new-neurons-life-old-people-can-still-make-fresh-brain-cells-study-finds

[4] Alan Mozes. A Sense of Purpose May Benefit Your Brain, COMPASS, by WebMD, Mar 2015 https://www.webmd.com/healthy-aging/news/20150319/a-sense-of-purpose-may-benefit-your-brain#1

[5] Protect your brain from stress, Harvard Health Publishing, Harvard Medical School, Feb 2021. 
 https://www.health.harvard.edu/mind-and-mood/protect-your-brain-from-stress

[6] Eileen Luders, Nicolas Cherbuin and Florian Kurth.  Forever Young(er): potential age-defying effects of long-term meditation on gray matter atrophy, Frontiers in Psychology, Front. Psychol., 21 January 2015  https://www.frontiersin.org/articles/10.3389/fpsyg.2014.01551/full

[7] Matthew A. Killingsworth, Daniel T. Gilbert.  A Wandering Mind Is an Unhappy Mind, AAAS, Science  Nov 2010:
Vol. 330, Issue 6006, pp. 932.   https://science.sciencemag.org/content/330/6006/932.abstract

***

Financial Disclosure: Contents of this post are related to, but not quoted from, Ilchi Lee’s book, I’ve Decided to Live 120 Years: The Ancient Secret to Longevity, Vitality, and Life Transofrmation, which served as the basis for a prior post on TDWI, These 8 Life-Changing Tips Will Help You Age Well.

Although many folks are looking forward to receiving the highly-anticipated COVID vaccine, there are others who are meeting this opportunity with trepidation rather than anticipation  — specifically women who are pregnant or thinking of becoming pregnant. And why is this? Primarily it’s because up until this point,  there has been limited published data about the COVID vaccine and pregnancy. Pregnant women were intentionally left out (due to historical and ethical reasons) of these initial studies looking at the safety and efficacy of the vaccine, though as the trials progressed, a small number of enrolled women did become pregnant and no adverse outcomes have yet been reported in this group. So with all this in mind, let’s talk about what we do know.

 The COVID vaccine is safe

Though it seems that these vaccines were created quickly, the science behind these vaccines has been known and tested by scientists for decades. The perception also that the trials proceeded (perhaps too) quickly needs to be qualified by the fact that the data was obtained during a pandemic which allowed for massive amounts of information about the safety and efficacy of the vaccine to be collected in record time. This vaccine has been tested with the same rigors and held to the same standards as any other vaccine on the market – the setting just allowed this to happen much more quickly, much to our benefit.

With safety assured, it is important to point out that there can still be some short-lived vaccine side effects associated with the COVID vaccine, similar to that which we see for others (such as the flu vaccine which is given routinely in pregnancy). These symptoms include body aches, headache, fatigue, and fever, all generated by our own healthy immune system’s response to the vaccine – it’s actually a good sign that the body is mounting a robust response against any future foreign invader! These effects can easily and safely be managed in pregnant women with acetaminophen if needed.

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Will the vaccine affect my fertility?

There is no data to support that the vaccine will negatively affect your ability to get pregnant, now or in the future. The vaccine molecules are degraded within days after they have done the work of priming the immune system to fight off any future COVID infections. There is nothing left of the vaccine itself within a week of getting it, so you do not have to worry about “holding onto” any foreign substances that may impact fertility. There is also nothing to suggest that these vaccines affect the cycling of hormones or ovulation, sperm generation, or the fertilization or implantation process in any way.

Based on what we know so far, including the years of data of other widely used vaccines in pregnancy including the flu vaccine and Tdap, there is no reason to believe that the COVID vaccine should cause any harmful effects on the mother or baby. In fact, you can argue that the potential benefit of getting the vaccine and avoiding a COVID infection could positively impact the chances of having a healthy pregnancy. Pregnancy itself increases your risk to develop a more serious case of COVID, where increased rates of hospitalizations and ICU admissions have been seen in pregnant women. A healthy mother equates with a greater chance of having a healthy baby, and historically the regular use of most vaccines in pregnancy helps to assure just this.

If pregnant, when is it best to be vaccinated?

There is no data that shows that waiting to be vaccinated until later in pregnancy is any safer than in the earlier stages. However, decisions about when to be vaccinated should be discussed with your health care provider. Considerations about the risks versus benefits of receiving the vaccine rest on several factors, including the level of active viral transmission in the community, the efficacy of the vaccine itself, and potential risks to the mother or baby. Mothers with underlying health conditions (such as diabetes or hypertension) potentially have increased health risks associated with COVID, so a more timely vaccination schedule may be considered.

In terms of benefits to the baby, we do know that antibodies produced in mothers in response to vaccines also cross the placenta and can protect the infant – this is called passive immunity.  You can imagine that infants, whose immune systems are not entirely developed at birth, who are born to vaccinated mothers will already have antibodies and therefore some protection from COVID. This same concept is applied to giving mothers the Tdap vaccine during pregnancy to allow their infants some passive immunity to whooping cough (a life-threatening condition in a baby) when they are born.

Which vaccine should I get?

There are two general types of vaccines available right now: a 2-dose mRNA vaccine (one made by Moderna, and another by Pfizer-BioNTech), and a 1-dose viral vector vaccine (made by Johnson & Johnson/Janssen). The mRNA vaccine does not contain any live virus, and directly delivers to our cells genetic information that encodes a small piece of the COVID virus. Our cells use this information to create a copy of the coronavirus Spike Protein, and this is what mounts our immune response against the virus. Even though this is a novel vaccination method that has not yet been used widely until now, the technology has been applied for years in cancer research.

Alternatively, the virus vector vaccine uses a different and modified harmless virus to deliver a piece of the COVID virus particle (the Spike Protein) to our cells. Our body then creates an immune response against the coronavirus. Janssen has used this same delivery system with its Ebola vaccine which has been tested on women in all three trimesters, and no adverse pregnancy-related outcomes were reported. Animal (nonhuman) studies have also been completed using all three of the COVID vaccines (both the mRNA and virus vector models), and no negative outcomes were reported, for what that is worth.

So which one to choose if you are pregnant? Again, the long-term safety and efficacy data in pregnant women has not yet been established, though studies for all three vaccines are ongoing and are showing reassuring results. Most health officials recommend that you take whichever you are offered due to the good safety profiles of all the available vaccines. Though they differ in mechanism, there is not one vaccine type that stands out as superior to the other as they all provide virtually 100% prevention of serious COVID infections and/or hospitalizations.

Bottom Line: Should pregnant women get vaccinated?

Ultimately, this is a personal choice, though a pregnant woman owes it to herself to be as informed as possible. Since pregnant women were not included in the initial safety and efficacy studies of the COVID vaccine, it is generally recommended that they have a discussion with their health care provider to help weigh the risks versus benefits of getting vaccinated.

However, what we do know about the overall safety and efficacy of this vaccine suggests that pregnant women would greatly benefit from getting it.  Finally, there is also no reason to think that receiving the vaccine early in pregnancy is any less safe than receiving it later in pregnancy, and you should not wait to get the vaccine if you are actively trying to conceive. Several medical groups, including ACOG (American College of Obstetricians and Gynecologists) and the Society for Maternal-Fetal Medicine have also backed these recommendations and are encouraging pregnant women and those trying to conceive, to get the vaccine when it is available to them.

 

 

Pain

Conceptually, over our lifetime we all gain some understanding and insights into pain. But for a person living with chronic pain, it can seem as if the world doesn’t understand.

And the truth is, sometimes the world doesn’t understand.

Even for medical professionals, whose primary role is to provide care, chronic pain can be difficult to appreciate. Because chronic pain is measured subjectively and not well understood, physicians historically viewed chronic pain as a characterological flaw rather than a “true” disease. While we have come a long way in understanding chronic pain states from a pathophysiologic basis, we still have a long way to go. A person’s socioeconomic status, race, ethnicity and gender may disproportionally expose them to this historical bias in viewing their pain as more “psychosomatic” or less legitimate, thereby subjecting them to disparities in receiving appropriate pain care.

We know, for example, that racial and ethnic minorities are less likely to receive adequate treatment for both acute and chronic pain than their white counterparts, even after controlling for variables, such as age, gender and intensity of pain.[1] And when looking at gender, we find that women’s pain is more likely to be downplayed by healthcare—even in the literature—because there is a perception that women are more sensitive to pain or that they are more likely to report pain when compared to men.[2]

When pain isn’t taken seriously, then people don’t get the care they need to address it. Nowhere is this more evident than in interventional pain care, where therapies, such as spinal cord stimulation, dorsal root ganglion and radiofrequency ablation, are underutilized relative to how long these types of therapies have been available and the number of patients who could benefit from them. But simply trying to increase the number or access to interventional procedures isn’t the answer. Instead, we need to understand the barriers that exist and address them accordingly.

The Physician Factor

One of the first areas to look is to the healthcare system itself. Within it, we see that both minorities and women are vastly underrepresented in medicine, in general, and in interventional pain medicine specialties, despite recent advancements that have been made on this front. Consider for a moment that in 2018, only 5% of all doctors were African American or black[3] even though they make up more than 13% of the U.S. population[4]. When looking at interventional pain medicine specialties, the numbers were even lower, with African Americans or black people making up just 4.7% and 3.8% of anesthesiologists and neurosurgeons, respectively.[5], [6] The number rises slightly in the pain medicine specialty, where African American or black doctors make up 5.9% overall.[7], [8] Only by further segmenting the specialties and looking at gender, as well as racial demographics, can we find a double-digit representation—10.3% of all female pain medicine specialists are African American or black.

Similarly, while a 2017 survey by athenahealth found that more than 60% of physicians under the age of 35 were women[9], signaling a coming gender shift in healthcare, men still make up more than 63% of physicians overall[10]. In pain specialties, women are severely underrepresented, making up just 26% of anesthesiologists, 19% of pain medicine specialists, and 9.3% of neurosurgeons.[11] The situation is beginning to improve, with women representing 48% of medical students and 35% of anesthesiology residents, but they still represent only 22% of pain medicine fellow trainees.[12]

Figure 1 (Source: Doshi TL, Bicket MC. Why Aren’t There More Female Pain Medicine Physicians?[13])

 

Femail Chroic Pai Physicians

There is also a large economic gap between those who go into medical school and the general population. While the financial background specific to physicians who opt for pain specialties is not readily available, in looking at all first-year U.S. medical students, 24% came from families that were among the top 5% of earners and 51% came from the top quintile.[14] Meanwhile, only 5% came from the bottom quintile.[15]

This lack of representation matters, not only because—for example—it can be easier for a woman to understand the issues associated with childbirth or chronic pelvic pain, but because the socioeconomic and demographic traits of medical professionals have been correlated with bias,[16] and bias can impact patient assessment, treatment and outcomes[17], [18]

Getting to the Root of the Pain Problem

The second area to look to is the patient perspective. We know that in the U.S., there continues to be significant barriers to care, and if a patient can’t access basic healthcare, then specialty pain care is unlikely to occur. While several issues can contribute to this, some of the most significant are poverty, the educational divide and medical deserts.

