Washington From the Inside: The Political Climate and Multiple Sclerosis

Lisa Emrich

Writer, HealthCentral.com and Brass and Ivory: Life with MS and RA

And we’re off to a great start!!  Welcome to the 21st Annual National MS Society Public Policy Conference in Washington, D.C. Yesterday afternoon began as Albert Eisele, founding editor of The Hill and former press secretary to Vice President Walter Mondale, and Jonathan Capehart, opinion writer for the Washington Post and frequent guest on MSNBC, shared insider perspectives on the political climate in D.C. this election year. Then we were brought up to speed on the status of important Federal issues and Society successes from the past year.

In one word, the political climate in Washington is bitter. Albert Eisele “can’t remember a time as toxic” as recent years in his time covering D.C. politics since 1964. It’s “so bitter that many senior leaders of congress have decided to call it quits.” Ten Senators with combined 186 years of service have chosen not to rerun, while 22 Representatives have also chosen to retire. The average age of those retiring is a young 61 years of age. “There is no practical incentive to work across party lines,” says Eisele and, “you can forget a 3rd party – it ain’t gonna happen.” Eisele closed his humorous talk – truly, he had the room roaring with laughter - with, “We live in an age of uncertainty. Nobody can really tell us what’s going to happen. There are always unexpected events which will change the course of history.”

Jonathan Capehart also talked about the political climate and the polarization of political parties. Although Capehart recognizes that this is a difficult time to be an activist, he emphasizes that 30 senators and majority quarter of the House are members of the MS Caucus. “They are natural allies, people who know you, know what your goals and objectives are. [When you] go to the Hill on Wednesday, look at that as your opening statement. Think of this as the beginning and keep the conversation going!” concludes Capehart. As MS activists, we need to take this message to heart. Pushing forward policies which will benefit people living with MS is a continuing job. We must not retire.

SUCCESS!!

Social Security Compassionate Allowance Listing

On October 13, 2011, the Social Security Administration (SSA) added Malignant Multiple Sclerosis to the Compassionate Allowances Listing, which helps the Administration quickly identify and target the most disabled individuals for priority approval of Social Security Disability Insurance (SSDI) benefits. According to SSA, Malignant MS is an aggressive and rare form of MS characterized by “rapidly progressive inflammation and destruction of myelin (protective covering surrounding the nerves) and increased formation of lesions and plaque in the brain and spine.” Alternative names include Marburg Variant MS, Fulminant MS, Aggressive MS and Advanced MS.

Yvonne Brown, MS Activist, testified in support of the Social Security CompassionateAllowance Listing in March 2011. Read more on the I’m an MS Activist blog. The National MS Society worked closely with SSA to expand the definition of “malignant MS” to include aggressive and advanced forms of the disease.

2011 Federal Issue Updates

Society public policy staff members provided an update on federal issues discussed at last year’s conference. The evening was complete as eight inspiring MS activists were inducted into the 2011 Advocacy Hall of Fame during the welcome reception led by Executive Vice President David Chatel and We Are Activist co-chair Robin D’Andrea.

Medicare Improvement Standard

In January 2011, the National MS Society joined four health advocacy organizations and a number of patients as plaintiffs in a class-action lawsuit that seeks to ensure that patients are not denied physical, speech, or occupational therapy based on the grounds that the individual’s condition is stable, chronic, or not improving, or that the necessary services are for “maintenance only.” In October 2011, a U.S. district court judge in Vermont (where the lawsuit was filed) has denied the federal government's motion to dismiss the nationwide class-action lawsuit. The “improvement standard” is inappropriately used to deny medically necessary rehabilitation services which help prevent physical and cognitive deterioration or maintain optimal functioning, even if improvement is not expected for an individual.

Improving Access to Neurological Care

In March 2011, a bipartisan bill was introduced to add neurology to the list of physicians eligible for the Primary Care Incentive Program. Under this program, the government provides a 10 percent bonus payment to primary care Medicare physicians who specialize in family medicine, internal medicine, geriatric medicine, and pediatric medicine. Including neurologists in this program will help to improve access to neurological care for Medicare patients living with MS and may encourage more doctors to choose neurology as a specialty. (Bill referred to Senate Finance Committee.)

Adult Day Achievement Center Enhancement Act (2011)

This legislation is designed to expand and enhance existing Adult Day programs that provide care and support for individuals with neurological diseases or conditions, such as multiple sclerosis, Parkinson’s disease, or traumatic brain injury. It will establish a competitive grant program to fund Adult Day programs which support the needs of a younger adult population and veterans living with neurological conditions, reduce the strain on family caregivers, and help to maintain or improve functional abilities or to prevent the onset of complications associated with severe forms of the disease or condition. (Bill referred to House Energy and Commerce, Subcommittee on Health.)

National Neurological Diseases Surveillance System Act (2011)

This legislation will establish a national data surveillance system that will track and collect data on the epidemiology, incidence, prevalence, and other factors of neurological diseases, including MS. Familiar with the out-dated estimate of 400,000 Americans living with MS? We would finally get a more accurate estimate of the incidence of MS in the US. Information regarding the natural history, prevention, detection, management, and treatment of the disease, including outcome measures, would be collected and stored by the Centers for Disease Control and Prevention (CDC). Information existing in various smaller databases and registries may be combined into one larger national database with stringent privacy and security protections. (Bill referred to Senate Health, Education, Labor, and Pensions Committee.)


Lisa Emrich, a musician living with MS and rheumatoid arthritis, is the founder and editor of the Carnival of MS Bloggers. You can connect with Lisa via her blogs and on Twitter.