USC Neurologist lobbies Congress on behalf of patients, researchers
Leslie Weiner, professor and Richard Angus Grant, Sr. Chair of Neurology, has never fancied himself a professional lobbyist. But when the National Multiple Sclerosis Society and the American Academy of Neurology (AAN) called to ask him to travel to Washington, D.C., to talk with members of Congress about some of the issues nearest and dearest to his heart, “I simply couldn’t refuse,” he said.
And so Weiner, along with 40 other prominent neurologists from around the country and an equal number of patients with multiple sclerosis (MS), found himself in the capitol building, trying to explain to its inhabitants the importance of passing a patients’ bill of rights, of legislating Medicare prescription drug coverage and of upping the National Institutes of Health’s research budget.
It was, he said, “an interesting experience.” He was teamed with one other physician and two MS patients, and after a day-long forum on “issues in empowerment,” he spent the rest of his time in the nation’s capital speaking with the legislative aides of four Republican members of Congress from California–and in one case, with the Congressman himself. The set-up, he noted was truly unique. “Patients meet all the time with Congress,” he noted, “but never with organized neurology.”
Their goal was to get the members of Congress to support a comprehensive bill of patient protections. The bill would ensure that patients with chronic, debilitating illness have access to specialists and to an external and impartial treatment review process; are provided with any medical advice, drugs or therapy they need (including experimental treatments); and can get both continuity of care and emergency care, when necessary, without prior authorization.
The teams also urged the adoption of a Medicare prescription drug coverage bill. “Outpatient prescription drugs are essential components of treatment plans for many Medicare beneficiaries with neurological conditions, especially MS,” the National MS Society and the AAN wrote in their position statement on the subject. “Twenty-five percent of all individuals with MS are covered by Medicare. In the United States, the Food and Drug Administration has approved three drug options to treat MS that can alter the course of the disease and slow the onset and progression of disability. Each drug annually costs $’0,000 to $’”,000, and none is covered by Medicare.”
“The prescription thing is choking the population as our patients age,” added Weiner.
Finally, the groups noted that the NIH spends nearly $100 million a year on MS-related research. “We encourage Congress to focus on NIH as a whole and on agencies of particular relevance to our concern,” the groups stated, “knowing that a well-funded federal research enterprise will benefit all of us.”
To that end, they said, Congress should continue the trend it set in the last two budgets, and increase funding for NIH research in fiscal year 2001 by yet another 15 percent. This “would bring us another step closer to doubling the NIH budget over the five-year period 1999-2000, ” they stated. In addition, they said, Congress should fully fund the proposed National Neuroscience Center at NIH, a $72 million project that would come out of the agency’s Building and Facilities budget, and hence not affect research funding at all.
Weiner had no trouble lending his support. “The NIH is going to save us,” he said, simply.
But if Weiner was impressed with the scale of the issues being addressed and with the seriousness with which the Congressional aides listened to positions, he was truly floored by the patients with whom he was paired. “They were great,” he said. “They came in wheelchairs, with walkers, with canes. And they knew the issues, better than I did in most cases. I asked one of the women I was with, How do you know all this stuff?’ And she said, simply,”I live with it.”
Weiner is not ready to give up his day job for a professional lobbying career, but says the trip really opened his eyes. “These issues don’t just affect patients with MS,” he said.
“Medical professionals at academic centers need to be involved–not necessarily in terms of sending lobbyists, but as a grass-roots movement. After all, these are the issues that are going to affect all of us, at some time or another”.