Poverty, of course, is chief among these. Wealth inequality has a vast impact on a person’s health. A December 2017 study found that middle-aged Americans who are in the lowest income brackets had a 17% chance of dying compared to just 5% among those in the highest income brackets.[19] Similarly, those with the lowest incomes had a 48% chance of becoming disabled over the next decade while those at the top had only a 15% chance.[20] This same pattern has been demonstrated in patients with chronic pain, who are not only more likely to belong to a lower socioeconomic status[21] but also report feeling pain when faced with economic hardships.[22]  

Unfortunately, people with lower levels of income are also more likely to be without health insurance, which can further impede access to care. We know, for example, that even after the implementation of the Affordable Care Act, almost 30 million non-elderly Americans were still without health insurance coverage in 2019.[23] Of those, 1 in 5 made less than the federal poverty threshold.[24]

Without insurance, people are more likely to sacrifice necessary care, including for their chronic pain.[25] As one example, one study found that white male patients with private insurance were more likely to have access to spinal cord stimulators to treat their pain.[26]

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By the same token, education has been correlated with overall health, as well as with chronic pain. Adults with lower levels of education were more likely to report worse health, regardless of race or gender.[27] National Health Interview Surveys have shown that white men and women had a 57% chance of reporting fair or poor health when they did not have a high school diploma, but only a 9% chance when they had a college diploma.[28] People with less education were also more likely than those with higher levels of education to suffer from non-specific low back pain.[29] Interestingly, people with lower education levels also appear to experience and report more pain with each successive generation that is born—a pattern that is not found in people with bachelor’s degrees.[30]

But all these factors assume people can access the care they need, and for a significant number of Americans, that’s not possible because they live in so-called medical deserts. Often found in rural areas where hospitals have closed and healthcare providers have moved away[31], medical deserts are defined as areas with inadequate access to basic medical services.[32] This forces people to drive longer distances to access care and makes it more difficult for people to access both primary care and specialty care for chronic pain.[33] Ultimately, the need to travel long distances for care has the greatest impact on senior citizens—among those most likely to suffer from chronic pain[34]—and low-income individuals because these groups often face transportation challenges. Without an alternative, these patients are more likely to put off or forego much-needed care.[35]

Digital Health: A Potential Solution

Digital and telehealth are potential solutions for many, helping bridge the divide for those who have few options because of socioeconomic factors. Not only can digital health approaches improve outcomes, but it can also improve mortality, compliance and quality of life.[36] And it can help reduce overall healthcare spending as use of digital health has been associated with cost savings of up to $121 per visit[37], which is a significant reduction for those struggling to pay for their care. But more than that, it can help close the distance between patients and their primary care or specialty physicians. Recent innovations in virtual clinic technology are even allowing interventional pain specialists to make adjustments to neurostimulation devices in patients dealing with chronic pain—a first-of-its-kind advancement in the U.S.

But even as we make advancements, we must continue to find and fill the gaps in care. Digital health, for example, is only as good as the WiFi or computer access at a patient’s disposal. Limited or spotty cell services, slow internet services, and lack of adequate computer technology can keep people from benefiting from digital health options, especially those who are poor in both rural and urban areas.

It is incumbent on all of us—from the healthcare provider to the manufacturer, from payor to policymaker—to break down these barriers to care for all Americans. But to do that, we must first understand the challenges faced in achieving their best health. Only then can we help them restore their health.


References


[1] Mossey JM. Defining racial and ethnic disparities in pain management. Clin Orthop Relat Res. 2011;469(7):1859-1870. doi:10.1007/s11999-011-1770-9.      https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3111792/

[2] Samulowitz A, Gremyr I, Eriksson E, Hensing G. “Brave Men” and “Emotional Women”: A Theory-Guided Literature Review on Gender Bias in Health Care and Gendered Norms towards Patients with Chronic Pain. Pain Res Manag. 2018;2018:6358624. Published 2018 Feb 25. doi:10.1155/2018/6358624  .https://pubmed.ncbi.nlm.nih.gov/21249483/

[3] Association fo American Medical Colleges. Diversity in Medicine: Facts and Figures 2019. https://www.aamc.org/data-reports/workforce/interactive-data/figure-18-percentage-all-active-physicians-race/ethnicity-2018. Accessed March 23, 2021.

[4] United States Census Bureau. QuickFacts United States. https://www.census.gov/quickfacts/fact/table/US/PST045219. Accessed March 23, 2021.

[5] Association of American Medical Colleges. Diversity in Medicine: Facts and Figures 2019. Table 12. Practice Specialty, Females by Race/Ethnicity, 2018. https://www.aamc.org/data-reports/workforce/data/table-12-practice-specialty-females-race/ethnicity-2018. Accessed April 27, 2021.

[6] Association of American Medical Colleges. Diversity in Medicine: Facts and Figures 2019. Table 12. Practice Specialty, Males by Race/Ethnicity, 2018. https://www.aamc.org/data-reports/workforce/data/table-13-practice-specialty-males-race/ethnicity-2018. Accessed April 27, 2021.

[7] Association of American Medical Colleges. Diversity in Medicine: Facts and Figures 2019. Table 12. Practice Specialty, Females by Race/Ethnicity, 2018. https://www.aamc.org/data-reports/workforce/data/table-12-practice-specialty-females-race/ethnicity-2018. Accessed April 27, 2021.

[8] Association of American Medical Colleges. Diversity in Medicine: Facts and Figures 2019. Table 12. Practice Specialty, Males by Race/Ethnicity, 2018. https://www.aamc.org/data-reports/workforce/data/table-13-practice-specialty-males-race/ethnicity-2018. Accessed April 27, 2021.

[9] AthenaHealth. The healthcare future is female. https://bit.ly/3sm8HGL. Published Feb. 14, 2018. Accessed March 23, 2021.

[10] Association of American Medical Colleges. Physician Data Specialty Report. Active Physicians by Sex and Specialty, 2019. https://www.aamc.org/data-reports/workforce/interactive-data/active-physicians-sex-and-specialty-2019. Accessed March 23, 2021.

[11] Association of American Medical Colleges. Physician Data Specialty Report. Active Physicians by Sex and Specialty, 2019. https://www.aamc.org/data-reports/workforce/interactive-data/active-physicians-sex-and-specialty-2019. Accessed March 23, 2021.

[12] Doshi TL, Bicket MC. Why Aren’t There More Female Pain Medicine Physicians? Reg Anesth Pain Med. 2018 Jul;43(5):516-520. doi: 10.1097/AAP.0000000000000774. PMID: 29634520; PMCID: PMC6459683.  https://pubmed.ncbi.nlm.nih.gov/29634520/

[13] Doshi TL, Bicket MC. Why Aren’t There More Female Pain Medicine Physicians? Reg Anesth Pain Med. 2018 Jul;43(5):516-520. doi: 10.1097/AAP.0000000000000774. PMID: 29634520; PMCID: PMC6459683. https://pubmed.ncbi.nlm.nih.gov/29634520/

[14] Association of American Medical Colleges. Analysis in Brief. An Updated Look at the Economic Diversity of U.S. Medical Students. https://www.aamc.org/media/9596/download. Published October 2018. Accessed March 23, 2021.

[15] Association of American Medical Colleges. Analysis in Brief. An Updated Look at the Economic Diversity of U.S. Medical Students. https://www.aamc.org/media/9596/download. Published October 2018. Accessed March 23, 2021.

[16] FitzGerald C, Hurst S. Implicit bias in healthcare professionals: a systematic review. BMC Med Ethics. 2017;18(1):19. Published 2017 Mar 1. doi:10.1186/s12910-017-0179-8.  https://pubmed.ncbi.nlm.nih.gov/28249596/

[17] William J. Hall et al. “Implicit Racial/Ethnic Bias Among Health Care Professionals and Its Influence on Health Care Outcomes: A Systematic Review”, American Journal of Public Health 105, no. 12 (December 1, 2015): pp. e60-e76.  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4638275/

[18] Santoro TN, Santoro JD (December 14, 2018) Racial Bias in the US Opioid Epidemic: A Review of the History of Systemic Bias and Implications for Care. Cureus 10(12): e3733. doi:10.7759/cureus.3733.   https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6384031/

[19] Makaroun LK, Brown RT, Diaz-Ramirez LG, et al. Wealth-Associated Disparities in Death and Disability in the United States and England. JAMA Intern Med. 2017;177(12):1745–1753. doi:10.1001/jamainternmed.2017.3903.   https://jamanetwork.com/journals/jamainternalmedicine/fullarticle/2659324

[20] Makaroun LK, Brown RT, Diaz-Ramirez LG, et al. Wealth-Associated Disparities in Death and Disability in the United States and England. JAMA Intern Med. 2017;177(12):1745–1753. doi:10.1001/jamainternmed.2017.3903.   https://jamanetwork.com/journals/jamainternalmedicine/fullarticle/2659324

[21] Poleshuck EL, Green CR. Socioeconomic disadvantage and pain. Pain. 2008;136(3):235-238. doi:10.1016/j.pain.2008.04.003.    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2488390/

[22] Rios R, Zautra AJ. Socioeconomic disparities in pain: the role of economic hardship and daily financial worry. Health Psychol. 2011;30(1):58-66. doi:10.1037/a0022025.   https://pubmed.ncbi.nlm.nih.gov/21299295/

[23] Tolbert J, Orgera K, Damico A. Key Facts about the Uninsured Population. Kaiser Family Foundation. https://www.kff.org/uninsured/issue-brief/key-facts-about-the-uninsured-population/. Published Nov. 6, 2020. Accessed March 23, 2021.

[24] Tolbert J, Orgera K, Damico A. Key Facts about the Uninsured Population. Kaiser Family Foundation. https://www.kff.org/uninsured/issue-brief/key-facts-about-the-uninsured-population/. Published Nov. 6, 2020. Accessed March 23, 2021.

[25] Kennedy J, Morgan S. A cross-national study of prescription nonadherence due to cost: data from the joint Canada-United States survey of health. Clin Ther. 2006;28:1217–1224  https://www.sciencedirect.com/science/article/abs/pii/S0149291806001718

[26] Missios S, Rahmani R, Bekelis K. Spinal cord stimulators: socioeconomic disparities in four US states. Neuromodulation. 2014 Jul;17(5):451-5; discussion 455-6. doi: 10.1111/ner.12101. Epub 2013 Aug 7. PMID: 23924155.  https://pubmed.ncbi.nlm.nih.gov/23924155/

[27] Zajacova A, Lawrence EM. The Relationship Between Education and Health: Reducing Disparities Through a Contextual Approach. Annu. Rev. Public Health. 2018. 39:273-89.   https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5880718/

[28] Zajacova A, Lawrence EM. The Relationship Between Education and Health: Reducing Disparities Through a Contextual Approach. Annu. Rev. Public Health. 2018. 39:273-89. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5880718/

[29] Batista, Alexandre ApolinĂĄrio de Souza, Henschke, Nicholas, & Oliveira, VinĂ­cius Cunha. (2017). Prevalence of low back pain in different educational levels: a systematic review. Fisioterapia em Movimento30(Suppl. 1), 351-361. https://doi.org/10.1590/1980-5918.030.s01.ar04.

[30] Case A, Deaton A, Stone AA. Decoding the mystery of American pain reveals a warning for the future. Proc Natl Acad Sci U S A. 2020 Oct 6;117(40):24785-24789. doi: 10.1073/pnas.2012350117. Epub 2020 Sep 21. PMID: 32958666; PMCID: PMC7547221.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7547221/

[31] Schulte A, Majerol M, Nadler J. Narrowing the rural-urban health divide. Deloitte. https://www2.deloitte.com/us/en/insights/industry/public-sector/virtual-health-telemedicine-rural-areas.html. Published Nov. 27, 2019. Accessed Feb. 15, 2021.

[32] Chevillard, Guillaume; Lucas-Gabrielli, VĂ©ronique; MousquĂšs, Julien (2018). Dill, Lan (ed.). “Medical deserts in France: Current state of research and future trends”. L’Espace GĂ©ographique. 47: 362–380.

[33] https://www.kff.org/report-section/a-look-at-rural-hospital-closures-and-implications-for-access-to-care-three-case-studies-issue-brief/

[34] NCHS Data Brief. Chronic Pain and High-impact Chronic Pain Among U.S. Adults, 2019. U.S. Centers for Disease Control and Prevention. https://www.cdc.gov/nchs/data/databriefs/db390-H.pdf. Published November 2020. Accessed April 27, 2021.

[35] Schulte A, Majerol M, Nadler J. Narrowing the rural-urban health divide. Deloitte. https://www2.deloitte.com/us/en/insights/industry/public-sector/virtual-health-telemedicine-rural-areas.html. Published Nov. 27, 2019. Accessed Feb. 15, 2021.

[36] Schulte A, Majerol M, Nadler J. Narrowing the rural-urban health divide. Deloitte. https://www2.deloitte.com/us/en/insights/industry/public-sector/virtual-health-telemedicine-rural-areas.html. Published Nov. 27, 2019. Accessed Feb. 15, 2021.

