Family Caregivers, MS Research and MS Champions

Lisa Emrich

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

Welcome back to the 2012 Public Policy Conference. After breakout sessions this morning, the Society presented awards to three outstanding elected officials whose work benefits people with MS. Then MS activists gathered to learn more about one of this year’s public policy priorities, the Lifespan Respite Care Program. During lunch, University of Virginia professor Larry J. Sabato, Ph.D., who has an uncanny knack for predicting election outcomes, shared his political insights on this Super Tuesday. “No matter who’s elected, there will be less government,” says Dr. Sabato.

National Multiple Sclerosis Society Elected Officials Awards (2011)

Each year, the National MS Society recognizes the elected officials who work to improve the lives of people affected by multiple sclerosis and continue to support the Society and its policy priorities. For their tireless work throughout 2011, Representative Barbara Lee (CA-9) is honored as Representative of the Year, Senator Mike Johanns (NE) is honored as Senator of the Year, and Governor Mark Dayton (MN) is honored as Governor of the Year.

Representative Barbara Lee (CA-9), an instrumental member of the U.S. House of Representatives Multiple Sclerosis Caucus (MS Caucus), authored the first-ever annual Congressional Resolution honoring MS Awareness Week. She supported specific healthcare reform principles, necessary to address health disparities, that were included in the Patient Protection and Affordable Care Act. Representative Lee authored the Adult Day Achievement Center Enhancement Act (H.R. 883) and has been a vocal supporter of increased MS research at the National Institutes of Health (NIH) and through the Congressionally Directed Medical Research Program (CDMRP). Having a personal connection to MS, Representative Lee spoke on the Congressional floor to raise awareness of the issues facing African Americans living with MS. Ask your Member of Congress to contact Representative Lee to voice your support for her resolution honoring MS Awareness Week (March 12-18, 2012).

Senator Mike Johanns (NE), a strong ally and supporter of advancing MS research, co-led a Dear Colleague letter with Senator Whitehouse (RI) calling for continued funding for MS research in the Congressionally Directed Medical Research Programs (CDMRP) in FY 2012. Due to his support, along with others, $3.8 million for MS research was provided for in the CDMRP last year. Senator Johanns co-sponsored the National MS and Parkinson’s Disease Registry Act, now titled the National Neurological Diseases Surveillance System Act (S. 425), which will establish a national system to track and collect data on the epidemiology, incidence, prevalence and other factors of neurological diseases, including MS. Senator Johanns has been in public service for 28 years, having served as Nebraska’s 38th governor from 1999 to 2005. As he spoke to the MS Activists he told of his mother’s struggle with Parkinson’s disease and his former sister-in-law’s life with MS.

Governor Mark Dayton became Minnesota’s 40th Governor in January 2011 after serving as U.S. Senator. He has consistently maintained access to affordable, quality health care as a top public policy priority. Upon taking office, Governor Dayton fast-tracked Minnesota’s early opt-in for Medicaid expansion as part of the Patient Protection and Affordable Care Act (PPACA) helping to expand access to care and healthcare coverage to roughly 95,000 Minnesotans. He has also authorized work on a state health insurance exchange as prescribed in the PPACA. Governor Dayton has fought proposed legislation that could have resulted in the virtual shutdown of critical medical research at the University of Minnesota and the Mayo Clinic. Governor Dayton has been in public service for 34 years and currently serves on the Executive Committee of the National Governor’s Association.

The Lifespan Respite Care Program (LRCP)

Family members often become caregivers to loved ones living with chronic and progressive conditions. According to the National MS Society, up to 25% of people living with MS will require long-term care services. According to a 2011 AARP report, 61.6 million family caregivers provided care at some point during 2009 and the value of their uncompensated services was approximately $450B a year. Respite care, a frequently requested support service, provides short-term professional help widely needed to give caregivers the relief necessary to maintain their own health and promote family stability.

According to a 2011 National Alliance for Caregiving (NAC) survey, family caregivers spend 24 hours per week on average providing care to people living with MS. Additional survey results reveal that 64% of caregivers were emotionally drained, 32% suffered from depression, 25% could not focus at work and 22% have lost a job due to caregiving responsibilities. Sixty-six percent of respondents said respite care would allow their care recipient (often a loved one) to live at home longer.

The Lifespan Respite Care Program (LRCP) is intended to expand and enhance services for family caregivers in statewide respite programs, improve coordination of services between available programs, improve access to caregivers by streamlining the delivery of planned and emergency respite services and improve the overall quality of respite services currently available. Thirty states have received grants and implemented LRCP programs which serve families regardless of special need or patient age. Currently more than half of care recipients (56%) are under age 75, and almost one-third (28%) are under age 50. The need for respite care does not discriminate by patient age.

LRCP has been severely underfunded. It was authorized by Congress in 2006 to receive $290 million over five years, but the Program has only received $2.5 million in each of the past three years. MS Activists and the National MS Society will urge Congress to provide $5 million for the Program in the Fiscal Year 2013 Labor-HHS-Education appropriations bill and to reauthorize the program by passing H.R. 3266.

Kim Campbell, MS activist from Texas, gave moving testimony to the need for respite care, her story garnering the first standing-ovation of the conference. Kim has lived with progressive relapsing MS for over twenty years. She and her husband Gary have used their voices to testify before both the Texas House and Senate in support of family caregivers through respite care. In February 2011, Kim provided testimony during a Senate budget hearing in support of Home and Community Based services, highlighting the important role family caregivers have in allowing persons with a chronic illness to remain in their home.

More to Come:

This afternoon we will learn more about the 2nd policy issue being brought to Capitol Hill: Increased Funding for MS Research. Todd Adams, Legislative Assistant to U.S. Representative James R. Langevin (RI-2), will be honored as 2011 Congressional Staff Person of the Year. He will also help us prepare for our important visits on the Hill tomorrow. Then, this evening, I’m looking forward to kicking back and enjoying the comedy of Brett Leake, a standup comic turned sit-down comic who lives with muscular dystrophy.

Continue your involvement in activism by following the public policy office on Twitter at @MSActivist.

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.