ARTICLE IN BRIEF
AAN advocacy for policy priorities on Capitol Hill has led to some successes — increased NIH funding, for example — but challenges remain in advocating for transparency in drug pricing and the reduction of regulatory burdens.
Just a few weeks after more than 200 neurologists met with members of Congress and their staff on Capitol Hill as part of the annual AAN Neurology on the Hill (NOH) event, neurology had some notable “wins” to celebrate in March.
The FY 2018 Omnibus spending bill, signed by President Trump on March 23, will ensure government funding through September 2018, including, among other measures, increases in funding for the National Institutes of Health (NIH) by $3 billion, $149 million in new funding for the BRAIN Initiative, as well as a $414 million increase in research support for Alzheimer's disease, and $500 million for NIH research on opioid addiction and non-addictive pain therapies.
FAST ACT PASSED
In February, as part of an earlier continuing resolution to maintain government funding through March 23, Congress passed the FAST Act, a legislative priority for the AAN, the American Stroke Association, and other medical specialty societies for the past few years.
Previously, federal policy only allowed the Centers for Medicare and Medicaid Services (CMS) to reimburse for telestroke services in rural areas, said AAN Government Relations Committee Chair Nicholas Johnson, MD, FAAN, assistant professor of neurology, pediatrics, and pathology at the University of Utah. The passage of the FAST Act allows for CMS coverage for all telestroke services for patients in all geographic areas.
“In many urban settings, it's hard to access a neurologist in a timely manner,” Dr. Johnson said. The FAST Act gives patients even in urban settings the ability to have access to treatments, including tissue plasminogen activator (tPA), in a timely manner, he said, adding: “Early access to tPA improves long-term outcomes, and leads to shorter hospital stays and rehabilitation time.”
The final passage of the FAST Act took patience, said Heidi Schwarz, MD, FAAN, the chair of the AAN Practice Committee and a professor of clinical neurology at the University of Rochester Medical Center. The legislation was introduced in Congress 2015 and voted into law in 2018, which is a quick turnaround, Dr. Schwarz said. But, she emphasized, what really moved legislators were patient stories.
For legislators, it's the personal story, she said. “What turned the tide this year? We think that it helped having patients among us, some of whom were stroke survivors, participating in NOH in 2016. That and continued advocacy and the push to stress the importance of receiving timely care is what made a difference, she said.
The additional $3 billion in funding to the NIH brings total funding up 8.8 percent to over $37 billion. “It's nice to see continuation of the trend over the last five years that the NIH budget is increasing, even when accounting for inflation,” said Gil Wolfe, MD, FAAN, the Irvin and Rosemary Smith professor and chair in the department of neurology at the University at Buffalo Jacobs School of Medicine and Biomedical Sciences of the State University of New York, who was one of 211 members who participated in this year's NOH.
“We had not been in that type of funding pattern going back to the turn of the century. We're back on a better track basically and have caught up with pre-sequestration levels,” Dr. Wolfe said.
The additional funding for opioid addiction and mental health in the 2018 fiscal year, which includes the funding for NIH research, is a step in the right direction, NOH participants told Neurology Today. It will fund new grants, prevention programs, and law enforcement in communities most vulnerable to the crisis. But, some said, it's still not enough.
“Our ask is $1 billion a year for the next five years to actually fund research into the mechanism of pain and the alternative ways to help people in chronic pain, whether that means medications, procedures, cognitive behavioral therapy, or exercise,” Dr. Schwarz said.
This “ask” is centered on the Opioids and STOP Pain Initiative Act, which is intended to “expand, intensify, and coordinate fundamental, translational, and clinical research of the National Institutes of Health with respect to opioid abuse, the understanding of pain, and the discovery and development of safer and more effective treatments and preventative interventions for pain.”
Dr. Johnson believes the passage of this bill could potentially lead to research for new alternative therapies to opioids. “As neurologists, we see people who are in chronic pain every day,” Dr. Johnson said. For some of these people, opioids are the only sufficient treatment to medicate the pain they experience. The bill would help identify non-opioid pain alternatives, he said.
“It's hard to just say you shouldn't take opioids, even if you restrict opioid pill counts, the problem of chronic pain still exists,” he said.