[37] Schulte A, Majerol M, Nadler J. Narrowing the rural-urban health divide. Deloitte. https://www2.deloitte.com/us/en/insights/industry/public-sector/virtual-health-telemedicine-rural-areas.html. Published Nov. 27, 2019. Accessed Feb. 15, 2021.

 

 

The specific research around the ways heart artery disease is different in women has been done. It is landmark research that has life or death implications. There are dozens of scientific articles1 that address this topic.

Differing Symptom Patterns

In all American medicine, there is no better example of the disconnect between what we know and what we do than in the case of women with heart artery disease.  While the different symptom patterns in women with abnormal heart arteries are receiving more attention, a failure to translate those best-practice treatments makes their lives more dangerous and expensive.  The woman who is seen in the emergency room for chest pain or other symptoms suggestive of coronary disease will be evaluated under an outdated scientific paradigm aimed at finding blocked arteries.  She will have a stress test done and /or cardiac catheterization.  If these tests are normal, the patient will be told that the symptoms are not related to her heart.  I saw patients who had repeated chest pain and had been told that the problem was her esophagus or worse depression.  She was told in effect: “Go home, take your Valium and Prozac, you will be fine!”  What she has been told is wrong-too often dead wrong!

The American taxpayer has already paid for a specific study looking at the unique nature of coronary artery disease in women.  The findings of the NIH-sponsored WISE study2 (women’s ischemic syndrome evaluation) study are extremely important and have very practical implications. 

Gender Differences

Coronary artery disease in women is different from coronary disease in men.  This illness in men produces local arterial blockages that cause chest pain with exercise that is relieved by rest.  Many women produce cholesterol deposits that are distributed evenly throughout the arterial system producing arteries that are small and with less localized blockage.  Still, these deposits can rupture and produce clots.  Most heart attacks are clotting events, which explains why the clot preventer aspirin prevents heart attack and clot-busters will stop a heart attack already in progress.  When a clot blocks the artery, that kills the heart muscle downstream and produces a heart attack.

Related Content: Heart Attacks: When Will We Finally Do What Needs to be Done?

Not only are cholesterol deposits in women widespread, but they push3 the artery wall outward and may therefore be very large before producing any blockage.  These soft, inflamed, dangerous deposits explain why women with repeated chest pain in the WISE study still had a high risk4 of heart attack and sudden death, even with a normal heart catheterization.   What these women really need is optimal medical therapy for their vascular risk which has been shown to have a powerful effect on stabilizing cholesterol deposits, relieving symptoms, and preventing heart attack. Optimal medical therapy consists of aspirin, blood pressure control, cholesterol management, and smoking cessation.  Diabetic and prediabetic patients should be on metformin.  Female patients who already have chest pain may benefit from beta-blockers, nitroglycerin, and new medications like Ranexa.5  70% of these women can have their chest pain completely relieved within a year when they are on the best medical treatment.

A Diagnostic Error?

Our current medical system continues to operate under the fixed blockage model in coronary artery disease.  If a patient does not have a fixed blockage, they are told that the problem is not related to the heart.  What are the consequences of this diagnostic error?

These women do not have their real problem effectively addressed.  A year after their catheterization only about 10% of these women were on any treatment for their blood pressure and cholesterol problems.  Many women with repeated chest pain continue to have unnecessary pain and suffering.  Many of them have heart attacks and too many of them die.  The personal costs are devastating.  Because the real problems are not addressed, these women frequently return to the emergency room, have repeated tests and hospitalizations, and seek second opinions.  The lifetime cost 6of care for the woman with repeated chest pain and no heart artery blockage approaches $800,000. These women need optimal medical treatment, and they respond very well to it. I have treated about 25 women like this and they were some of the most grateful patients I ever assisted. Medication treatment relieved their pain and made them safer.

Calculate Your Heart Attack Risk

If you are a woman aged 69 or older your risk of a heart attack is elevated, and you should take a statin even if your cholesterol is not elevated and you have no other risk factors. Use the link just above to calculate your heart attack risk and if it is over 7.5% then you need optimal medical treatment for heart artery disease. Age is the most potent cardiac risk factor. Roughly half of the deaths due to heart artery disease occur suddenly7 and without warning. These women don’t get another chance to protect themselves. If you know a woman with a family history of heart attack, or a woman 69 or older, or a woman with repeated chest pain, please recommend this post to them.  It is time to get much more serious about addressing the unique needs of female patients with heart artery disease.  When will we step up and protect our mothers, wives, and neighbors?

These pictures represent heart arteries that have been cut across like a garden hose or a soda straw. Begin at the top of the picture. That is a normal artery. The next picture down has a darker gray cholesterol deposit extending from about 1 o’clock to 6 o’clock. Below that is a much larger deposit that is soft, inflamed, and prone to rupture but is still not blocking the artery at all. That is why women with no blockage can have a heart attack.

On the left side, you can see what happens in patients that do not receive optimal medical treatment. The cholesterol deposit can rupture as in the first image. That causes the clot you see in the second image, and then that leads to scar tissue formation and blockage as you see in the third image.

On the right side, you see the results of optimal medical treatment (OMT). The cholesterol deposit stabilizes, becomes less inflamed, and it is much less likely to rupture and cause a clot leading to a heart attack. These changes give you more protection within days. As you can see, these soft, dangerous deposits can be reduced with medical treatment and the artery becomes more normal. Our understanding of heart artery disease is much better now and there are very targeted, precise treatments available to protect you. This image is from The South Beach Heart Health Revolution and I have used it with Dr. Agatston’s permission.

This is new information and I know that some of you must have questions which I am very happy to answer if you place them in a comment. I am convinced this information will save lives and I hope you will tell your friends about it.

References


  1. This Women’s Ischemia Syndrome Evaluation, National Institute of Health.  https://www.ncbi.nlm.nih.gov/pmc/?term=This+Women%27s+Ischemia+Syndrome+Evaluation  
  2. WISE Study of Women and Heart Disease Yields Important Findings on Frequently Undiagnosed Coronary Syndrome. National Institue of Health.  News Release, Jan 2006.
  3. Matheen A. Khuddus, M.D., Carl J. Pepine, M.D., Eileen M. Handberg, Ph.D., et al, An Intravascular Ultrasound Analysis in Women Experiencing Chest Pain in the Absence of Obstructive Coronary Artery Disease  http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3019081/pdf/nihms259264.pdf
  4. B. Delia Johnson1, Leslee J. Shaw, Carl J. Pepine , Steven E. Reis et al,  Persistent chest pain predicts cardiovascular events in women without obstructive coronary artery disease: results from the NIH-NHLBI-sponsored Women’s Ischaemia Syndrome Evaluation (WISE) study. European Heart Journal 2006. http://eurheartj.oxfordjournals.org/content/27/12/1408.full.pdf
  5. S. Ndegwa, Ranolazine (Ranexa) for chronic stable angina, National Library of Medicine, Issues Emerg Health Technol. 2007 Jun; (99): 1-6.  https://pubmed.ncbi.nlm.nih.gov/17595750/
  6. Leslee J. Shaw, PhD; C. Noel Bairey Merz, MD; Carl J. Pepine, MD; et al,  The Economic Burden of Angina in Women With Suspected Ischemic Heart Disease< National Institue of Health. DOI: 10.1161/CIRCULATIONAHA.105.609990   http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0000342/
  7. Puja K. Mehta, MDB. Delia Johnson, PhDTanya S. Kenkre, PhD, et al, Sudden Cardiac Death in Women With Suspected Ischemic Heart Disease,
    Journal of the American Heart AssociationVolume 6Issue 821 August 2017     https://www.ahajournals.org/doi/epub/10.1161/JAHA.117.00550

Days are getting longer, the temperatures are rising, and stay-at-home restrictions are easing. As a result, many of us are spending more time outdoors. Hikers are hiking, mountain bikers are biking, and gardeners are gardening. Unfortunately, these activities are not risk-free when it comes to your skin. Depending on where you live, you may inadvertently have a close encounter with poison oak, poison ivy, or poison sumac and end up an annoying, unsightly, and very itchy rash. 

Why does poison ivy cause itchy rashes?

Plants of the genus Toxicodendron (previously classified as the genus Rhus) can cause an itchy rash in many people who come in contact with them. The most commonly encountered plants of this genus include poison ivy, poison oak, and poison sumac.

Even though all three of these plants can cause the rash, it is commonly referred to as poison ivy dermatitis, particularly east of the Rockies. It is often referred to as poison oak in the Western US. The medical name for the condition is Toxicodendron dermatitis or Rhus dermatitis. For ease of reading, the term poison ivy will be used instead of listing all three plants repeatedly.

The rash is a type of allergic contact dermatitis (a classic type IV cell-mediated hypersensitivity reaction). It is triggered when the allergens in oily sap resin, urushiol, is transferred to the skin. These allergens are small and able to quickly penetrate the outer layer of the skin called the epidermis. The presence of these allergens on the skin triggers the immune response that results in the rash.

It is important to know that urushiol is found in all parts of the plants, including the leaves, stems, and roots. It can even be found in dead branches. And, it can be transferred to clothes, the fur of pets, and other objects such as gardening tools that come in contact with the plants. Transfer of the resin from these objects to human skin can also trigger the immune response.

The epidemiology of poison ivy dermatitis

Urushiol is highly allergenic and many people are sensitized to it. In fact, it is estimated that ~50 million people annually require medical treatment after being exposed to urushiol. Although anyone can be affected, certain professionals are at particular risk, including,

  • firefighters
  • forestry workers
  • farmers
  • gardeners.

Poison ivy affects children and adults of all ages, although there is some evidence that the allergic response can decreases with age if people are not repeatedly exposed. Also, it affects all ethnicities and skin types.

In the U.S., poison ivy is more common east of the Rockies and poison oak west of the Rockies. Poison sumac is found mainly in the southeastern part of the country.

Identification of the plant: the key to avoiding contact

Plants in the genus Toxicodendron commonly encountered by people who enjoy the outdoors. Therefore, it is important to learn how to identify them. Their appearance can vary depending on a number of factors, including:

  • growth cycle of the plant
  • region of the country
  • season of the year
  • climate

The old adage “leaves of three, let them be” can be a helpful way to remember how to differentiate poison ivy and poison oak from other plants that are safe to touch.

1. Poison ivy

The poison ivy plant has leaves that grow in groups of three. The leaves are pointed at the tip and the middle leaf may be slightly larger than the other two side leaves. They are green in color in the spring but turn reddish to orange in color in the fall. Poison ivy can grow as both a vine and a shrub. It may have a small cluster of white berries in the spring that can last throughout the winter.

poison ivy for poison ivy dermatitis story

Photos courtesy of U.S. Department of Agriculture – Submitted by Author

2. Poison oak

Poison oak is more typically found as a shrub, although it can sometimes be found as a vine. Its leaves, which vaguely resemble oak leaves, also occur in groups of three similar to poison ivy. The leaves are green in the spring but turn orange to red in the fall. Poison oak flowers may be yellow or green and have greenish-yellow or white berries.

poison oak for poison ivy dermatitis story

Photos courtesy of U.S. Department of Agriculture – Submitted by Author

3. Poison Sumac

Poison sumac is less like the previous varieties in that it is a woody shrub with stems that contain 7 -13 leaves arranged in pairs. The berries also vary and may be pale yellow or cream-colored. Poison mainly grows in wet swampy or boggy areas.

poison sumac for poison ivy dermatitis story

Photos courtesy of U.S. Department of Agriculture – Submitted by Author

Reference for plant ID and photos): https://www.cdc.gov/niosh/topics/plants/identification.html

The poison ivy dermatitis rash 

After being exposed to the urushiol within the oily sap of the plant, a red rash may appear within a few hours, especially if you’ve had poison ivy dermatitis before. In previously unexposed individuals, it may take up to 2 or 3 weeks to develop the rash.

The rash appears as red, intensely itchy bumps or fluid-filled vesicles typically arranged in a characteristic linear or streak-like pattern identifying where the plant contacted the skin. If contact from the oil is a result of touching a piece of clothing or, touching a pet that was romping in the woods and as a result had oil on its fur, the rash may appear more spread out.

