Capitol hill report: advocate for neurology from your home state!
July 8, 2024
Advocate for Neurology from Your Home State!
Issue in Focus
By Kara Stavros, MD, FAAN
Last summer, I joined my colleagues Dr. Princess Ikemenogo and Dr. Christoph Stretz to travel to Warwick, RI, to meet face to face with Representative Seth Magaziner at his local office during the August recess from Congress. This visit was part of the AAN’s Neurology off the Hill, a program that supports and encourages advocacy engagement with members of Congress in their home districts. Neurology off the Hill is a valuable opportunity to create greater awareness of issues affecting neurologists and patients living with neurological conditions while helping advocates foster relationships with members of Congress and their staff. This contrasts with the AAN’s Neurology on the Hill, a yearly event in which neurologists from nearly every state convene in Washington, DC, to receive issue training, prepare for legislative visits, and meet with legislators on Capitol Hill.
Prior to our Neurology off the Hill visit, we reached out to AAN advocacy staff to indicate our interest in participating. With their guidance, we were able to liaise with Rep. Magaziner’s RI office and schedule a meeting. Drs. Ikemenogo, Stretz, and I prepared for the meeting by reviewing preparatory materials provided by AAN staff to help us navigate the important points we wanted to make during the meeting as well as the logistics of a legislative visit. They were available to answer any questions along the way.
On the afternoon of our visit, we sat down with Rep. Magaziner and his staff to discuss two key issues: Step therapy reform and Medicare reimbursement. An advantage of a Neurology off the Hill visit is that the atmosphere is often less hurried than in DC, and there is more flexibility to explore our concerns and share stories about how these issues directly impact patients. We described our firsthand experiences of how patients and providers in RI are affected by these issues. We also brought relevant legislation to the attention of Rep. Magaziner and his staff, asking for their support and feedback.
Neurology off the Hill has the additional advantage of conveniently taking place right in our home district when Rep. Magaziner was back in RI, involving less travel and less time away from work for those of us seeking to participate. These visits also allow advocates to build stronger connections with the staff in local congressional offices and identify themselves as a local resource in health care. For both experienced advocates and those who are new to advocacy, Neurology off the Hill offers the experience of developing advocacy skills and growing your knowledge and expertise on topical issues, including step therapy and Medicare reimbursement. It is an important opportunity to further engage in AAN advocacy and to continue to use your voice to help create impactful change.
This year, take the opportunity to meet with your members of Congress during the August congressional recess to advocate for the need to reform step therapy and prior authorization, and to reauthorize and improve the Conrad 30 program. Use the AAN Action Center to send a meeting request to your representative. AAN advocacy staff will follow up once you have booked your visit to ensure you have all the materials needed to successfully advocate for these priority issues.
Latest Advocacy News
AAN Supports California Neurorights Bill
The AAN submitted a letter late last month to the Chair of the California State Assembly’s Committee on Privacy and Consumer Protections in support of SB 1223, which addresses consumer privacy related to neural data—a concept also known as neurorights. This bill aims to amend the California Consumer Privacy Act to classify neural data as sensitive information, emphasizing individuals' rights to own their neural data amid the rise of brain-computer interfaces and wearable technology. Similar legislation was signed into law in Colorado earlier this year, aligning closely with the AAN’s commitment to protecting patient data privacy. The AAN is actively monitoring SB 1223 and is prepared to act as needed.
FDA Approves Donanemab
Early this month, the Food and Drug Administration approved donanemab for the treatment of adults with early symptomatic Alzheimer's disease. A 12-month course of the drug is expected to cost $32,000 at launch. The AAN is committed to working with regulators to develop appropriate coverage policies to promote patient access to FDA-approved therapies.
AAN Supports Cannabis Rescheduling Proposal
The AAN submitted comments this month in response to the proposed rescheduling of cannabis from Schedule I to Schedule III. Consistent with the AAN’s position statement on the use of medical cannabis for neurological disorders, its comments are supportive of rescheduling to Schedule II to allow for greater research into potential neurological therapies.
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