In addition to opioid legislation, the AAN is focusing on transparency in drug pricing. It is why they are advocating for the passage of the Fair Accountability and Innovative Research (FAIR) Drug Pricing Act of 2017.
The FAIR Drug Pricing Act would require pharmaceutical companies who raise the price of their drugs by more than 10 percent a year to provide CMS a justification for that pricing.
This is especially critical as the cost of drugs continue to rise exponentially, said NOH participant Sarah Song, MD, MPH, assistant professor in the department of neurological sciences at Rush University Medical Center. “We want our patients to be able to have access to the drugs that they need at a price that they can afford,” Dr. Song said.
Medications for multiple sclerosis and motor neuron disease, for example, are often the most expensive she continued. “It is wonderful that there has been movement in finding more effective treatments, but if the people who need them the most, who would benefit from them, can't receive them or afford them, then it is useless,” she said.
The truth is that many patients are disproportionately affected by the high costs of drugs that are partially covered or uncovered due to high deductible policies or limited formularies of the insurer, Dr. Schwarz said. She added that she, like other neurologists, is hopeful this bill will pass, but she noted, “just the threat of these bills has made pharmaceutical companies stand up and take notice.”
Among the issues AAN members took to Congress at this year's NOH event were the regulatory burdens neurologists face, such as prior authorization requirements. Insurance companies use different rules for how they prioritize and authorize coverage for treatments, Dr. Johnson said. “The process is decidedly inefficient and uses antiquated technology. It delays patients' ability to receive drugs prescribed to their disease. This leads to the high rise of prescription abandonment, because it's such a hassle.”
The Standardizing Electronic Prior Authorization for Safe Prescribing Act of 2018 would tap into the infrastructure already built into many electronic medical record systems and encourage physicians to fill out electronic prior authorization for prescriptions they write.
“At the point of care, within 60 seconds of time, the prior authorization would be approved or denied,” Dr. Johnson explained. “Therefore, while the physician is sitting in the room with a patient, they would know if the drug is approved, and if any steps are needed. However, the issue physicians face is asking insurance companies to use this technology.”
There are many other legislative challenges that impact neurological care, both on the federal and state level. Regulatory burdens continue to increase for physicians and lead to physician burn-out; more money is needed for neurological research — an issue that will continue to exist as budget cuts are more frequent and less funding is provided for projects. Dr. Song added that the specialty will face the challenge of “a decline in talented young people going into neurology, and less trained neurologists to see an increasingly aging population.”
Dr. Wolfe said that is why it is so important to involve young people in AAN advocacy efforts. “Congressional offices like to see young people devoted and energetic about causes,” he said.
The presence of young neurologists, along with experienced neurologists, and having a wide representation at NOH can help cover many senate and representative offices.
“It's very important, because one of the first lessons you learn is legislators will primarily listen to the people that can vote for them,” he said.
Dr. Wolfe also added that preparing an organized and concise message, along with pushing for legislation where something has already been forwarded as an act and motion with bipartisan support, makes it more likely to pass.
Neurologists also recognize the power of telling patients' stories on the hill. “Legislators are looking at issues affecting their constituents from their perspective, but as neurologists, we can tell our truth and the way it affects us and our patients,” Dr. Song said. “It is very empowering to consider that we as neurologists can influence change just by showing up, talking about what we do, and pushing for what we believe in, for ourselves and for our patients.”
ADVOCACY AT HOME
Soon neurologists will be able to continue their advocacy efforts in their home states with the program “Neurology off the Hill.” This program, available to members who have participated in other advocacy programs like NOH, provides local opportunities to meet and develop ongoing relationships with their members of Congress. Continuing conversation between lawmakers and neurologists is the key to a trusted relationship that breeds mutual respect, Dr. Song said.
“The more often that we can call upon each other, the more likely that fair, balanced, and common-sense legislation, like the FAST Act, can happen,” she said.
Overall, many neurologists, like Dr. Schwarz, credit their visibility to the BrainPAC, the only federal action committee in Washington, DC, that represents those in the field of neurology. In this regard, BrainPAC is very active by opening its doors for neurologists to have a platform to convey their message on the Hill. “Since BrainPAC started, it has clearly changed the traction we have when we see our legislators.”