Hair loss is not just a problem for old men. It may be a problem for both men and women, associated with aging and heredity. But it can also be a sign of a problem called alopecia areata, which is an autoimmune disorder that attacks hair follicles and causes well-defined, coin-shaped patches of nonscarring hair loss.
One of the most famous victims of the disorder was John D. Rockefeller who had a severe form called alopecia universalis causing him to lose the hair on his entire body, including his eyebrows. He is said to have had three wigs custom made, one with short hair, one medium, and one longer so it would look like he needed a haircut.
But most cases, like that of Jada Pinkett Smith, are not that profound. You may not have heard of alopecia areata (AA) before it became a source of attention during this year’s Academy Awards.
Even then, the slap got much more attention than the medical problem that was at the root of Chris Rock’s controversial joke.
Approximately 700,000 people in the US experience AA. Since hair loss is the predominant symptom of AA, the disease can be mistakenly viewed as a cosmetic condition rather than the serious autoimmune disease it is.
Alopecia areata occurs when the immune system attacks the hair follicles. It can happen to anyone at any age at any time, however, the average age of onset is 25 to 36 years old. 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.
Because many individuals with autoimmune diseases tend to live with other medical conditions like hyperlipidemia, hypertension and thyroid disorders, their health care can often be difficult and complex.
People with AA can experience increased rates of anxiety, depression and decreased health-related quality of life.
Unfortunately, there are currently no FDA-approved treatments for AA, so patients and providers use multiple approaches to manage the disease. But 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.
The victims of this disorder can become very frustrated and sensitive regarding it. A person living with AA may seek mental health care due to the emotional ramifications of the disease.
Another critical aspect for many living with AA is the use and purchase of wigs and other camouflage and cosmetic tools, which are not typically covered by health insurance plans.
For the future benefit of AA patients, further investment in research will be needed to create the next generation of alopecia areata care. Also, 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 can have appropriate access to care.
Insurance and cost-sharing policies should be affordable so that AA patients do not face serious financial burdens. Health plan policies should include coverage for treatments, services, and other approaches, such as wigs, associated with AA-related hair loss.
Finally, 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 or the butt of insensitive jokes.