Addressing the Needs of People Living With Autoimmune Disorders: A Conversation With Molly Murray

March marks Autoimmune Awareness Month, a time to call greater attention to the many challenges people living with autoimmune conditions face for a host of reasons including differences in the presentation and severity of their diseases.  One of the organizations leading these efforts is the Autoimmune Association, a group dedicated to raising awareness, empowering and educating patients, supporting research, and advocating for patient-centered policies.

We caught up with Molly Murray, president and CEO of the Autoimmune Association, to learn more about the importance of understanding how individual patient differences affect the treatment of autoimmune conditions, as well as the challenges her community faces in navigating the complex and ever-changing health care and insurance system.

NPC: March is Autoimmune Awareness Month. Why is raising awareness and understanding such an important part of your mission to support people living with autoimmune conditions?

Molly Murray: Many people may not realize that there are more than 100 different autoimmune diseases with varying symptoms and severity. Those realities make autoimmune diseases complex, difficult to diagnose, and challenging to find the right treatment. Awareness, education, and support are vital to helping people living with autoimmune diseases – starting with symptom recognition, diagnosis, treatment, and living well with these diseases. Raising awareness can help shorten the time between diagnosis and treatment, which helps people avoid damage to their health that they may not be able to repair.

NPC: Why do so many people with autoimmune conditions struggle just to get an accurate diagnosis? To find a treatment regimen that works for them?

MM: Since these diseases attack the immune system differently, depending on the individual, the symptoms and severity of those symptoms can vary. Think about immune responses. They can involve fatigue, low-grade fever, joint swelling and pain, digestive issues, skin reactions, and a host of other symptoms that could be associated with a number of autoimmune or other acute or chronic conditions. Often, an accurate diagnosis requires ruling out a host of other conditions and may involve different physician specialists.

Some people are incorrectly diagnosed with a variety of conditions that have no specific blood test to confirm the diagnosis. We have heard from patients who were told their symptoms were “in their heads” or that they were under too much stress. Others have been labeled as chronic complainers or were told that they were overly concerned with their health in the earliest stages of their illnesses. On average, autoimmune patients see four different doctors over a four-year period before a diagnosis is made.

NPC: How does coverage factor into the diagnosis and treatment challenges facing people living with autoimmune conditions?  

MM: Along with challenges with getting an accurate diagnosis, people with autoimmune diseases face numerous barriers to coverage. Unfortunately, people confront coverage barriers after diagnosis and identifying the right treatment regimen for their condition. People face high deductibles that renew at the start of the year. Other out-of-pockets costs include coinsurance instead of fixed copayments for medications, where patients have to pay a percentage of the cost of their medicines instead of a fixed amount. That’s assuming that patients are able to access those medicines and aren’t subject to tiered formularies and “fail first” policies, which require them to try and fail on multiple medicines before accessing the one their doctor recommends. Every barrier to coverage means delays, and for people with autoimmune diseases, delays mean poorer health outcomes, greater disability, and health losses that cannot be regained.

NPC: What are some of the key policy areas where the Autoimmune Association wants to see improvements in coverage? How would those changes help patients?

MM: We support changes that reduce the high out-of-pocket costs patients face. That includes making affordable health care coverage available that does not involve high deductibles. We support policies that eliminate health plan use of “copay accumulators,” where patient assistance is not counted toward meeting patient deductibles. Several states have adopted legislation that forbids health plans from not counting patient assistance coupons and out-of-pocket cost assistance toward meeting deductibles. Step therapy is another area of significant concern. These policies force patients to try and fail on one – and often multiple – therapies before a health plan will cover the therapy their doctors originally prescribed. These policies are often driven by financial considerations to the benefit of the plan instead of clinical considerations to the benefit of the patient.  

Course correcting these polices would be absolute game-changers for autoimmune patients in terms of enhancing access to needed care, ensuring the affordability of that care, and improving adherence to treatment.

NPC: As NPC’s The Myth of Average research highlights, many patients struggle to gain meaningful access to the medications they need due to their benefit design and/or insurance practices like prior authorization or step therapy. How are patients with autoimmune conditions affected by these practices? What can health care payers and other stakeholders do to improve patient access?

MM: The idea of an “average patient” is difficult to define from an autoimmune disease standpoint as people’s symptoms, severity, and response to treatment can all differ. That’s why this research speaks to the autoimmune patient’s experience. We’re moving closer to personalized treatment in medicine, but that progress and the health benefits are severely limited by one-size-fits-all coverage policies.  

We often hear from patients dealing with step therapy. We also hear from providers who share their frustrations with helping their patients get the therapies that will work based on their clinical judgment and knowledge of their patients. Disruptions in care can lead to disease flare-ups, progression, and permanent damage. Frustrated with the process and unsure about their options, patients may abandon care and suffer for it. They may limit themselves to suboptimal therapy and suffer the negative impacts on their health, including avoidable side effects. The toll on patients and their health is significant. The Autoimmune Association places paramount importance on efforts that will lead to better informed coverage policies that put patients’ health first.

NPC: Ultimately, employers and government payers have a lot of power to stop reliance on a mythical “average patient” when designing benefits. What should employers and government payers consider when thinking about these issues?

MM: Autoimmune conditions predominately affect women and often during their prime working years. The associated disability from under-diagnosed and poorly treated autoimmune conditions affects the U.S. workforce and economy significantly. Premature disability removes people from the workforce, places extra burden on caregivers, and puts added pressures on an already tight labor market. Health plans respond to their customers, so employers, government payors, and employer benefit consultants could yield a great deal of influence in informing coverage policies.

We also caution these decision-makers to avoid limiting their considerations on coverage to value assessments that narrowly confine “value” to cost offsets in the health care system. Instead, we ask that they consider new value assessment methodologies, such as multi-criterion decision analysis (MCDA), that capture the priorities and needs of individual patients. With autoimmune conditions, avoidance of disability, limiting disease progression, and quality of life are among the hugely important benefits that should be weighted in any value assessment tool.

Learn more about autoimmune disease by visiting the Autoimmune Association’s website.