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Advocacy Results


Support for Family Caregivers in Virginia

Each year, MS activists urge Congress to continue funding the Lifespan Respite Care Program. Since 2009, thirty states and the District of Columbia have received grants to establish or enhance programs that better coordinate and deliver quality respite services to our nation’s more than 60 million family caregivers. State grantees have made great strides, with some running awareness campaigns and others establishing statewide databases of available respite care. Some states—like Virginia—have started providing vouchers to families to choose and purchase quality respite care.  
Ray Heron’s wife Pam has MS and has needed round-the-clock care since the late 1990s. During weekdays, Ray spends about three hours each morning and four hours each evening caring for Pam. While he is at work, Medicaid fortunately covers a certified nurse assistant to feed Pam breakfast, lunch and dinner, and manage her other needs including positioning to avoid pressure sores. 
Ray and Pam were excited when, through his volunteerism with the Society, Ray heard about Virginia’s Lifespan Respite Voucher Program. Ray called the agency that provides Pam’s care and discovered that the vouchers would fill the gaps in Pam’s Medicaid-paid care for up to three days. Ray and Pam applied and were approved for a voucher, which enabled Pam to have the support she needs and Ray to visit his parents—a six-hour drive away—who he hadn’t been able to see in years. 
Ray is proud to call himself a family caregiver and happily points out a priceless benefit: “I still get to spend every day with Pam.”

When MS Activists work together, we get results.

Success happens when people with MS and those connected to the cause speak out on issues important to them, ask for change, and work with public officials to address them in a positive way.

Thanks to MS Activists, we have successfully...

  • 2014: Partnered with the Montana Commissioner of Securities and Insurance to ensure access to MS drugs by addressing high out-of-pocket costs.
  • 2014: Protected disabled parking for people with MS in Washington State by focusing on enforcement rather than limiting parking privileges for legitimate users.
  • 2013: Prevented Washington insurance companies from dropping MS drugs from their formularies.
  • 2012: Avoided budget cuts that would have eliminated health care for hundreds of people living with MS in Washington.
  • 2012: In Alaska, passed HB 218, which allows more consistency in pricing for prescription medications.
  • 2012: Pushed regulations that ensured insurance plans would cover MS drugs.
  • 2011: Passed legislation in Washington that makes it easier for physicians who specialize in MS care to get their full medical license.
  • 2010: Passed legislation that lowers the cost of expensive durable medical equipment in Washington.

Expect to hear more success stories as we move closer to a world free of MS!


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