***

Other articles by this author:
Sunscreen in the News: What is True and What is Not
What to Do If Your Hands are a Mess from Washing Them So Much

***

If not promptly removed, the oil resin can be spread to other areas of the body by scratching. In addition, the rash may appear to be spreading over time because the eruptions will occur first in the areas of most intense exposure to the allergens and later in areas with less intense exposure.

The rash itself is not contagious. This is not an infection, it is an allergic reaction.

If left untreated, a poison ivy rash may last for several weeks. Those who have previously suffered from the rash tend to heal in a few days. Those who have never had the rash seem to take longer to heal.

 

poison ivy dermatitis

Poison ivy dermatitis. (Photo compliments of the American Academy of Dermatology National Library of Dermatologic Teaching Slides)

Poison ivy prevention and treatment

1. Prevention

As is the case for many conditions, prevention is the best cure:

  • Avoid the plant if possible and learn how to identify poison ivy in all of its seasonal and geographic variations. Remember: “leaves of three, let it be.”
  • Wear protective clothing when gardening or hiking: high socks, long sleeves, and pants.
  • The use of barrier creams to prevent poison ivy rash is controversial. These topical preparations are typically applied prior to exposure in an attempt to prevent the rash. A reduction of reactivity was seen in a small study with a 5% quaternion-18 bentonite lotion (bentoquatam). 

2. Remove the resin as soon as possible after exposure

Although the rash itself is not contagious, spreading the oil from one person to another is certainly possible if the oil is not removed.

  • Wash the exposed area with mild soap and water to remove any remnant oil resin from your skin as soon as possible. Be sure to clean under the fingernails to remove any resin that may remain under the nails.
  • Wash all items that may have come in contact with the plant or its oils including clothing, patio furniture, gardening tools, gardening gloves, golf clubs, and even your pets. The oil does not have to come directly from the plant to cause a reaction.

3. A mild case of poison ivy dermatitis with home remedies

  • Over-the-counter hydrocortisone cream applied twice daily may relieve the itch and minimize the reaction.
  • An oral antihistamine may also relieve the itch.
  • Apply calamine lotion to small blisters and oozing skin to help dry out the rash.
  • Epsom salt soaks may also help dry out the rash.
  • Do not open blisters as this may predispose the skin to infection.
  • Cool compresses applied to itchy areas may be comforting.

If the rash is widespread or severe, affects the face or genitals, if blisters are oozing pus, or if fever develops, seek medical attention immediately.

4. Medical treatments for the poison ivy rash

  • Topical Corticosteroid Therapy: high potency corticosteroid preparations applied directly on the rash is the mainstay of therapy for rhus dermatitis. To avoid the development of  skin atrophy, the extended use of these high potency preparations should be avoided on certain areas such as: 
      • the face
      • genitals,
      • skin folds of the armpits and groin
  • Systemic corticosteroid therapy: Patients with severe or widespread disease, or with a rash that involves the face or genitals, may benefit from oral steroid therapy. Although there is no standard dosing, clinical experience suggests that poison ivy may rebound when too short of a course is taken (such as a 6-day dose pack of methylprednisolone).  A high dose (1 mg/kg/day up to a maximum starting dose of 60 mg) of oral prednisone therapy given over 2 – 3 weeks can dramatically improve poison ivy symptoms. For patients who cannot take oral medication, or cannot comply with the dosing schedule, intramuscular injections are another treatment option.
  • Antibiotics may be necessary if bacterial infection of the underlying rash is suspected.

If it’s not poison ivy what else could it be?

  • An allergic contact dermatitis from a different kind of plant: Rashes similar to the one caused by the genus Toxicodendron can also be caused by other plants.  Plants in the genus Asteraceae, which include the flowering plants: daisies, sunflowers, dandelions, and asters can also cause a similar skin eruption. Plants in the genera Alliaceae (garlic), Allium (onion), and Myrtaceae (tea tree), amongst others, can also cause similar rashes. 
  • An allergic contact dermatitis from something other than a plant: Allergic contact dermatitis can also be caused by allergens that are not plants. Nickel and gold, metals typically found in jewelry, for example, are common causes of allergic contact dermatitis. 
  • Phototoxic reactions that may appear as red rashes with or without blistering may occur in response to exposure to photosensitizing plants and ultraviolet exposure. The most common plants to cause these types of reactions include those in the genus Rutaceae (lemons and limes) and Umbelliferae (celery, wild parsnip, and parsley.) Unlike poison ivy, these reactions will only appear on sun-exposed skin.

Poison ivy dermatitis: the bottom line

It’s best to avoid contact with the Toxicodendron plants that cause this annoying rash. But if you can’t or didn’t, move quickly to remove any resin on your skin by washing with soap and water. If the rash erupts anyway (and it is likely to), try home remedies first. But seek medical care for more serious cases.

 

See more articles by Fayne Frey, MD


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Originally published on May 17, 2020.  Updated by the author and republished on June 3, 2021.

As part of the COVID-19 patient support program, the Global Healthy Living Foundation1 and their digital, international arthritis organization, CreakyJoints2, have been speaking to experts, reviewing peer-reviewed literature, and reading government guidance to understand what people living with chronic disease need to know about getting vaccinated. In this article, we use that knowledge to answer questions you may have about chronic illness and COVID-19 vaccination.

Living with chronic illness during the COVID-19 pandemic

We’ve been living with the COVID-19 pandemic so long that it may be hard to remember what it was like before we all learned about the three Ws:

    • Wear a Mask
    • Wash Your Hands
    • Watch Your Distance

It’s simple advice, but even the healthiest person can find it hard to maintain their discipline and good attitude over time. When you are coping with a chronic illness, the pandemic may pose an even bigger burden and be more isolating.

Further, being more confined to our homes did not stop people from experiencing new and alarming symptoms and seeking medical care (in person or via telehealth3). Some individuals were subsequently newly diagnosed with a chronic illness (for example, diabetes, migraine, or an inflammatory disease such as rheumatoid arthritis, psoriasis, Crohn’s disease, or lupus) and started on therapy.

It can be overwhelming to get diagnosed with an illness that needs to be managed over a lifetime at any time. There is a lot to learn about treatments and monitoring for and managing symptoms. But trying to cope with the challenges of both a newly diagnosed chronic illness and the COVID-19 pandemic can feel like a double whammy.

Here’s what you need to know about managing chronic illness and COVID-19 regardless of whether you have been recently diagnosed or have been living for some time with a chronic illness.

What is the most important goal for people with chronic illness during COVID-19?

Regardless of your chronic condition, keeping it as well-controlled as possible — meaning low disease activity or remission — is the goal. When you have low activity, typically this means less pain, fatigue, or challenges completing the tasks of daily living. Good disease control translates to a reduced risk for developing serious complications, such as cardiovascular disease4. As a bonus, new research shows that a person with good disease control is at lower risk for dying from COVID-195.

In this study, 90 percent of the nearly 3,800 people evaluated who developed COVID-19  survived (back in spring and summer of 2020 even before doctors had as many resources as available in 2021).

 

Those who died were more likely to have risk factors that make COVID-19 more deadly such as being older, male, and living with comorbid conditions such as hypertension, heart, lung or kidney disease, and diabetes. For those with rheumatic diseases like arthritis, researchers reported that those with moderate to high disease activity were significantly more likely to die from COVID-19 than those with low disease activity.

The best way to keep your disease controlled is to stay on your medications and make sure to regularly connect with your doctors to make sure your treatment plan is on track.

Experts agree. For example, the American College of Rheumatology recommends6 that a healthy patient (one who is not suffering a flare or having high disease activity) who does not have a COVID-19 infection or a known exposure should not stop taking their disease-modifying medication. Further, if there is an exposure, patients should still remain on medication until they speak with their doctor. Making the decision to stop medication without input from a member of the health care team can impact the quality of life if symptoms emerge, and flares occur, potentially leading to disease complications.

Related Content:
Addressing Vaccine Hesitancy in Communities of Color
COVID-19 Vaccine Rollout: Why Success Hinges on Technology

Stay on meds, but get vaccinated!

Vaccination protects individuals and protects public health, which is why everyone over the age of 16 is eligible and encouraged to get vaccinated! (And the vaccine is in clinical trials7 to evaluate its safety and effectiveness  in children8 now, as well.)

Some patients living with immunosuppressive conditions may have concerns about whether the three vaccines currently approved by the U.S. Food and Drug Administration (FDA) are safe for them, given that they already take medications that are immunomodulating.

As part of the COVID-19 patient support program, the Global Healthy Living  Foundation and their digital, international arthritis organization, CreakyJoints, have been speaking to experts, reviewing peer-reviewed literature, and reading government guidance to understand what people living with chronic disease need to know about getting vaccinated. They say that “In the case of many immunomodulating medications for rheumatic diseases, the guidance suggests that patients do not stop taking medications before or after getting the vaccine. This is because there is no reason to think, based on available data, that stopping these medications would increase your body’s immune system response to the vaccine.” 

This applies to:

      • Hydroxychloroquine (Plaquenil)
      • IVIG
      • Low-dose glucocorticoids (ex: prednisone, daily dose < 20 mg)
      • Sulfasalazine (Azulfidine)
      • Leflunomide (Arava)
      • Mycophenolate (CellCept)
      • Azathioprine (Imuran)
      • Cyclophosphamide (Cytoxan) (oral)
      • TNF biologics (ex: Cimzia, Enbrel, Humira, Remicade, Simponi and Simponi Aria)
      • IL-6 biologics (ex: Actemra, Kevzara)
      • IL-1 biologics (ex: Kineret, Ilaris)
      • IL-17 biologics (ex: Cosentyx, Taltz)
      • IL-23 biologics (ex: Skyrizi, Tremfya)
      • IL-12/23 biologics (ex: Stelara)
      • Belimumab (Benlysta)
      • Oral calcineurin inhibitors (ex: cyclosporine or tacrolimus)

Importantly, there is some debate about the use of high-dose steroids (daily doses ≄ 20 mg) and vaccination. Some doctors think that temporarily lowering the dose may be a good idea. This may vary from patient to patient, so it’s important to talk to a doctor if you have questions before or after vaccination about your medications.

Also, the guidance suggests that the timing of medications may need to be altered to allow the COVID-19 vaccine to do its job. This may apply to patients taking methotrexate, JAK inhibitors, Abatacept (Orencia), Rituximab (Rituxan), or cyclophosphamide infusion. Again, talk to your doctor!

Studies are ongoing regarding the duration of effectiveness of all the vaccinations over time, in the general population and in specific patient groups, like people with a chronic illness.

Which vaccine is right for patients with a chronic illness?

Whichever vaccine is offered by a health provider or vaccination clinic is the right one for patients with a chronic illness. There are no meaningful differences that make one better or worse than another.

In the rare event that a non-serious side effect occurs following the first dose of the COVID-19 vaccine, it is still recommended that everyone get their second dose. A non-serious side effect includes pain and swelling at the injection site, fever, chills, fatigue, and headache. You might feel like you have a mild flu, but this will likely subside within 24 hours. A serious side effect would be an allergic, anaphylactic reaction.

While you should talk to your doctor, the CDC also recommends that people get vaccinated even if in the past a patient has had reactions to a different biologic infusion/injection. Only two reasons are considered contraindications to vaccination:

      • Severe allergic reaction (e.g., anaphylaxis) after a previous dose or to a component of the COVID-19 vaccine (such as PEG or polysorbate)
      • An immediate allergic reaction of any severity to a previous dose or known (diagnosed) allergy to a component of the vaccine

Not, sure if this applies to you? The CDC provides a full list of the ingredients9 included in all three COVID-19 vaccines authorized in the United States.

There is no reason to be tested for antibodies before or after vaccination. The vaccine manufacturers and government partners have followed all the normal procedures to develop these vaccines even if they were developed at a quicker rate than normal. In fact, the rapid vaccine development is a true testament to what can be accomplished with true, global cooperation and investment.

