Tuesday, March 17, 2009

Public Policy Conference Sets Issue Priorities

The National MS Society’s annual Public Policy Conference kicked off on a high note with major changes made to stem cell research funding. On March 9, President Obama signed an executive order to repeal the former administration’s policy that limited federal tax dollars for embryonic stem cell research. Click here to read the Society’s statement.

On March 11, hundreds of multiple sclerosis activists from across the nation joined together and met with their legislators on Capitol Hill. The conference was a great success and demonstrates how activists' collective efforts help shape policies and improve the lives of people living with MS.

This year, MS activists promoted three key issues of importance to the MS community: MS research funding in the CDMRP; MS & Parkinson’s Disease Registry; and, comprehensive health care reform.

Read more on these three issues below:

Increase MS research funding in the Congressionally Directed Medical Research Programs (CDMRP)

More than 400,000 people in the U.S. live with MS but recently federal funding for research has gone down. Emerging evidence indicates a potential link between combat service and an increased incidence of MS. In FY 2009, Congress provided $5 million for an MS Research Program in the CDMRP.

While this seed money is a great start, the overwhelming number of recent grant submissions demonstrates a clear need for additional research funding. Ask your members of Congress to sign onto a letter being circulated by Congressman Russ Carnahan (MO) and Michael Burgess, M.D. (TX) and Senators Sherrod Brown (OH) and Jim Bunning (KY) asking for $15 million for MS research in the CDMRP.

Click here to read the CDMRP position paper.

Support the National MS and Parkinson's Disease Registries Act (H.R. 1362)

Accurate knowledge and information about incidence and prevalence is critical to gain a better understanding of MS and Parkinson's disease. These registries could help uncover and inform promising areas of research such as genetic and environmental risk factors and support the discovery of new disease therapies. Ask your members of Congress to support the National MS and Parkinson's Disease Registries Act (H.R. 1362), which would establish separate MS and Parkinson's disease registries at the Centers for Disease Control and Prevention (CDC).

Click here to read the registry position paper.

Support Comprehensive Health Care Reform

Too many people with MS do not have access to care, and too many people with MS cannot afford their medications or other treatments. Urge your members of Congress to support comprehensive health care reform in the 111th Congress, and ask them to ensure this reform meets the needs of people with chronic conditions and disabilities.

The National MS Society's Health Care Reform Principles call for the elimination of Medicare's 24 month disability waiting period, long term care support and services, the elimination of provisions that discriminate against pre-existing conditions, among many others. Comprehensive health care reform is a necessary component and an important step to helping store our nation's economy.

Click here to read the health care reform position paper.

Talk to your legislators about theses issues. Call the Capitol switchboard at 1-800-828-0498 to be connected.

1 comment:

Maureen said...

In coming weeks, the Senate will finalize legislation to reform America's health care system. Long-term services and supports are essential to individuals with disabilities and seniors and must be included.
Proposals exist to help address these issues. However, they will only be included within health care reform legislation if Congress hears from you.
Please join thousands of others across the country in calling your Senators to tell them how important it is to include long-term services and supports. Your calls can make a difference!

Call-In Information:
When: Wednesday, May 13 (Between 8AM and 6PM EDT)
Call-In Number: 1-866-459-9232 (Toll Free)

You will be asked which state you are calling from and will be connected to your Senators’ offices. Below is a sample script to leave a message.

Hello (state your name and where you are calling from). I’m calling to ask the Senator to help make sure long-term services and supports are part of health care reform. Long-term services and supports are essential to the health, well-being, and community participation of individuals with disabilities and seniors. Please ensure long-term services and supports are included in legislation to reform health care. Thank you.


While over 48 million Americans do not have medical insurance, over 250 million Americans lack any insurance protection for the costs of long-term services.
Nearly half of all funding for long-term services is provided through Medicaid that requires individuals to impoverish themselves to receive supports.
There is an institutional bias within Medicaid that denies Americans with disabilities an equal choice for home and community services. Hundreds of thousands of individuals with disabilities and their families are on waiting lists for Medicaid home and community-based services.

Please pass on!