In September 2017, the U.S. Food and Drug Administration (FDA) held a patient-focused drug development meeting focused exclusively on the autoimmune condition alopecia areata. The goal was to collect patient perspectives on current and potential treatment options and learn about the ways alopecia areata impacts the patients’ everyday lives. Obtaining this important meeting was made possible by the tireless advocacy efforts of the National Alopecia Areata Foundation in which we urged our lawmakers to speak on our behalf to the FDA. And the centerpiece of those efforts is our Hill Day.
Speaking out
Each year, NAAF brings a contingent of our most active patient advocates, the Legislative Liaisons, to Capitol Hill for meetings with their congressional representatives and senators. This Hill Day has been a staple of NAAF’s advocacy outreach since the creation of the Legislative Liaison program in 2012, and it is rewarding to see the fruits of our relationship-building as legislators and staff now recognize us and have a greater familiarity with alopecia areata. In these meetings, we discuss the need for increased funding for the National Institutes of Health, and because the Affordable Health Care Act still faces possible repeal we request that any replacement legislation maintain these four pillars of patient protection:
- Maintain the prohibition against pre-existing condition discrimination
- Allow dependents to stay on family insurance until age 26
- Continue to prohibit lifetime and annual caps on insurance coverage
- Limit out-of-pocket costs for patients in a meaningful way
Currently we’re also asking House members to co-sponsor H.R. 2925 which would re-categorize cranial prosthetics (i.e. wigs) as durable medical equipment and allow Medicare to provide coverage if a doctor certifies that they are medically necessary. Unfortunately, most insurance plans do not cover the cost of a cranial prosthetic for those with alopecia areata and with the passage of this legislation, we hope to reverse that inequity with the end goal that private insurers will follow suit.
Patient engagement
The importance of patient engagement in the research process cannot be understated. As the scientific community and pharmaceutical companies begin to develop treatments, it is essential that patient voices and experiences are heard and understood so that the treatments that are developed are meaningful to those living with alopecia areata. We want to increase the number of successful ongoing research studies for the benefit of patients with alopecia areata. And for that we need patient involvement.
In 2015, in an effort to build bridges of understanding between the patient community and the researchers and clinicians that design and deliver treatments, the National Alopecia Areata Foundation launched the Health and Research Ambassador Program (HARA). The HARA Program is an innovative approach to engage both patient partners and the research community. The HARA ambassadors’ personal experience with alopecia areata, and their growing knowledge of the health and research field make them ideal ambassadors and liaisons to gather information from patients and become an important and trusted voice within the research community, enabling them to push for the most meaningful outcomes and the treatment or cure with the most desired results.
In 2016, NAAF set out to train the patient community in patient centered outcomes research. This effort was funded by a Patient-Centered Outcomes Research Institute Eugene Washington Patient Engagement Award (1428). Since that time, this patient-led program has trained over 400 community members, many of whom are now actively engaged with the tools and the language necessary to advocate for meaningful research outcomes.