What to do after vaccination

Until a larger percentage of your local community and the country at large is vaccinated, it is recommended that all people, but especially those who have a chronic illness and might be immunocompromised, follow current public health guidelines, especially pertaining to wearing a mask, physical distancing, and avoiding crowds where you are unsure if others around you may or may not be vaccinated.

As summer approaches, different states may have different guidelines for public gatherings, so if you plan to travel, make sure to check on local rules. The CDC also updated its guidance for people who are fully vaccinated for outdoor activities10 in late April. To be considered, “fully vaccinated” a person must be two weeks past their second dose of the Pfizer or Moderna vaccine or the single dose of the Johnson & Johnson vaccine.

In early June 2021, there were over 33 million COVID-19 cases reported by the CDC11, but deaths are on a downward trend. However, more than 60 percent12 of the U.S. population 12 years and old has had at least one dose of the vaccine. As those numbers improve, our pandemic precautions will slowly relax.

Soon, the pandemic will be in the past, but only if everyone does their part to protect each other through vaccination and public health measures.

To keep abreast of the COVID-19 pandemic and what people living with chronic disease need to know, join the Global Healthy Living Foundation COVID-19 Patient Support Program at www.ghlf.org

 

References


 

  1. Global Healthy Living Foundation, COVID19 Support Progam for Chronic Illness Patients.  http://www.ghlf.org/
  2. GHLF’s FREE COVID-19 Support Program for Chronic Disease Patients and Their Families, CreakyJoints.  http://www.creakyjoints.org
  3. Steven R. Newmark, JD, MPA, In the Face of a Medicaid Tsunami, Telehealth is More Important Than Ever, The Doctor Weighs In.  https://thedoctorweighsin.com/medicaid-telehealth/
  4. Rheumatoid Arthritis and Heart Disease: Why You’re at Increased Risk, CreakyJoints.  https://creakyjoints.org/comorbid-conditions/rheumatoid-arthritis-heart-disease-increased-risk/
  5. Anja Strangfeld, Martin SchĂ€fer, Milena A Gianfrancesco, Saskia Lawson-Tovey, et al.  Factors associated with COVID-19-related death in people with rheumatic diseases: results from the COVID-19 Global Rheumatology Alliance physician-reported registry, BMJ Journals.  https://ard.bmj.com/content/early/2021/03/07/annrheumdis-2020-219498
  6. COVID-19 Guidance,   COVID-19 Vaccine Clinical Guidance for Patients with Rheumatic and Musculoskeletal Diseases (RMDs), American College of Rheumatology, Updated April 2021.  https://www.rheumatology.org/Practice-Quality/Clinical-Support/COVID-19-Guidance
  7. Five Reasons Why You Should Participate in Clinical Trials, The Doctor Weighs In. https://thedoctorweighsin.com/participate-in-clinical-trials/ 
  8. Jeanna Lucci-Canapari and Robert Forman, COVID-19 Vaccine Trials for Young Children Proceed at Yale, Yale School of Medicine, April 2021 https://medicine.yale.edu/news-article/covid-19-vaccine-trials-for-young-children-proceed-at-yale/Interim Clinical Considerations for Use of COVID-19 Vaccines Currently Authorized in the United States 
  9. Interim Clinical Considerations for Use of COVID-19 Vaccines Currently Authorized in the United States, Centers for Disease Control and Prevention.  
    https://www.cdc.gov/vaccines/covid-19/info-by-product/clinical-considerations.html#Appendix-C
  10. Interim Public Health Recommendations for Fully Vaccinated People, Centers for Disease Control and Prevention.    https://www.cdc.gov/coronavirus/2019-ncov/vaccines/fully-vaccinated-guidance.htmlCOVID Data Tracker,  United States
  11. COVID-19 Cases, Deaths, and Laboratory Testing (NAATs) by State, Territory, and Jurisdiction, Centers for Disease Control and Prevention.   https://covid.cdc.gov/covid-data-tracker/#cases_casesper100klast7days
  12. COVID Data Tracker, COVID-19 Vaccinations in the United States, Centers for Disease Control and Prevention.  
      https://covid.cdc.gov/covid-data-tracker/#vaccinations

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Disclosure Statement: Dr. Hernandez has no disclosures pertaining to the contents of this article or his work at GHLF.

***

 

 

 

 

 

I am a sixty-year-old anesthesiologist fast approaching the home stretch of my time practicing medicine. I am hoping for five, maybe six more years at the most. When I have turned the desflurane vaporizer1 off after anesthetizing my last patient, I plan on being ready for whatever comes next. I am also a storyteller and write about the amazing and inspiring people I have had the privilege to care for. They are tales filled with great courage and resilience, about people who struggle mightily to survive and overcome their illnesses, sometimes in the face of long odds. At times these stories celebrate the unbridled joy of hope and recovery, but sadly not all of them end well, exposing at times the tragic and bottomless feeling of loss.

About Me

This story is a particularly difficult one to tell because it is about me. More specifically it is about the discovery in my forties that I carried a defective gene on my fourth chromosome called DUX42 that for some inexplicable, and maddening reason became active. My mid-life crisis didn’t involve a fancy sports car, a wild trip to Vegas, or god-forbid, a divorce. Instead, it manifested itself in the expression of this wayward gene, resulting in a progressive debilitating form of muscular dystrophy called facioscapulohumeral dystrophy, or FSHD3 for which there is no treatment and definitely no cure. The disease is slowly but inexorably replacing many of my muscles with useless non-contractile tissue, robbing me of the ability to do many of the things I love, including potentially my work. I sometimes imagine that this disease is like a thief in the night who steals my finest unique possessions. Instead of just taking them, he mockingly leaves poor facsimiles of the stolen objects behind, reminding me always of what has been lost and what can never be replaced. 

dys-trophy

In this story, I will enlist the help of my daughter Kate4, also a writer and a keen, longtime observer of me. Her memories and impressions of the progression of my condition are candid and sharp, and she has kept me in my retelling of this story both focused and honest.  I don’t know what I would have done without her. Kate’s entries are in italic.

(Kate) I mistakenly broke the word dystrophy into dy-strophy. I thought strophy might relate to strong. I look up strophy – nothing. I look up strong. The definition is everything you’d expect. But as I scroll further down on the entry for the word, I notice that strength becomes less about the body and more about the mind. I like this but wonder why it isn’t the reverse. The correct broken-up form of dystrophy is dys-trophy. The prefix is -dys: “destroying the good sense of the word and increasing the bad.” Trophy means growth. Therefore, dystrophy roughly means destroyed growth. When I search the interactive online Oxford English Dictionary for the definition of the word dystrophy, it asks back: do you mean to destroy? But I don’t.

 In 1982, after spending four years at Stanford and graduating with a degree in International Relations, my only definitive plan for the future was to spend the next year living and working at the Stanford Sierra Camp5 and conference center at Fallen Leaf Lake. After rejecting the idea of going to law school, a career in the foreign service, or a job in consulting, I found myself like many young people do, at a crossroads – unsure of who I was and where I wanted to go next. 

A New Direction

I made that decision on a bitterly cold October morning when a friend and I attempted to rescue and resuscitate two fishermen who had flipped their rowboat and fallen into the freezing water at the southern end of the lake. Unfortunately, our attempts at CPR failed, and both men suffered a cardiac arrest from the cold shock of the water, and we couldn’t save them. A horrible tragedy for these men and their families, it was also a turning point for me and a clear separation from who I was and who I wanted to be.

So, in the fall of 1983 at the age of twenty-two, having never taken any pre-medical classes, I enrolled at UC Santa Cruz6 in order to complete a second baccalaureate degree in Biology to meet the pre-requisites for entering medical school two years later. Most of my friends told me I was crazy and that this was impossible. Several of them after graduation had moved to Seattle and recently started working at a small company called Microsoft, recently relocated from New Mexico to Bellevue a few years before. They kept calling trying to convince me to join them. I was tempted but said no, as I was a man on a mission.

The pre-med advisor at UC Santa Cruz echoed my friends’ beliefs and told me that I had literally no chance of success given my age, my self-imposed deadline of two years, and my “good but not great” undergraduate grades. But that made me want it even more, and I committed myself to studying hard and being the type of student I never felt I was at Stanford – one who had a passion for the subjects I took. This was born of a combination of an insatiable newly discovered curiosity about science as well as an intense desire to achieve my goals. 

In my first year at Santa Cruz, I lived in a tiny studio apartment attached to a house that sat on a bluff overlooking Santa Maria beach at Pleasure Point7 south of the university. I cloistered and studied like a monk, albeit a monk who lived near an epic surf-break. Every night I went to sleep to the sound of the crashing waves, and most mornings I rose before dawn to walk along the shore before heading off to my classes, my head filled with facts, equations, and organic chemistry reactions. My lonesome, but idyllic beach life was not to last, however, as, at the end of my spring quarter, the owner of the house sold it, and I had to move. 

A New Love

I relocated to an entirely different, but equally isolated environment, a little rustic cabin in a stand of redwoods on Pine Flat Road in the small town of Bonny Doon8 in the Santa Cruz mountains far above the campus. By this time, I had sold my well-worn, and constantly in need of repair 1974 purple Triumph TR-6 convertible. The ragtop of my car was full of holes and leaked, and in the foggy, dark, and damp environment of the redwoods, the carpet of the car sprouted plants from the chia seeds I had spilled on it. So, I bought a relatively new type of bicycle and exclusively rode that. It was my first mountain bike – a Specialized Stumpjumper9, and I fell in love with it and the freedom it represented. I rode it everywhere and became healthy and fit. 

My Determination

I worked harder that next year than I had ever worked in my life, taking upper-division biology and chemistry classes. I found work in a research lab, volunteered at the local hospital, prepared for and took the MCAT, and spent what little time I had left exploring the many fire roads and trails that extended far into the Santa Cruz mountains. To say it was one of the happiest times of my life is not too much of a stretch. It was solitary to be sure, lonesome but not lonely. It was intense, but it had a purpose. 

The mental effort I put into being a post-baccalaureate pre-medical student matched the physical effort I expended strengthening and improving my skills as a mountain bike rider. I recall the feeling of immense accomplishment in memorizing the arcana of organic chemistry, the complexities of molecular biology, or the precise and orderly reactions of physical chemistry. In the late afternoons after class and on weekends, I learned how to keep my balance on steep terrain and negotiate the rocky switchbacks of the myriad single-track mountain biking trails that wound through the forests around Bonny Doon and Felton. Mostly I loved the purity and simplicity of my purpose, freed from other distractions and focused only on one goal. All the while I was blessed to live in a natural paradise suffused with the incomparable smells and sights of one of the few places in the world where the coastal redwoods meet the golden, grass-covered hills. In my dreams, I still roll beneath the cool, evergreen canopy on the rutted dirt trails that follow the many creeks – Liddell, San Vicente, Agua Pura, and Laguna that wind down the mountain under the tendrils of fog, to the salt spray of the rocky wind-swept beaches below.  

My Next Steps

In the summer of 1985, I was admitted to Stanford Medical School. That autumn, feeling a bit wistful but excited for what was to come, I left Santa Cruz and my cabin in the woods behind. I returned to Stanford proud of my accomplishments of the past two years and of my tenacity. The day before I left my little mountain home for good, I rode my bike one last time down Empire Grade, the long and curvy road from Bonny Doon to the Santa Cruz campus. It felt like a catharsis or the shedding of a cocoon that I no longer needed. I raced down the twisting road, leaning heavily into its curves. I vividly remember that day and the look of the beautiful UC campus nestled in the pockets of redwood groves in the grassy hills set high above the Pacific coast. After my thanks and goodbyes, I turned my bike around to ride up the steep hill, thinking the entire way about the new and far more difficult path ahead. I remember how strong my legs felt as I slowly pedaled my way back up the steep winding grade.

