At 4:29 PM on May 26, 2016, my husband’s doctor said to him,
“I have bad news. You have cancer.“
As a medical oncologist, I have delivered those words countless times to my patients. But I now understood in a way I could not before, how this news can turn one’s world on its axis. I have seen the unprecedented uncertainty my patients and their loved ones face when I confirm a cancer diagnosis.
Many decisions have to be made quickly
Decisions have to be made—often quickly:
- What is the best treatment path?
- How will I tolerate the next weeks and months?
- Will I be able to work?
- How will my family cope?
My personal journey after my husband’s diagnosis made me more acutely aware that despite tremendous advances in detecting, diagnosing, and treating cancer, uncertainty remains a potent side effect of the disease.
The uncertainty of coverage for cancer care
Now, imagine adding on worry and uncertainty about what changes may come with continued assaults on the Affordable Care Act (ACA). How will these changes to, or elimination of, the ACA affect your ability to access cancer care?
Will you continue to have health coverage? Will you be able to afford the cost of your care? And if not, will you have to stop life-saving treatment?
Even as a healthcare professional with a stable job and comfortable income, I felt the pressure of these concerns. And, I worried about what would happen to my husband’s care if I no longer had a job with insurance benefits.
The future of healthcare in America
In Washington, D.C., the debate about the future of the Affordable Care Act (ACA) continues even though multiple attempts in Congress to “repeal and replace” it have failed.
In the latest attempt to undo Obamacare, a federal judge declared the ACA unconstitutional. The case has been appealed and is now expected to be heard by the Supreme Court later this year. So, the uncertainty about its fate drags on.
Meanwhile, cancer patients and survivors across the country are coping with fears about access to health insurance coverage, affordability of that coverage, and access to care.
Worries about coverage for cancer care are compounded when there is financial instability
Worries about health insurance are significantly compounded for those without financial stability. This issue was highlighted in this Washington Post article. As one cancer survivor interviewed for the article commented,
“For cancer survivors, we literally live and die by insurance.”
To put this in perspective, consider that in 2016, the American Cancer Society estimated that there were 15.5 million cancer survivors in the U.S., which is approximately 4.8% of the population. According to the National Institutes of Health, this number is expected to rise to almost 20.3 million by 2026.
The good news is that the overall cancer death rate is declining and cancer survivors are increasing. However, there is still much work to be done. This is particularly important as risk factors such as aging and obesity are expected to increase cancer rates.
Related content: Why You Need to Prioritize Getting the Right Healthcare Coverage
Association of Community Cancer Centers
In my more than 20 years as a practicing medical oncologist, I’ve had the privilege of caring for patients in rural communities, as well as in urban and academic settings.
My experience as a physician, as a past president of the Association of Community Cancer Centers (ACCC), and as the spouse of a cancer patient, has driven home some certainties.
- I am certain that every day in cancer programs across the country, multidisciplinary teams are delivering quality cancer care to patients in their home communities.
- Further, I am certain that these patients are anxious for our healthcare system to right itself. They need and want treatment now.
- Finally, I am also certain that cancer patients do not need the added stress of worrying about accessing care. And, neither do healthcare providers on the frontlines of cancer care delivery.
Over the past several years, the oncology community has increasingly come to understand the critical need to address the financial burden cancer can place on patients and their loved ones. The economic havoc cancer can wreak impacts those at all income levels of our society. That includes insured and uninsured, young and old, those living in urban as well as rural communities.
Cost of cancer care drugs is a top concern
A 2016 survey by the Association of Community Cancer Centers’ (ACCC) on trends in cancer programs found nearly all healthcare professionals (83%) reported the cost of cancer care drugs is the top challenge and concern. It is followed by reimbursement of patient care services like financial advocacy and nurse navigation.
In response, many cancer programs and providers across the country have added financial advocates or financial navigators to their staff. The survey also found that 64% of healthcare professionals are offering cancer patients the services of financial advocates or counselors.
These new members of the cancer care team help patients through the intricacies of health insurance plan coverage. They also help with issues related to pre-certification/prior authorization processes, accessing patient assistance programs, and more.
Through its Financial Advocacy Network, the Association of Community Cancer Centers provides tools and resources such as their Financial Advocacy Boot Camp. This online curriculum trains advocates to help cancer patients navigate the complex and fragmented healthcare system to pay for their treatment.
Cancer is policy agnostic
Cancer is policy agnostic. It won’t wait while politicians and policymakers debate how best to reform the U.S. healthcare system.
As we await the decision of the Supreme Court on the ACA and the outcome of the upcoming Presidential election, we need to remember why we set out to tackle this issue in the first place. Simply stated, it is to improve the care provided to all Americans.
Congress has the power to put aside partisanship and build on the undisputed improvements made through the ACA.
Congress has the power to provide clarity about how these improvements will affect our nation’s cancer patients, their families, and their healthcare providers.
Moreover, Congress has the power—and the responsibility—to ensure their constituents that patient-centered protections supporting access to care will remain.
The Trump administration and Congress have the power to alleviate some of the unbearable uncertainty for cancer patients and their families. As you decide what direction to take, we ask that you put patients first.
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Originally published on 4/8/2017, this post was reviewed and updated by TDWI editors for republication on 5/2/20.