MEMBERSHIP AAN Advocacy Expresses Needs of Neurology to Lawmakers and Regulators

continued from page 15 from the standpoint of reimbursement. That was, of course due to the fact that neurologists acted as primary care doctors to many of our chronically ill neurology patients who looked to us for practically all of their systems care. Interestingly enough, this topic is probably just as relevant today as it was when it was first presented.”

To help address the increasing needs of members, the Legislative Affairs Committee (LAC) was started in 1986, followed by the State Affairs Committee in 2002. In the 1980s, the Academy was represented by Medical Advocacy Services, a for-profit subsidiary of the American Society of Internal Medicine, which focused largely on Medicare fee schedule issues.

In 1992, the AAN engaged the Washington, DC, firm of Powers, Pyles, Sutter & Verville (PPSV) to furnish legislative and regulatory services on federal matters affecting the AAN. PPSV helped the Academy with legislation including health care reform, Medicare payments, and NIH funding, as well as regulations such as those affecting physician payment, physician referrals, coverage of neurology-specific drugs by Medicare, and physician supervision of diagnostic tests. They also helped arrange meetings with Congress and members of the executive branch, testimony before Congress, and participation by AAN members on federal committees such as the Physician Payment Review Committee. When the Academy opened its Washington office in 2005, PPSV stepped back to a supporting role in legislative, regulatory, and coalition activities.

In 2007, the Academy launched neurology’s political action committee, BrainPAC, which raises donations from US members to support candidates for federal office who support the neurology profession and patients. “I think the BrainPAC is a good thing,” said Thomas R. Swift, MD, FAAN, who was president at the time, “simply because everything is a PAC now. If you want to gain access, and you want to support candidates that look at your position, it’s inevitable you have to—that’s how our system works.” His successor, Stephen M. Sergay, MB BCh, FAAN, agreed. “There were pros and cons, and then the vote was taken, I think at one of the very first meetings of Tom Swift’s presidency, if I remember correctly. All of us had some ambivalence because of the fact that we needed to support people whose policies we might not have believed in beyond what they were doing for medicine. We realized that was the game, and it needed to be done.” To date, BrainPAC has raised over $4 million to provide bipartisan support to elect or reelect members of Congress who are sympathetic to the needs of the neurology profession and patients and caregivers dealing with brain disease.

Championing the Care of American Veterans

At least 10 AAN presidents saw active duty during World War II. Other leaders served in Korea, Vietnam, or elsewhere during the Cold War. Since the time of the Academy’s founding, their personal service has reinforced the AAN ’s commitment to quality veteran care.

John Booss, MD, FAAN, who was a major at the US Air Force School of Aerospace Medicine in San Antonio from 1971 to 1973, was appointed as the National Program Director for Neurology in the VA in 1993. This was due to the LAC’s successful lobbying to hire a neurologist to replace the acting director, whose primary responsibility was mental health.

“Clearly, the VA had not been paying as much attention to disorders of the nervous system as would have been needed,” said Booss. “There were about 90 hospitals in the system with at least some neurologic staff, with over 400 neurology staff nationally, considering both part-time and full-time neurologists. Further, the VA supported 23 percent of neurology residency positions nationwide, almost a quarter of the national total. One of my major tasks was to try to elevate the status of VA neurology nationally, and the AAN was crucial. Dr. Steve Ringel, then the chair of the LAC, was kind enough to appoint me as an ex officio member of the LAC. As a government employee, I was precluded from lobbying efforts, but I was permitted to inform interested groups as requested. Over the years, the LAC served as a sounding board for many VA neurology issues.” physicians are not highly regarded by health policy wonks or legislators. I learned how Congress works and legislation is passed. I even wrote a bill called the Clinical Research Enhancement Act that was eventually passed into legislation.”

Booss was able to participate in LAC advocacy efforts on the Hill after he retired from the VA in 2005. “Two gratifying efforts combined into one bill were the passing into law of permanent authorization for the VA’s MS Centers of Excellence and the VA’s Parkinson’s Disease Research, Education, and Clinical Centers, two systems of care that were developed in the VA during my tenure. That effort was a principal goal of the LAC and a coalition of the AAN, the Parkinson’s Action Network, the National Multiple Sclerosis Society, and the Paralyzed Veterans of America.” For his work on behalf of the Academy and neurology patients, Booss was named a co-recipient of the AAN ’s 2007 Advocate of the Year Award.

The Academy led a major effort to help veterans with epilepsy, including those with epilepsy following traumatic brain injuries received in Iraq or Afghanistan. With a push from the AAN, the Epilepsy Foundation, and several veterans’ service organizations, the VA Epilepsy Centers of Excellence were established by Congress in 2008, followed by Headache Centers of Excellence in 2018. We work with the Alliance for Headache Disorders Advocacy on the Headache Centers and lead a coalition with the four centers' patient groups to increase congressionally appropriated funding each year.

Yerby’s dedication to advocacy led to him chairing the LAC from 2001 to 2007. “I think the fact that the AAN realizes that federal and state health policy is important enough to pay attention to and the fact that the membership is now more engaged is a great success. The use of the Vocus online advocacy system that easily enables US members to contact Congress on key issues was very important. The establishment of a Legislative Affairs Committee was also important. The BrainPAC will allow even a small organization like ours to be better heard on Capitol Hill.”

Grassroots Advocacy Training Builds Army of Advocates

Fellowships Expand Members’ Knowledge, Abilities

The old bromide “learn one, do one, teach one,” could be applied to the Academy’s strategy to expand its base of advocates. Based on two successful congressional fellowships held by Drs. Ira Shoulson and Steven P. Ringel in the early 1990s, the AAN joined with the American Neurological Association and the Child Neurology Society to create a Neurology Public Policy Fellowship in Washington. Its first recipient, in 1995, was Mark S. Yerby, MD, MPH, FAAN, who had done a residency in public health and developed a long-standing interest in health policy following his wife’s death from cancer.

“Her insurance company refused to pay for her cancer treatment because it was deemed ‘experimental.’ We were able to pay for her care out of pocket, but it cost us $50,000 the first year alone. After she died, I felt I needed to put some of my energy into health care reform. I saw a notice about the Academy’s Public Policy Fellowship and thought that might be a good approach.”

Fellows spent up to a year working with legislators and staff; Yerby’s assignment was the office of Sen. Mark Hatfield (R-OR).

“I learned a great deal from my public policy fellowship. The situation is very complex. Funding of health care is patchwork and irregular. There are many forces involved, most of whom are more concerned with cost than quality or even any distribution of care. I learned that

Recognizing there is indeed strength in numbers, the Academy has often joined with other neurology and patient organizations in Capitol Hill activities. But it has also recognized the need to develop its own army of grassroots advocates. Neurology on the Hill was created in 2003 to bring interested members to Washington, DC, for two days to learn more about national health care policies and how they affect their profession. Participants then meet with their state delegations to press them for favorable consideration of the Academy’s legislative agenda. The event has been very popular with members: in 2017, 216 AAN member advocates made 272 congressional office visits and sent 2,072 tweets generating 1.8 million social media impressions. “Academy green” bow ties and scarves give members a distinctive look as they work their way through the offices of the Senate and House.

Members can gain formal advocacy training through the Donald M. Palatucci Advocacy Leadership Forum (PALF). Developed as an intensive three-day training program to enable US and international neurologists to work more strategically and effectively on local or regional issues, graduates have joined