(Kate) We hike the path that winds up the cliffs surrounding the beach. The incline is uneven and made up entirely of crumbling sedimentary rock. I worry about him because he keeps tripping. I lend a hand to help with his next step up, but he does not accept my offer. I’m fine he says, but I sense anxiety. I slow my pace and calmly talk to him about my own anxieties, not about him, just personal unrelated ones. I ask for advice. As he guides me through the complexities of love, fluidly contriving metaphors, he finds his stride and even passes me up the hill. I place my hands on his uneven shoulders, letting him guide me the rest of the way. 

Time Goes By

The years of medical school passed quickly, and one by one I ticked off the major milestones of adulthood. I met my wife Dana at a party celebrating my successful completion of the first part of the national medical boards. To be honest, we had met a few years before. She appeared one morning, her face like some Botticelli painting, framed in sunlight at the door to my beach studio in Santa Cruz. She was on her way back to Berkeley from Santa Barbara to pick up one of my few visitors that year – my best friend and roommate from college, Dan, who was dating Dana’s sister Ashley. I distinctly remember telling myself that this was the woman I was going to marry. And miraculously several years later, I did. In the years that followed, I completed my internship and residency in anesthesiology, a research fellowship and seven years as a faculty member at UCSF. We had three children, four dogs, and bought and sold three houses in Seattle and Marin. I made a major career move in 1999, leaving academic practice for a large anesthesia private practice group10 in San Francisco for which I now serve as its chairman.

(Kate) I remember when I used to sit on these shoulders. Before the muscular dystrophy expressed itself, he had broad, strong ones that carried me all over our house – through the garden, up the stairs, down the stairs, and through the doorways where I always bonked my head. Now there are hollows where his muscles used to be. I see them, not as absences of strength, but as reminders of strength. They are memories of the weight he once carried as a young father – how he used to hold me up and help me grow.

What Noise?

In early 2002, a few months after my 41st birthday and fortunately a year after I had renewed my life insurance and disability insurance policies, I had just gotten back from a particularly vigorous, long, steep, and muddy mountain bike ride on Mt. Tamalpais. My long-delayed birthday present to myself was a new mountain bike, the fifth or sixth I had owned since my days at UC Santa Cruz. Coincidentally, my new bike was a beautiful Santa Cruz Blur11, and it was my most prized possession.

On this particular day, Dana and I were walking to Safeway to buy groceries after my ride, and I hadn’t changed out of my bike shoes. Even though I was at first oblivious to the metallic tap of my cleats hitting the floor, she wasn’t.

“Why is your shoe making that noise?” She said, “What’s wrong with it?

“What noise?” I answered 

“The uneven one. The step-click, step-click. Do you have a rock stuck on the bottom of one of your shoes?”

Now I did notice. The noise of my footsteps wasn’t even. Every time my left foot hit the ground it hit harder and made a much louder sound than my right foot as if I were wearing tap shoes. I sat down on the curb and picked up my left foot with my right hand to examine the bottom of my shoe, expecting to see a pebble stuck in the tread, or jammed in the metal SPD clip. Other than a bit of mud, the sole of the shoe was clear. No rock. So, I tried walking again – step-click, step-click. Something was definitely not right. 

After I got home, I paraded back and forth in front of the mirror in our front hall watching my feet and I noticed something. My gait was slightly uneven, and my left foot dipped a little lower than my right. As I passed the mirror each time, I noticed I was unconsciously lifting my left foot a little higher with each step so my toes wouldn’t hit the floor. I remember thinking to myself somewhat impassively, “Hmmm, interesting. You have a foot drop12.” as if my body was somehow not my own, and I was a patient I was examining. The long habit of generating a differential diagnosis kicked in. A foot drop can be caused by many things – spinal nerve root compression, peroneal nerve palsy, a wide variety of rare neurologic conditions
and muscular dystrophy.

(Kate) I watch Dad unabashedly take off his shirt and reveal his lopsided belly. The abdominal muscles on his left side look like they have surrendered and gone slack, which makes him look, half pregnant, as strange as that may sound. He carries on, unlacing his shoes, un-velcroing the braces strapped around his skinny lower legs, and keeping his shorts on, thank God. He clumsily steps up to the overhanging rock at the edge of our pool, finds his balance, points his chin into the air, and jumps. He makes the biggest splash of the whole family, always has. His half-belly rises over the concrete rock as he struggles to lift himself up, and out of the water.

Discoveries

The mystery of my foot drop took some time to figure out. At first, my neurologist thought I had a problem called “fat wallet syndrome”,13 a condition in which a wallet in the back pocket puts pressure on the sciatic nerve which sits deep in the gluteus maximus muscle. It is common in long-haul truckers and others who sit for extended periods. Anesthesiologists sit for many hours for long operations, he reasoned. There were two big problems with that theory. First, I carry my wallet in my right pocket. The foot drop was on my left side. And second, I like to stand most of the time during operations rather than sit. Besides, this syndrome is usually accompanied by pain and tingling, and I had neither. So, the next step in figuring out what was going on was to schedule an MRI of my spine to look for nerve root or distal nerve compression. 

As I sat in the long claustrophobic tube of the MRI machine, listening to the loud bangs, clicks, and hum14 of the giant magnet surrounding me, I was sure that we would find something. The technician’s voice over the intercom reassured me that we would be done soon. But he was wrong. The radiologist, who was also a friend of mine, sat at the console and reviewed the scout images of my spine MRI looking for any evidence of lumbar disc herniation or spinal canal narrowing, and he saw none. They scanned lower and lower. Minutes passed, then an hour more. Finally, after what seemed like an eternity in the narrow tunnel, I was pulled out of the machine. My friend stood above me looking both puzzled and concerned, and with an expression and voice that I recognized all too well as a doctor about to deliver bad news said, “Something weird is going on with the muscles in your legs. We’re going to need to do more tests
”

In retrospect, it should have been more obvious to me. My mother’s younger sister Sue, a pediatrician who lived in Pennsylvania had long suffered from a variety of medical problems. She developed kidney failure in her early sixties and required a kidney transplant. She fatigued easily and always seemed a bit frail. Over the years, she became weaker and thinner, and her muscles literally disappeared before our eyes. But it was not until I began to develop signs of muscle weakness that we put two and two together and we both were tested for the genetic markers of muscular dystrophy. It was no surprise to me that each of our genetic test results came back positive for the same type of dystrophy. Aunt Sue lived for several years after the discovery of the source of her disability, but one morning in her mid-seventies she was found dead in her bathroom by her live-in caregiver having suffocated from an inability to keep her head upright.

More content by this author:
An Anesthesiologist Learns the ‘Facts’ about Epidurals in Childbirth Class
A Surgical Emergency Exposes the Crisis of the Young and Uninsured

Fighting Back

In the year after my diagnosis, I tried in equal measures to both minimize and fight this unfortunate disorder. So, I redoubled my efforts to exercise and train on my mountain bike by hiring a trainer named Bob who was a short, wiry muscular man without an ounce of fat on his body. He was an incredible motivator and was intimately familiar with every bike trail on Mt. Tamalpais, including the challenging but illegal ones. Against the better advice of my neurologist and my wife, I pushed myself hard and rode every day, either before or after work. I became surly and annoyed when I was on call and couldn’t ride. It became an obsession and a way of displacing my anxiety and sadness about my muscular deterioration. 

This drive came to a head when I signed up for the Sea Otter15 race in Laguna Seca, near Monterey. The Sea Otter is the largest mountain biking festival in the world drawing thousands of participants of all ages. The long cross-country racecourse is plotted on the many trails around Fort Ord, in Monterey and it changes every year depending on the conditions. The year I entered, the course was nearly thirty miles long, traversing sandy trails, muddy pits, and steep inclines.

 I was barely able to complete the race, and it was exhausting. Rather than reveling in a sense of great accomplishment and triumph as I should have, I felt that I had humiliated myself. My muscles simply did not cooperate despite the many months of training. I finished far back from my friends who trained with me, many of whom accompanied me for miles and miles of the race out of kindness before they pulled ahead and sped off into the distance. Bob stayed with me the whole time despite the fact that he could have completed two circuits of the course in the time it took me to do one.

 When I reached the finish line, the first thing I did, after dropping my bike and limping dejectedly away from it, was to call my wife. I simply broke down and could not stop sobbing. It felt like I had lost something I could never get back. Never mind that I, a person with muscular dystrophy, had just successfully completed a thirty-mile bike race. I didn’t see it that way. 

(Kate) He doesn’t cry often but one of the strongest memories I have of him is the first time I saw him cry. Through a crack in the door, I saw him and Mom sitting at the foot of an unfamiliar motel bed in Monterey, their knees touching. Moms’ arms were wrapped around his shoulders. Her blonde hair flowed over his head and framed his face as she whispered into his ear. I didn’t know what she was saying to him, but I wanted to. I moved closer to the crack of the door and heard a soft whimper. It’s wasn’t Mom. I looked again and saw Daddy’s red cheeks glistening. I didn’t know he was capable of crying. He seemed so sure of himself and strong all the time. Apparently, he was exhausted from the bike race. It was simply too hard. 

The bike race was broken up into age categories. At the time, he was in his early forties and in good physical shape. In front of him at the starting line were the 20–40-year-old racers, and behind him was the older crowd, the teenagers, and the female racers. He remembered he made it up to a steep incline but could not muster the strength to pedal the whole way up. People from the other groups began to pass him. One teenager even rudely said to him as he elbowed past Dad, “Hey dude, this is a bike race, not a hike race!” When he got to the finish line he broke down in tears. He was exhausted, but also, I imagine, humiliated. The race wasn’t simply just too hard, his muscles were not working the same way they once did. It wasn’t his heart and lungs that failed him, it was his legs.

My Support

Since my diagnosis, I have been lucky to work with a variety of talented and brilliant physicians, physical therapists, and orthotic professionals16. My left foot drop has progressed due to the continued wasting of my gastrocnemius and tibialis muscles, and two years after the first sign of dystrophy, my right leg muscles began to waste as well. My shoulder and back muscles followed, but fortunately as of yet, not severely. Most annoying has been the loss of my abdominal muscles on the left. Try as I might, I cannot suck in my gut on that side, and it has made me a little lopsided and thrown my gait and posture off enough to be a problem when I hike.

For a person who has always loved to hike, living where I do in Marin County, home of the giant redwoods of Muir Woods, and some of the most spectacular hiking trails in the world, that has been difficult for me to take. But what keeps me going is the support of my wife and family, as well as the same tenacity of spirit that I took with me to Santa Cruz those many years ago. I love my work and the people I work with, and I love my patients. I cannot imagine leaving them. 


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My Gift to Myself

I continue to hike under the redwood trees and ultra-blue sky on the trails above my house in Marin, albeit a bit awkwardly. I am assisted by the orthotic AFO braces17 on my lower legs. They are made from lightweight carbon fiber and engineered to keep my toes up, so I don’t trip over myself. I also was recently fitted for a lumbar-thoracic corset of sorts that contains my lopsided belly, but I still haven’t gotten used to wearing it even though I know I should. It feels too constrictive. However, the most important and helpful present I gave myself on turning sixty last year was a new mountain bike. This one is special, and a little different than the rest. It is a top-of-the-line midnight blue Specialized Turbo Levo Expert Carbon18 electric mountain bike. It is a marvel of engineering and technology, and I ride it as often as I can. It makes me feel like I am twenty-two again as I pedal joyfully to the top of Mt. Tamalpais. It is without a doubt my most prized possession.

(Kate)  It’s dark in my childhood room at night and there’s a strange creaking sound by my door. I’m not used to sleeping here anymore. Five years have passed since I left home for college, and I am visiting for a while before I move away again. My brothers are both gone as well, and the house seems big and empty. I move the covers over my head to muffle the noise, and then “conveniently” realize I have not kissed my old Black Labrador, Coal, goodnight. The familiar yellow light leaking from under the door of my parent’s bedroom flows into me, and it makes me warm inside.

 I slowly open the door and see Coal sleeping, sprawled, all eighty pounds of him, on Mama’s legs, and she in turn nestles her head on Dad’s uneven shoulder. I imagine I left a permanent indent on that shoulder, where his muscles used to be – an indent from all those times I crawled onto those shoulders. An indent from the times I used his shoulder blades as handholds to lift myself up onto his back. An indent formed from constantly laying my head just beneath his chin and crying. To be honest, he still holds me up and helps me grow when I ask for support. 

