The leading neurology societies advocate for neuroscience during a virtual Capitol Hill Days event
Last month, a group of American Neurological Association (ANA) and American Brain Coalition (ABC) members had the opportunity to virtually visit Washington, DC, for Capitol Hill Days meetings. Over the course of two days, members met with staffers from the offices of 16 senators and congressional representatives to advocate for the advancement of neurological research and access to treatments for neurology patients throughout the United States.
“All doctors are advocates—we advocate for our patients every time we see them and suggest a treatment or a drug. But neurologists and neuroscientists can be very effective advocates in a more formal venue,” said Barbara S. Giesser, MD, FAAN, FANA, who was among the ANA attendees.
By providing a human face to the neurology-related legislation currently making its way through Congress, attendees hoped to educate their representatives and encourage them to sponsor and support neurological research and innovation.
A Targeted Approach
One attendee, M. Elizabeth Ross, MD, PhD, FANA, saw the meetings as an opportunity to have meaningful conversations with legislators and work together in support of progress toward cures and treatments. “If we don’t try to inform and engage with our communities broadly, I think we’re missing out on a major responsibility in science and medicine,” Ross said.
This year’s Capitol Hill Days meetings focused on three topics:
1. Funding Vital Research Programs at the National Institutes of Health (NIH), National Science Foundation (NSF), and the Veterans Administration (VA)
Currently, the NIH, NSF, and VA are funded by continuing resolutions. These temporary funding measures, which the institutions cannot count on for long-term planning, then have a deleterious impact on research, said Ross. Continuing resolutions can result in delayed projects, paused work, and stunted funding, interrupting research and harming patients.
2. Establishing a Neuroscience Center of Excellence at the Food and Drug Administration (FDA)
A center for excellence would provide a means of being able to streamline solid and appropriate decision-making for drugs that are coming up for review, according to Ross. “This is something that was already piloted with success by the Oncology Center for Excellence, and a similar approach to brain disease would be a logical next step that would be extremely effective,” Ross said.
The Bringing Regulatory Advances into Neuroscience (BRAIN) Act of 2021, created to introduce a Neuroscience Center of Excellence, was introduced in the House in September by a bipartisan group, and ANA members encouraged senators they met with to introduce a Senate companion to the act.
3. Passing the Safe Step Act
Currently, step-therapy protocols require patients to follow an insurance-mandated treatment plan, and they must fail the steps of that plan before they can access any other treatments, regardless of their doctors’ recommendations. “You can have the most effective drugs in the world, but if people aren’t allowed to access them, it doesn’t do any good,” Giesser said. “If a doctor says, ‘This is the best choice,’ but the insurance company says no, then that denial or delay can lead to permanent disability for the patient.”
The Safe Step Act would require health plans to allow for exceptions to step-therapy protocols when an alternative treatment would be more effective or has already proven to be effective or a delay in effective treatment would harm the patient. It has been introduced in both the House and the Senate, with bipartisan support in both cases, and ANA members asked the offices they met with to ensure that the bill moves forward and, if they haven’t already done so, to cosponsor the bill.
At the Meetings
The meetings themselves were small virtual gatherings of, in most instances, a few congressional staffers and a few ANA and ABC members. “The sessions I participated in were enlightening two-way conversations,” Ross said. “Universal concerns regardless of the office were ‘How do we use our federal funds most efficiently?’ and ‘What are the programs that can be supported that will both benefit Americans and help to lower health care costs overall while improving lives?’”
Members felt that the congressional responses overall were very positive. “The staffers were very gracious and very engaged with us,” Giesser said. “Several of the offices contacted ANA and specifically asked for more information about the legislation we’re advocating for.” Representative Bacon and Senators Padilla and Van Holland were among those to have followed up to further the conversation.
When possible, participating members met with representatives from their own states, which was a bonus that allowed them the opportunity to get to know their legislators better.
David Standaert, MD, PhD, FAAN, FANA, was pleased to be able to meet with the offices of both of his Alabama state senators, Senators Shelby and Tuberville. “Senator Shelby has been a longtime supporter of the NIH and the NIH budget,” Standaert said. “His office was open to the idea that the budget should fully pass.”
Tuberville, on the other hand, has just begun his first term. “It was important to talk to his staffers about the brain and brain science and bring them up to speed on that,” said Standaert.
A leave-behind sheet was sent to all the offices that participated, providing both a recap and a future resource for the congresspeople. “A real benefit of these kinds of sessions is opening channels so when there are questions down the road, legislative panels have places to go to ask questions,” Ross said.
The Capitol Hill Days meetings are a starting point, not an ending point. “Following up with these offices is important. And part of it is monitoring these bills as they move through Congress,” Standaert said. Following the progress of the appropriations budget and the BRAIN and Safe Step acts can help guide the ANA and ABC in what further advocacy might be needed.
“I’d like to encourage other people to get involved in Hill Days through the ANA or the ABC,” Standaert said. “You get to connect with the offices of our representatives in Washington. They do listen, and I think that’s important to know. And you can send an email, make a phone call, or write a letter. You don’t have to be in a group.”
The important thing is to get involved. “Legislators need to hear from their constituents,” Giesser said. “We know that many of their constituents may be diagnosed with a neurologic disease. They may know that but may not know what neurologists do. So when we want to ask them to legislate for specific legislation that impacts neurology, we need to educate them on what it is that we do.”