In 1967, Cynthia A. of Savannah, GA was diagnosed with juvenile idiopathic rheumatoid arthritis at age thirteen. More than fifty years later, she’s become an expert at navigating her health insurance benefits, fighting for every prescription she needs. This February, Cynthia spent over eight hours on the phone just to transfer a prescription, a process made deliberately complex because she was required to secure prior authorization before the prescription could be filled. Notably, she’s been successfully using the biologic she needed for years—she merely wanted to collect it from a more convenient pharmacy.

Prior authorization is one of several onerous and time-consuming tactics that health insurers implement to try to prevent inappropriate prescribing by physicians and control drug costs. In Cynthia’s case, it meant insurers asking her doctor to fill out duplicative forms on a Friday—when his office is normally closed. While her doctor was available to speak with her health insurance representative on the phone, only faxed paperwork would suffice. But even if Cynthia’s doctor was sitting next to a fax machine, her health insurance provider could take as long as 72 hours to approve the prior authorization and expedite her prescription, a very long wait for a person with a chronic disease experiencing a painful flare and in need of medication. Ultimately, Cynthia opted to pay out of pocket for her monthly medication dose to the tune of $6,500 (for two shots) and hoped that the following week she could get reimbursed when her doctor provided all the necessary (and previously submitted) paperwork. Imagine people who could not afford to pay in advance?

Related Content: New Long-Term Care Benefits Added to Medicare Advantage Plans

The cookie cutter approach doesn’t work

People living with chronic disease—whether it’s arthritis, diabetes, heart disease, migraine, and more—rely on stable access to prescribed medications. As a patient myself, I understand the frustration of being asked to jump through hoops to satisfy complex insurance protocols and paperwork.

Prior authorization is just one maneuver that delays medication access, diagnostic tests, or other services. Many people with chronic disease are also forced into step therapy (“fail first”), meaning they must try less expensive, often older, medications before being approved for the medication prescribed by their doctor. Others find that their medication is suddenly unavailable or prohibitively expensive if the drug formulary in their plan changes without warning in the middle of a contract year, which is an experience called non-medical switching. While in some specific instances, health insurance “utilization management” rules can be an appropriate way to reduce drug costs, when applied to more complex diseases and conditions, it can be unethical, prolong suffering, exacerbate disease, and increase cost. It also interferes with the doctor-patient relationship.

The main problem with health insurance protocols is that they are “one size fits all”. The recent news reporting that an Aetna-employed medical director denied claims without reviewing medical histories should be a wake-up call that each patient needs to be treated as an individual.

Creating patient advocates

As an experienced patient as well as a caregiver to her late husband who also had a serious illness, Cynthia understands the ins and out of her health insurance coverage. Annually, she reads her contract carefully to ensure that the plan meets her needs. She makes calls, sends emails, and works with her doctors’ offices to ensure paperwork is sent. Ultimately, every patient living with chronic disease needs to be as proactive as Cynthia to secure the very best healthcare available. Admittedly, it’s unfair to place this burden solely on the shoulders of people already managing the reality of a lifelong, serious illness, but it’s also necessary.

To help other chronic disease patients feel empowered to secure the very best possible care, Global Healthy Living Foundation (GHLF) just published “A Patient’s Guide to Healthcare: 2018 Edition.” The new publication defines commonly used terminology, explains how to get the most from insurance coverage (across all types of insurance), and empowers patients to advocate for themselves and the chronic disease community. GHLF published this comprehensive guide—which is available to everyone—in response to the frustration expressed by the patient community regarding the amount of time and effort expended by themselves and their healthcare team trying to get their prescribed medicines or diagnostic tests. GHLF wants to help chronic disease patients understand and fight for their benefits—which they pay premiums and deductibles for the privilege of enjoying.

Patience, persistence, and politeness

Regardless if a person has private, public or combination health insurance coverage, to get the most from purchased benefits, chronic disease patients must implement three important P’s to get through the inevitable and unavoidable paperwork: Patience, Persistence, and Politeness.

Patience:

Insurance claims are formal requests to cover certain treatments under the insurance policy. Forms are not standardized and often cause delays. Therefore, a certain amount of patience is required while the insurance company reviews paperwork or works with the doctor’s office to secure access to medical records. Chronic disease patients can help this process by remaining calm and by keeping personal records of medical appointments, prescriptions, phone calls, and any other items that may help to smooth the delivery of a health service or prescription.

Persistence:

The adage “the squeaky wheel gets the grease” applies to healthcare. Chronic disease patients benefit from persistently advocating for their treatments. Health insurer websites and/or customer service lines are available to customers to answer questions and check the status of claims.

Politeness:

Dealing with a chronic illness is hard. Dealing with a customer service representative can sometimes feel harder. Despite the frustration, maintaining a polite tone can help to motivate those working at the insurance company to work more productively on your behalf.

Community advocates

A person with arthritis (or any other chronic disease) is not singular. They are part of a community of people who are living their lives despite having a chronic disease. One single patient can positively impact the experience of healthcare when they amplify their voice and share their experience. Getting started as a patient advocate starts with identifying an issue and finding an audience. For example, are you concerned about step therapy? Many state legislatures are writing laws to define how health insurance companies respond to claims and in what time frame. A patient advocate can start by writing letters to their representatives. You can also learn more about issues facing the chronic disease community and how to communicate about them via the 50-State Networ.

The debate about our healthcare system will continue for years in the United States. What is already complex will not get simpler any time soon. It’s up to patients and their loved ones to advocate for themselves and on behalf of the community to receive the very best healthcare, and the aim of GHLF’s Healthcare User Guide: 2018 Edition, is to educate and empower the chronic disease patient community.