 Mom’s hand moves to rest on his beautiful, lopsided stomach and stays there. They breathe in and out, all together as a unit – and I know as deeply as it is possible to know anything, that I am safe. 

 

References


  1. Michael P. Dosch CRNA PhD, Darin Tharp CRNA MS, The Anesthesia Gas Machine, University of Detroit Mercy – Nurse Anesthesia – https://healthprofessions.udmercy.edu/academics/na/agm/index.htm
  2. U.S. National Library of Medicine, Medline Plus. DUX4 gene. https://medlineplus.gov/genetics/gene/dux4/
  3. Muscular Dystrophy Association, Facioscapulohumeral Muscular Dystrophy (FSH, FSHD) https://www.mda.org/disease/facioscapulohumeral-muscular-dystrophy
  4. Sad Girls Club, Kate Swisher.  When we talk about our mothers’ bellies.  https://www.sadgirlsclublit.com/post/when-we-talk-about-our-mothers-bellies-kate-swisher
  5. Stanford in the Sierra, Summer Family Camp.  https://sierracamp.alumni.stanford.edu/family-camp
  6. University of California, Santa Cruz.  https://www.ucsc.edu/
  7. Pleasure Point, California
  8. Bonny Doon, California
  9. Specialized Stumpjumper, Wikipedia.  https://en.wikipedia.org/wiki/Specialized_Stumpjumper
  10. Northern California Anesthesia Physicians.  http://norcalanesthesia.com/
  11. Mountain Bike Review Forum.  https://products.mtbr.com/product/older-categories-bikes/2002-full-suspension/santa-cruz/blur.html
  12. Mayo Clinic, Foot Drop. Overview and Symptoms.  https://www.mayoclinic.org/diseases-conditions/foot-drop/symptoms-causes/syc-20372628
  13. Md Abu Bakar Siddiq, Israt Jahan, and SAM Masihuzzaman. National Library of Medicine.  Wallet Neuritis – An Example of Peripheral Sensitization, Published online 2018 Dec.  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6204659/
  14. This Is What An MRI Scan Sounds Like, YouTube. https://www.youtube.com/watch?v=7RgdWMyfqQc
  15. Sea Otter Classic, World’s Premier Cycling Festival 2021.  https://www.seaotterclassic.com/
  16. Allen Orthopedic Labs, Advanced Orthopedic and Prosthetic Treament. https://www.allenorthopediclabs.com/
  17. ottobocks orthotics, WalkOn ankle foot orthosis.  https://www.ottobockus.com/orthotics/solution-overview/ankle-brace-walkon/ 
  18. Turbo Levo Expert Carbon Mountain Bike.  https://www.specialized.com/us/en/turbo-levo-expert-carbon/p/184423?color=293238-184423

***

Financial disclosure: TDWI did not receive compensation for the publication of this story.

***

 

The Centers for Disease Control estimates that 0.3% of children age 6 – 17 years in the United States have received a diagnosis of Tourette syndrome (about 148,000 children)[1], but some reviews put this number as high as 0.9%[2].  At least half of children with this condition remain undiagnosed[3], a somber fact given the potential for significant adverse psychosocial impacts from this neurodevelopmental condition. TS is poorly understood amongst both the lay and physician community, leading to both misconceptions and stigmatization of individuals suffering from this treatable disorder.

What are tics?

Tics form the cornerstone of the diagnosis of TS[4]. They are involuntary or semi-voluntary, sudden, brief, intermittent, repetitive movements (motor tics) or noises (vocal tics).

These movements and noises often occur out of their normal context or in inappropriate situations, which makes them difficult to manage, because they can call attention to the individual experiencing them. This is especially true when the tics occur in an exaggerated, forceful or repetitive manner. Tics often come and go over time, without specific provocation, though they may be more intense or frequent during periods of stress, relaxation, concentration, or anxiety.

A defining feature of tics is that they are commonly preceded by a premonitory sensation or “urge”. Examples include a burning or itching of the eyes before an eye-blinking tic or tickling in the throat before a coughing tic. These sensations are temporarily relieved after the tic occurs, though some individuals may have to perform the tic a certain way until it feels “just right”.

Another well-recognized feature of tics is that they can be transiently suppressed by the person experiencing them, such that they may not manifest in all environments. Frequently, tics are also suggestible, meaning that mere discussion of the tics can provoke them. It is these latter two features – the suppressibility and the suggestibility – that often lend the assumption to observers that tics are a voluntary phenomenon, and that the person having them is doing them “on purpose”. This is, in truth, far from the lived reality of individuals with TS.

Tourette syndrome is more than just tics

TS is diagnosed when an individual is experiencing two or more motor tics and at least one vocal tic, although not necessarily concurrently[5].  These tics have to be present for at least one year and must have started before the age of 18 years.  Lastly, the tics should not be attributable to medications, drugs, or other medical conditions.

Many in the lay community believe, often reinforced by media portrayals, that TS is characterized by shouting obscenities (coprolalia) or making crude gestures (copropraxia) – yet these are not part of the diagnostic criteria and in fact, occur in a minority of patients.

–TS is associated with psychiatric and behavioral co-morbidities

The diagnostic criteria for TS also fail to draw attention to the fact that TS is highly associated with a variety of psychiatric and behavioral co-morbidities, which often also significantly contribute to symptom severity and psychosocial and/or educational difficulties[6]. In fact, over 50% of individuals with TS will also suffer from obsessive-compulsive disorder (OCD) and/or attention-deficit hyperactivity disorder (ADHD).

A variety of other conditions, such as mood and anxiety disorder, disruptive behaviors, eating disorders, substance use disorders, and suicidal ideation may also be present.  It is therefore extremely important that healthcare professionals interacting with patients who are exhibiting tics investigate the presence of these co-morbidities in order to better inform treatment.

–The need to determine the major source of disability

A second important step in the approach to patients with TS is to determine the major source of disability, because individuals may show various combinations of symptoms and symptom severity. For example, some may experience severe tics and little to no ADHD or OCD. Others may manifest tics and OCD without ADHD. And yet others may have severe ADHD with few tics or OCD.

The comorbidities, rather than the tics, may be the major driver of the psychological and psychosocial limitations experienced by individuals with TS[7]. A comprehensive assessment is therefore the best way to identify an appropriate treatment plan.

Stigma and lack of familiarity lead to reduced health-seeking behaviors for Tourette Syndrome

Individuals with TS are often stigmatized, with many reporting being subject to stereotypes, bullying, and discrimination as a consequence of their symptoms[8]. In addition, a frequent impression is that health care professionals have limited knowledge about the condition or how to treat it[9]which may stem from the common perception that “he/she will grow out of it”. It may lead some to avoid or delay seeking a diagnosis. 

Although it is recognized that the majority of individuals with TS will experience tic improvement by late adolescence, the co-morbidities often remain and may require ongoing treatment. In fact, 18% of children with TS become tic-free in adult life, 60% improve with minimal or mild tics remaining, while 22% continue to experience moderate or severe tics[10]

Even in the case of eventual tic improvement, the worst ever time period for tics is from 10-12 years of age[11] and it is estimated that about one-fifth of children with TS will experience symptoms to a degree that functioning in school was impossible or in severe jeopardy[12].  Despite this, access to care from specialists familiar with TS can be a limiting feature to receipt of appropriate care. Many patients and families have significant concerns about the medications needed to treat symptoms.

FDA-approved treatments for tics in TS can be poorly tolerated

The only medications approved in the United States by the Food and Drug Administration to treat tics associated with TS are haloperidol, pimozide, and aripiprazole. All three are neuroleptic medications whose effects on reducing tics relate to their dopamine receptor blocking qualities. They can, however, be poorly tolerated due to potential side effects such as somnolence, weight gain, cardiac effects, metabolic effects, and extrapyramidal symptoms (e.g., tremors and restlessness), amongst others[13].

These medications are often not listed as the first line of treatment in published guidelines for the treatment of TS, including the American Academy of Neurology Practice Guideline for treatment of tics, which recommends their use only when benefits outweigh risks and after physicians have appropriately counseled patients about the potential side effects[14]. Use of the lowest effective dose and ongoing monitoring for adverse effects are also recommended.

There are other treatment options for tics in Tourette Syndrome

Several alternate classes of medications have been investigated for the treatment of tics and are recommended in various guidelines. Alpha-2 agonists such as clonidine and guanfacine are useful medications when tics are mild but require treatment, and especially in individuals with co-morbid ADHD[15].  Their effects are thought to be mediated by reduced noradrenergic transmission, and potential side effects can include hypotension, bradycardia, and sedation.

Topiramate is an anti-epileptic medication that has been demonstrated to reduce tics in a randomized control trial[16] and has a different side effect profile, including the potential for paresthesias, cognitive slowing and kidney stones. Its tic reducing effects are attributed to the enhancement of gamma-aminobutyric acid (GABA) transmission. Other GABA agonists such as clonazepam and baclofen have been reported to reduce tics (although only in small studies) and may be used as adjunctive treatments.

Botulinum toxin injections may also be used to manage focal motor tics (such as blepharospastic or cervical dystonic tics) or vocal tics[17] [18], though they are not an efficient sole management strategy when multiple problematic tics are present. Finally, non-pharmacologic treatments such as habit reversal training (HRT) and cognitive behavioral intervention for tics (CBIT) are also effective in select patients[19] [20]. HRT includes awareness training, competing response training, and relaxation therapy/anxiety management, while CBIT combines elements of HRT with psychoeducation and function-based behavioral interventions.

New drugs with new mechanisms are under investigation

Recent years have seen an increase in the number of medications under investigation for tic management[21]. Vesicular monoamine transporter type 2 inhibitors offer an alternate method to reduce dopamine transmission with a more favorable side effect profile but recently completed clinical trials with deutetrabenazine and valbenazine failed to meet their primary endpoints, for reasons that are not yet well established. The selective D1 antagonist ecopipam (Emalex) has completed enrollment for a phase 2 study with results pending.

Considerable interest in the use of cannabinoids for the treatment of TS has developed based on multiple anecdotal reports of tic improvement following cannabis use and the recent legislation broadening access to medical marijuana. Small randomized trials of tetrahydrocannabinol (THC) have shown some positive effects but concerns about the use of these agents in children and long-term exposure to THC remain[22]

Clinical trials of THX-TS01 (Therapix Bioscienes) and Lu AG06466 (formerly ABX-1431, Lundbeck) have also been conducted. The former combines dronabinol (synthetic THC) with palmitoylethanolamide (a cannabinoid mimetic lipid molecule, which naturally occurs in plant/animal sources) while the latter is an enzyme that regulates the activity of the endocannabinoid system. Finally, D-cycloserine is a modulator of glutamatergic neurotransmission that is postulated to improve tics and is being investigated as a method to augment the effects of CBIT.

Multiple medications may be required to address various symptoms

While the variety of treatment options available and under investigation for the treatment of TS is encouraging, it is important to remember that these are focused primarily on tics. The need for assessment and management of co-morbidities remains.

When ADHD requires treatment, stimulant (amphetamine and methylphenidate-based) and non-stimulant treatments (alpha-2 agonists and atomoxetine) can be considered alongside tic medications[23]. Similarly for OCD, typical treatment strategies such as selective serotonin reuptake inhibitors (including sertraline, fluoxetine, paroxetine and fluvoxamine) and behavioral therapies should also be considered and offered when appropriate[24].

There is a need for a greater understanding of Tourette Syndrome 

TS can manifest with a combination of neurologic and psychiatric symptoms that have a complex interplay on the psychosocial functioning of individuals with this condition. It is essential for healthcare providers to recognize the principal manifestations in order to identify treatment options that can ultimately improve patients’ quality of life. Awareness and education can dispel misconceptions about this multifaceted condition, but when patients are offered an effective treatment strategy, there is also hope for minimizing disability and stigmatization.

