Until a cure is found, the Gateway Area Chapter and MS activists are currently pursuing:
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Improved community resources
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Disability rights
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Long-term care resources
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Access to quality health care services
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Increased funding for MS research
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Accessible, affordable health insurance
FEDERAL Issues
In Washington, DC, we are working toward positive legislative change. Read about our priority MS issues.
View our our current action items and sign up for action alerts.
Read the National Health Care Reform Principles. These principles help guide our role in the national health care reform debate and determine the Society’s policy priorities.
State and Local Issues
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Locally, volunteers and staff are working on the following initiatives in Missouri:
- Awareness - Increase awareness of MS among members of the General Assembly - their understanding of the disease, their compassion for people with the disease, and their comprehension of the public policy implications of MS.
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Health Care - Advocate for access to quality health care for people with MS, whether they have private insurance, rely on public insurance, or are uninsured. Our specific areas of interest include:
- Ensuring that Missouri's revised Medicaid program takes into account the needs of people with chronic, disabling conditions such as MS
- Access to all of the MS disease-modifying drugs
- Access to physical and occupational therapies
- Access to specialists for people with chronic conditions, such as neurologists for people with MS
- Realistic copayments that are not a barrier to obtaining health care
- Housing- Expand initiatives to assist low to moderate-income people with MS remain in the least restrictive environment. Various mechanisms to do this may include, but is not limited to, expanding availability of targeted tax credits, home care initiatives, and caregiver support programs.
- Long-Term Care - Advocate for long-term care planning options relevant for people with MS. This includes exploring possible public-private partnerships or Medicaid buy-in opportunities.
- Transportation - Identify ways to improve accessible transportation.
- Privacy - Preserve the privacy of people with MS, by reviewing proposed changes in format and availability of medical records to make sure they are consistent with HIPPA and allow the patient to remain in control of who may access his/her private health information.
In ILLINOIS, volunteers and staff are working on the following initiatives:
- Senate Bill 3309. Thanks to MS activists’ advocating, SB 3309 was signed into law on July 20, 2010. This law will strengthen penalties to property owners who obstruct access to parking for people with MS and persons with disabilities becomes a problem especially at the conclusion of severe weather, such as snow. To read more about it, click here.
- Illinois lotto. In 2008, the $2 Illinois scratch-off lotto ticket “It’s Double Time!” raised $1,000,000 for MS research in the state of Illinois. Illinois is the first state to offer an MS lottery ticket, and the current “Dash! For Cash” MS lotto ticket has also been successful in raising $1,900,000!
- In-district visits. Volunteers will visit legislators in August while Congress is in recess. MS activists from the Gateway Area and Greater Illinois chapters will make visits with representatives to discuss the National MS Society’s federal issues and ask for their support.
- Advocacy and Government Relations Committee. The Gateway Area Chapter is recruiting members for the Illinois Advocacy and Government Relations Committee. This committee is open to those who live in Illinois and are interested in advocating for people living with MS in Illinois. The committee meets quarterly via teleconference and offers multiple ways to volunteer. Please contact the Chapter if you are interested in participating.
Expansion of the Home Services Program
- Supporting efforts to expand access to home services available to people living with MS through the Division of Rehabilitation Services (DoRS).
- Exempting assets from retirement accounts and life insurance policies when determining eligibility, and reconsidering the age limit of 60 will mean that more individuals with MS will qualify for the program and can receive essential home services. These services give individuals with MS the option of staying in their homes with their families.
- MS is a very expensive disease (approximately $69,000 per year) - one that strains a family's income. By expanding access to the Home Services Program, you can help keeps families from financial crisis.
- Expanding the Home Care Services program would be a cost savings to the government, as home care services cost less than nursing home care.
In MISSOURI, volunteers and staff are working on the following initiatives:
MS specialty license plate: Sen. Schmitt and Rep. Jay Wasson introduced legislation—SB 812 and HB 1637—in 2010 that would create an MS Awareness license plate in the state of Missouri! The National MS Society is continuing to work on the license plate outside of session. If you are interested in obtaining an MS plate, please click here or contact Sarah Gentry at sarah.gentry@nmss.org.
Capitol building accessibility: Every year, MS activists visit their legislators at the capitol. However, some offices are inaccessible to people with mobility impairments. This is why the National MS Society worked with a sponsor in the state senate to introduce legislation that would indicate which offices in the building are accessible on the Web and in print materials. Secondly, the bill would create a set of designated offices within the capitol building that legislators can reserve when meeting constituents with mobility impairments. Every citizen should have access to his or her legislators, and this bill will help ensure that this notion holds true within the Missouri state capitol building. Also of note: this bill would have provided access with no added cost to the state. While the bill did not become law in 2010, MS Activists will be bringing this issue to the capitol again in 2011!
Bike safety: Rep. Sater introduced HB 1250, a bicycle safety bill. This bill specified that when a vehicle passes a cyclist, it must do so at a distance of at least three feet—essentially, an arm’s length. With approximately 8,000 riders participating in 2009 Bike MS events in the state of Missouri, the National MS Society applauded this effort as a way to support and keep safe those who do so much for the cause. While some Bike MS participants ride for the pure enjoyment of the sport, each one rides for those who cannot.
Home Accessibility: The Residential Dwelling Accessibility Tax Credit is an annual
$100,000 appropriation that allows people to stay in their homes. In the current fiscal
climate, tax credits are an attractive choice for shoring up the state’s funds. The National MS Society and its activists successfully advocated in coalition with other organizations to keep this tax credit from the chopping block.
For more information on this credit, including requirements and eligibility, please contact the Public Policy Manager, Sarah Gentry at sarah.gentry@nmss.org.
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