By Mark Lebwohl, MD, December 01, 2015
As we close the books on 2015, I think about all of the patients I have seen over the year and how much we, as a specialty, have done to advocate on their behalf. We have written letters to insurance companies to ensure that our patients have access to treatments. We’ve called and emailed our members of Congress to fight for medical research funding and adequate provider networks. Our actions have been relentless. We’ve done quite a bit as a specialty, but our advocacy efforts really culminated at the AADA Legislative Conference — held annually in Washington, D.C.
I attended this year’s conference in September, where we had a record-breaking 177 attendees. We discussed many of the issues on our collective plate, and we took these issues to Capitol Hill, where on the final day of the Conference, we met with 216 congressional offices.
First and foremost, we focused on increasing patient access to treatments. Many insurance providers have created “specialty tiers” for biologic and specialty medications that require the patient to foot a high portion of the cost of medications. As a group, we asked members of the House to cosponsor HR 1600, the Patients’ Access to Treatment Act, which would limit patients’ cost-sharing requirements and improve patients’ access to those drugs that fall in the specialty drug tier.
We also educated members of Congress and their staff on a troubling trend — where insurers have been narrowing the physician networks in their health plans — which is threatening patient access to specialty care. Subsequently, we asked members of the House to cosponsor the Medicare Advantage Bill of Rights Act, which would improve transparency in the MA insurance market by prohibiting MA plans from removing providers mid-year, and would ensure that continuity of care requirements are satisfied when a provider is terminated from a network plan.
We also discussed how we could elevate public health as a priority at the policy level by promoting skin cancer prevention, raising awareness of skin diseases, and prioritizing funding for medical research. I met with Rep. Dan Donovan, and the aides to Reps. Jerrold Nadler and Carolyn Maloney, as well as Sens. Kirsten Gillibrand and Chuck Schumer. I am confident that all of our messages — in my meetings, and in the other Hill meetings that occurred at the Legislative Conference — were well-received because fortunately we had representatives from 17 patient organizations join us. This allowed our members of Congress to hear first-hand how these conditions and the policies that determine their treatment options affect our patients.
For example, in my meetings, I explained how vitiligo is an autoimmune pigmentary disorder that has a tremendous impact on patients’ mental and physical well-being. Unfortunately, treatments for vitiligo — as well as other skin conditions — are often considered cosmetic or experimental and as such are not FDA-approved or covered by insurance. In these meetings, we called on these officials to influence a positive change in coverage for these treatments that are currently available for conditions like vitiligo, but are not accessible.
In keeping with my pledge to make my year as Academy President the Year of the Patient, I encourage all Academy members to remain engaged in advocating for our patients, with our patients. Our collaboration with these groups makes all the difference on the Hill, because while we are a vocal specialty, the clout that our patients’ voices have cannot be matched.