Last year, Nicole Friedland, NAAF President and CEO, participated in an expert steering committee, the Alopecia Areata Consensus Task Force, that produced a white paper titled Challenges in Alopecia Areata and Opportunities to Drive Change; A Global Multi-Stakeholder Consensus. It was published this past January. The white paper was spearheaded by Pfizer and guided by a number of key opinion leaders – dermatologists, researchers, patient advocates, and other stakeholders – from several countries, including the United States. The goal of the paper was to identify and explain the unmet needs surrounding alopecia areata (AA) and explore global perspectives on the issues. The authors gathered their information by searching through the medical literature to find articles related to AA; interviewing representatives from leading AA and dermatology patient advocacy groups; and reviewing websites and articles dedicated to AA. After this, the group produced a survey, followed by meetings with advisory boards to discuss the topics that arose. White Paper’s Findings Alopecia areata affects about 2% of the U.S. population, often occurring before the age of 20. Yet the disease is still misunderstood by many among both the public and healthcare professionals. The white paper focused on three key areas of unmet need among those who live with AA: Delays to diagnosis Unequal and inadequate treatment Lower quality of life for both those with AA and their caregivers Challenge 1: The delays in getting a diagnosis “An individual may not understand what the disease they have is… or who to go to.” Since AA is a relatively unknown disease, most people don’t recognize hair loss as a serious issue. They could believe it is the result of other reasons, like stress or some other cause that they wouldn’t ask a doctor about. The perceived lack of urgency or seriousness often leads people to seek out alternative help. For example, in Turkey and Brazil, many AA patients visited hair centers or beauticians instead of seeing a doctor. By the time people do see a doctor or primary care provider, many of the professionals don’t recognize the hair loss for what it is, further delaying diagnosis. Challenge 2: Unequal and inadequate treatment “For AA, we have no guidelines, we don’t know the standard treatment protocol.” Research is moving ahead for AA and new drugs have been approved for AA treatment in some countries. However, there aren’t any universal guidelines for treating AA, which means that dermatologists who don’t fully understand the disease might not provide the newer treatment options to their patients, relying instead on older, out-dated beliefs about the true causes of the disease. Knowledge about AA and its treatment also varies between countries. Challenge 3: Lowered quality of life for both those with AA and their caregivers “[You often hear] I’ve lost my identity because I’ve lost my hair.” The effects of AA are mainly psychosocial and they can have a significant impact on a person’s quality of life. The fact that few people understand AA as a disease leads to lower understanding of the psychosocial effects and inadequate support. The lack of support ranges from social connections to mental health needs. If doctors don’t understand or acknowledge the holistic burden of AA, they may not be strong advocates for their patients seeking psychosocial help, whether it be with referrals to other professionals or helping support health insurance claims. The multi-stakeholder collaboration led to several conclusions that included raising awareness that AA is not just a cosmetic disorder, but a chronic autoimmune disease that requires proper care; there needs to be universal guidelines that guide treatment for the patient as a whole to be implemented worldwide; and that people with AA and their caregivers need adequate information and support to navigate their journey through AA care. To read the full whitepaper, click here.