References:

[1] Centers for Disease Control and Prevention. Prevalence of diagnosed Tourette Syndrome in persons aged 6-17 years – United States, 2007. Morb Mortal Wkly Rep. 2009; 58(21): 581-5. https://pubmed.ncbi.nlm.nih.gov/19498335/

[2] Scharf JM, Miller LL, Gauvin CA, Alabiso J, Mathews CA, Ben-Shlomo Y. Population prevalence of Tourette syndrome: a systematic review and meta-analysis. Mov Disord. 2015 Feb;30(2):221-8. https://pubmed.ncbi.nlm.nih.gov/25487709/

[3] Tourette Syndrome (TS), Centers for Disease Control and Prevention.   https://www.cdc.gov/ncbddd/tourette/data.html

[4] Jimenez-Shahed J. Medical and Surgical Treatments of Tourette Syndrome. Neurol Clin. 2020 May;38(2):349-366.  https://pubmed.ncbi.nlm.nih.gov/32279714/

[5] American Psychiatric Association: Diagnostic and Statistical Manual of Mental Disorders: Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition. Arlington, VA: American Psychiatric Association, 2013.  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3777342/

[6] Hirschtritt ME, Lee PC, Pauls DL, et al. Lifetime prevalence, age of risk, and genetic relationships of comorbid psychiatric disorders in Tourette syndrome. JAMA Psychiatry. 2015;72(4):325-333.  https://pubmed.ncbi.nlm.nih.gov/25671412/

[7] Eapen V, Crncec R. Tourette syndrome in children and adolescents: special considerations. J Psychosom Res. 2009 Dec;67(6):525-32. doi: 10.1016/j.jpsychores.2009.08.003. PMID: 19913657.  https://pubmed.ncbi.nlm.nih.gov/19913657/

[8] Malli MA, Forrester-Jones R, Murphy G. Stigma in youth with Tourette’s syndrome: a systematic review and synthesis. Eur Child Adolesc Psychiatry. 2016 Feb;25(2):127-39.  https://pubmed.ncbi.nlm.nih.gov/26316059/

[10] Groth C, Mol Debes N, Rask CU, Lange T, Skov L. Course of Tourette Syndrome and Comorbidities in a Large Prospective Clinical Study. J Am Acad Child Adolesc Psychiatry. 2017 Apr;56(4):304-312. https://pubmed.ncbi.nlm.nih.gov/28335874/

[11] Bloch MH, Peterson BS, Scahill L, et al. Adulthood outcome of tic and obsessive-compulsive symptom severity in children with Tourette syndrome. Arch Pediatr Adolesc Med. 2006;160(1):65-69. https://pubmed.ncbi.nlm.nih.gov/16389213/

[12] Leckman JF, Zhang H, Vitale A, et al. Course of tic severity in Tourette Syndrome: the first two decades. Pediatrics. 1998;102(1 Pt 1):14-19.  https://pubmed.ncbi.nlm.nih.gov/9651407/

[13] Mogwitz S, Buse J, Ehrlich S, et al. Clinical pharmacology of dopamine modulating agents in Tourette’s syndrome. Int Rev Neurobiol 2013;112:281–349.  https://pubmed.ncbi.nlm.nih.gov/24295625/

[14] Pringsheim T, Okun MS, MĂŒller-Vahl K, et al. Practice guideline recommendations summary: Treatment of tics in people with Tourette syndrome and chronic tic disorders. Neurology. 2019 May 7;92(19):896-906.  https://pubmed.ncbi.nlm.nih.gov/31061208/

[15] Weisman H, Qureshi IA, Leckman JF, et al. Systematic review: pharmacological treatment of tic disorders––efficacy of antipsychotic and alpha-2 adrenergic agonist agents. Neurosci Biobehav Rev 2013;37(6):1162–71.  https://pubmed.ncbi.nlm.nih.gov/23099282/

[16] Jankovic J, Jimenez-Shahed J, Brown LW. A randomised, double-blind, placebo controlled study of topiramate in the treatment of Tourette syndrome. J Neurol Neurosurg Psychiatry 2010;81(1):70–3.    https://pubmed.ncbi.nlm.nih.gov/19726418/

[17] Marras C, Andrews D, Sime E, et al. Botulinum toxin for simple motor tics: a randomized, double-blind, controlled clinical trial. Neurology 2001;56(5):605–10.  https://pubmed.ncbi.nlm.nih.gov/11245710/

[18] Porta M, Maggioni G, Ottaviani F, et al. Treatment of phonic tics in patients with Tourette’s syndrome using botulinum toxin type A. Neurol Sci 2004;24(6):420–3.  https://pubmed.ncbi.nlm.nih.gov/14767691/

[19] McGuire JF, Piacentini J, Brennan EA, et al. A meta-analysis of behavior therapy for Tourette syndrome. J Psychiatr Res 2014;50:106–12.  https://pubmed.ncbi.nlm.nih.gov/24398255/

[20] Dutta N, Cavanna AE. The effectiveness of habit reversal therapy in the treatment of Tourette syndrome and other chronic tic disorders: a systematic review. Funct Neurol 2013;28(1):7–12.    https://pubmed.ncbi.nlm.nih.gov/23731910/

[21] Quezada J, Coffman KA. Current Approaches and New Developments in the Pharmacological Management of Tourette Syndrome. CNS Drugs. 2018 Jan;32(1):33-45.  https://pubmed.ncbi.nlm.nih.gov/29335879/

[22] Medical Marijuana Research, Tourette Association of America.  https://tourette.org/research-medical/medical-marijuana-research/

[23] Rizzo R, Gulisano M, CalĂŹ PV, Curatolo P. Tourette Syndrome and comorbid ADHD: current pharmacological treatment options. Eur J Paediatr Neurol. 2013 Sep;17(5):421-8.  https://pubmed.ncbi.nlm.nih.gov/23473832/

[24] Rothenberger A, Roessner V. Psychopharmacotherapy of Obsessive-Compulsive Symptoms within the Framework of Tourette Syndrome. Curr Neuropharmacol. 2019;17(8):703-709.  https://pubmed.ncbi.nlm.nih.gov/30152283/

 

We have known for many years that people in the five to ten years before they qualify for Medicare have a significant burden of illness. For example, nearly a quarter of cancer cases diagnosed in the U.S. annually occur in people ages 55-64.[1]  In addition, the prevalence of chronic disease increases with age, and multimorbidity (having more than one disease) becomes more common.

It is no surprise, then, that health care costs also increase as we age. People over 55 account for more than 50% of the total health care spending in this country. Those between 55 and 64 are responsible for 20% of the total health spend even though they only make up 13% of the population. That is a step up compared to ages 45 and 54 who account for 13% of the population and 13% of the spend.[2] Our failure to provide universal health insurance coverage in this country means that a chunk of the pre-Medicare population is either uninsured or underinsured and therefore exposed to significant out-of-pocket expenses.

There has been a push to expand Medicare to everyone (“Medicare for All”) but failing some advocate for at least lowering the age of eligibility.[3]This would make coverage available to individuals in their high healthcare cost years. A study in the May 2021 issue of Health Affairs [4] reveals that uninsured older Americans have worse cancer outcomes than their slightly older counterparts who are covered by Medicare. This supports the idea that expanding Medicare eligibility to age 60 (or maybe lower) could have a significant impact on cancer outcomes, an important measure of health and well-being of people at any age.

What did the study hope to achieve?

The research team, led by Gerard Silvestri at the Medical University of South Caroline, wanted to assess differences in cancer survival between uninsured patients younger than age 65 and older Medicare beneficiaries. They used data from more than 1.2 million people in the National Cancer Database from 2004-2016 to answer the following questions:

  • What was the survival for sixteen different cancer types at one, two, and five years?
  • And, were differences in survival associated with differences in insurance coverage?

Patients were divided into 8 groups based on age and type of insurance or lack thereof as shown in Table 1 below.

Table 1. Uninsured cancer outcomes

 

They also did a comparison of the younger patients with either Medicare or private insurance with the older patients with Medicare only or Medicare with private insurance.

Other patient characteristics examined included race/ethnicity, a measure of comorbid illness burden and characteristics of their cancer (type, stage, and place of treatment.

What were the results?

The results showed what many of us would have expected knowing how important it is to have insurance to help pay for the high cost of care in the United States. Nevertheless, this study is important because it clearly showed a “dose-response” effect on survival that varied by the robustness of the coverage, ranging from none to excellent.

The study included survival curves by age and insurance status for three different cancers. Although the details differ, what is strikingly similar is that in each of the three cancers illustrated the best outcomes were for the younger patients (60-64) who had private insurance. The next best were Medicare patients (65-69) who had Medicare plus private insurance (also known as Medicare supplemental insurance. Medicare-only patients (65-69) were the lowest on the survival curves. And bringing up the bottom in every case were younger patients (60-64) who were uninsured.

The major findings can be summarized as follows:

  • Uninsured patients (60-64) were almost twice as likely to have late-stage disease when first diagnosed compared to older Medicare beneficiaries
  • They were also “significantly less likely” to get typical cancer treatments, such as surgery, chemotherapy, or radiotherapy
  • These differences occurred despite the younger patients having lower comorbidity (other conditions) than the Medicare-aged patients.
  • The younger patients also had what the authors called “strikingly lower” 5-year survival across all the cancer types in the study

An example of the last bullet point is that younger uninsured patients with late-stage breast or prostate cancer had a five-year survival that was 5-17 percent shorter than the older patients with Medicare.

The authors concluded that “survival after a diagnosis of cancer is considerably lower in younger uninsured patients than in older Medicare patients.”

Some caveats about the research

The study is what we call an observational study. The researchers examined a database of patients in the US that captures about 72 percent of newly diagnosed cancer patients. They used that data to look for associations between age (pre-Medicare and Medicare age) and insurance status. Because it is retrospective (looking at the past) and there is no control (or reference) group, you can’t be sure that lack of insurance actually was the reason why the uninsured group had the poorest outcomes. The outcomes could have partially or completely due to other things in their life that were not measured in this study. A different type of study is needed to determine a causal relationship – that is to determine if the lack of insurance was what led to (or caused) the unfavorable result.

Nevertheless, studies of this type are valuable as they can much more easily and quickly uncover associations that we might not have recognized. They often provide the impetus for more definitive studies to be carried out.

What are the implications of this study?

This study is important because it suggests that lack of insurance is associated with worse cancer outcomes – something that is devastating for patients and their families. There is also a high societal cost related to prematurely losing the lives of patients during their working years. I believe (as did the authors) that this study can be used by policymakers and advocates to make the case for expanding Medicare eligibility to at least age 60.

You may think that this is too expensive and that we just cannot afford it. Leaving aside the fact that the US is one of the only Western countries that fails to provide universal health coverage, think about this: Our failure to diagnose cancer patients at an early stage means that they will likely need more expensive treatments (e.g., more extensive surgery, more rounds of chemo or radiation). And even if they don’t get it while they are pre-Medicare (as this study suggests), a portion of them will age into Medicare bringing these higher costs of care with them.

The authors point out that insurance alone “would not eliminate the health disparities facing underserved Americans with cancer,” prior studies on health insurance status suggest strongly that it would definitely help low-resource people have better and earlier access to care.

References:

1.  Mallin K, Browner A, Palis B, et al. Incident cases captured in the National Cancer Database compared with those in U.S. population-based central cancer registries in 2012-2014. Ann Surg Oncol 2019:26(6):1604-12

2.Sawyer B, Claxton G. How do health expenditures vary across the population? Peterson KFF Health System Tracker, Jan. 16, 2019. https://www.healthsystemtracker.org/chart-collection/health-expenditures-vary-across-population/#item-start

3. Ghilarducci T. The time is now to lower the Medicare age to 50. Forbes 2020 Apr 10. https://www.forbes.com/sites/teresaghilarducci/2020/04/10/now-more-than-ever-is-time-to-lower-medicares-age-to-50/?sh=5b317bd852be

4. Silvestri G, Jamal A, Yabroff K, et al. Cancer Outcomes Among Medicare Beneficiaries and Their Younger Uninsured Counterparts. Health Affairs 202140(5)754-762