National Conference 2008: Meeting the Scientific and Political Challenges of 2009
Shawn O’Neail of National MS Society Advocacy and Dr. Harold Pollack of the University of Chicago led packed workshops on the presidential election outcome and how we can move others to help create health-care reforms that benefit the MS community.
Dr. Pollack — who was part of the campaign of now President-Elect Obama — said the Society’s Health Care Reform Principles have already made an impact not only on the inner Obama circle but also as a rallying point for many other organizations and individuals impacted by chronic diseases and disability.
Move others! Everyone in the movement is urged to e-mail this document to state and federal legislators and to other organizations or groups with similar goals or concerns.
The most likely health policy changes anticipated in the first weeks of the new administration are:
- An executive order rescinding the Bush administration’s limits on stem cell lines available for research
- Expansion of SCHIP which offers health insurance to uninsured low-income children
Changes that are most likely to be up for discussion in the early months of 2009 include:
- A move to increase funding for the National Institutes of Health (NIH)
(MS research funds from the NIH dropped by $12 million during the last administration.
- Establishing a pathway for the approval of generic “follow on” biologicals
(This is the term for drugs that are produced by living cells. All the current MS drugs are in this category.)
- Improvements to Medicare Part D for prescription drugs
- Creation of a health-care reform plan
(Currently in development under the leadership of Sen. Ted Kennedy, this is likely to offer mixed options, encouraging competition among government administered plans and private and employer–based insurance plans.)
The Research Perspective — Imagination in Action
Dr. Stephen Hauser of the University California at San Francisco is doing ground breaking work on the genetics of MS.
“Can we make MS a simpler problem?” he asked. MS has both genetic and environmental causes, and while the genetic factors probably account for about a quarter of the picture, it’s a part that is actually easier to clarify. Relatively speaking.
Dr. Hauser illustrated the quest for individual genes with a series of images of an attractive couple on a picnic blanket, at distances of one meter, a thousand, a million, a billion. The final picture showed the solar system as one of a cluster of others in the Milky Way. Nevertheless, the tools of modern science allow scientists to zero in from there to a mere one thousand meters, and by sharing data and collaborating in broad coalitions, several of the 35 to 50 genes active in MS have now been identified. One of them makes MS more severe and is often found among African-Americans with MS. Another, if coupled with the first, prevents it from acting and is more often found in other populations.
Check this Web site often for breaking research news, including news of a huge next step: an international project, which has already begun, to screen the genes of 12,000 people with MS and another 12,000 without.
“We are within a year of getting to the next group of gene variants and learning how they work,” Dr. Hauser said. By 2013, he predicted, genetic information, combined with bioinformatics, could make individualized treatment plans feasible. “We’ll know when to treat a person with MS and with what,“ Dr. Hauser believes.
Bold Spirits All
Among a gathering of many bold souls who told the conference their personal stories was Jason DaSilva, a New Yorker diagnosed at 28 and plunged into a health-insurance world of unfair complexity. The video he made brings the need for health-care reform to vivid life. Unable to qualify for professional physical therapy, DaSilva is seen fighting his primary-progressive MS by paying fees to a personal trainer at a local gym.
Dr. Dora Hughes developed MS in medical school and went on to get not only her MD but a masters in public health — and a job as health policy advisor for a junior senator from Illinois just a few years ago. She continues in this role for President-Elect Obama, and promised the conference an administration that will not forget what people with MS go through. She urged the audience to move themselves and others on public policy issues, underscoring that collaboration is the key to pragmatic real-world solutions.
Teenager Jourdan Urbach, a prodigy in both music and science, who has been raising millions for health-care causes since founding Children Helping Children when he was just seven years old, urged the Society to tap the altruism and energy of young people. “They long for opportunities in community service and philanthropy,” said Urbach.
Thursday ended with a glorious Celebration Dinner highlighting achievements of outstanding volunteers in advocacy, fund raising, programs and ser vices, and professional activities nationwide. The evening concluded with a wild Colorado Dutch-Irish Yee Haw from Linda Storey of Colorado and her band, who joined forces with John O'Gods, an Irish band based in Amsterdam. Linda lives with MS and so does Mark Gilligan of John O'Gods.