This autoimmune disease affects 700,000 people, but many have never heard of it

Lotus Mallbris, MD, PhD, leads the global clinical development and medical affairs teams supporting Eli Lilly and Company’s immunology portfolio. She is a dermatologist with experience treating patients who have alopecia areata, an autoimmune disorder that attacks hair follicles and causes well-defined, coin-shaped patches of nonscarring hair loss. Alopecia areata is commonly dismissed as a cosmetic inconvenience, but is a serious disease that recently found its way into national headlines.

In this conversation, Dr. Mallbris discusses the current state of alopecia areata and outlines steps to better meet the needs of those living with the disease and the healthcare providers who treat them.

Q: It is safe to say that many people had not heard of alopecia areata, or AA, before it was brought to the attention of millions during this year’s Academy Awards. Was anything constructive achieved from that viral moment?

A: That night, we saw in microcosm what many of the approximately 700,000 people in the United States with AA can experience in their lives¹. Since hair loss is the predominant symptom of AA, the disease can commonly – and mistakenly – be viewed as a cosmetic condition rather than the serious autoimmune disease it is. And for those living with AA, the burden can be unrelenting. It is important to expand our societal understanding of this disease and its various effects so it can be treated similarly to other serious chronic illnesses rather than viewed as a cosmetic inconvenience.

Q: Since we can only see the hair loss in AA patients, what actually distinguishes these individuals from those with, say, age-related hair thinning or pattern baldness?

A: Alopecia areata occurs when the immune system attacks the hair follicles². It can happen to anyone at any age at any time, however, the mean age of onset is 25 to 36 years old³. Alopecia areata may also have a relapsing and remitting disease course and people living with the disease may experience repeated and unpredictable cycles of both hair loss and growth. And because many individuals with autoimmune diseases tend to live with other medical conditions like hyperlipidemia, hypertension, and thyroid disorders⁴, their health care can often be difficult and complex.

And I would be remiss if I did not mention the other burdens involved with this disease. People with AA can experience increased rates of anxiety, depression, and decreased health-related quality of life. A key element of the FDA’s The Voice of The Patient: Alopecia Areata report⁵ was participants’ descriptions about how the impact of AA goes far beyond hair loss and can touch many aspects of their daily life.

Unfortunately, there are currently no FDA-approved treatments for AA, so patients and providers use other approaches to manage the disease.

Q: You mentioned that there are no current FDA-approved treatments for AA. Given that fact, what can be done from a health policy standpoint for people living with the disease?

A: First, it is important to note that while there are no current FDA-approved treatments for AA, there are a number of investigational therapies for AA in development today. If approved for use, these medicines could offer new options in the fight against the disease. However, the introduction of these medicines can also raise the critical issue of access. Right now, most treatment approaches for alopecia areata use medicines not specifically approved to treat the disease, which can make it difficult to obtain insurance coverage. Coupled with other insurance practices such as step therapy, co-pays, claim denials, and challenging appeals processes, it can be difficult to access the right care. It is critical that those living with the disease and their healthcare providers have appropriate access to treatments so they can pursue the optimal care path they identify – with the least interruption.

Q: So, it would seem that it is not just society broadly that can perceive AA as a cosmetic matter, but that there is also a misconception from a policy and coverage standpoint?

A: In many corners, yes, and this lack of access can bring about tangible and significant burdens for people living with AA – physically, emotionally, and financially. Health care costs for people living with AA are higher than the population at large⁶. For example, a person living with AA may seek mental health care due to the emotional ramifications of the disease. And a critical aspect for many living with AA – the use and purchase of wigs and other camouflage and cosmetic tools – is not typically covered by health insurance plans.

Q: So, what can and should be done for the roughly 700,000 people who have alopecia areata?

A: First, we need to ensure that we continue to invest in research that informs the next generation of alopecia areata care. Secondly, it is critically important that a pathway to coverage for future FDA-approved treatments is well-defined and patient-centered so people living with AA and those treating them can have great access to care.

There are other important steps that should also be taken. Access barriers for the treatment of AA comorbidities should be alleviated. Cost-sharing policies should be affordable so that AA patients are not facing onerous financial burdens. And health plan policies that preclude coverage for treatments, services, and other approaches, such as wigs, associated with AA-related hair loss should be rescinded.

Finally, and most importantly, alopecia areata must be treated as the serious autoimmune disease it is and not merely as the cosmetic concern many believe it to be.

Reference links

This autoimmune disease affects 700,000 people, but many have never heard of it — Dr. Lotus Mallbris explains why

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