Federal Updates
MS Activist Blog
Check out the latest federal news and share your views! http://msactivist.blogspot.com
Action Alert Network
Are you registered as an MS activist? We need your voice. One link will sign you up to receive federal and state alerts to take action. Recruit a friend! http://www.nationalMSsociety.org/get-involved/take-action/index.aspx
State Updates
Massachusetts
Funding MS Home LINKS
State funding for the chapter’s care management program for FY’10 was reduced from $162,368 to $112,000 due to emergency 9c cuts. It was spared further cuts in November thanks to the commitment of the Department of Public Health to this critical program. The chapter will mobilize the Action Alert Network if further cuts are proposed.
Olmstead
The chapter joins the full disability community to advocate with administration officials for supports to ensure safe and independent living in the community. Staff participated in the recent Statewide Independent Living Conference and Olmstead Initiative hearings.
Medicaid “Marriage Penalty” Stories Sought
Are you married and been denied Mass health/Common Health because of income and are unable to meet the one-time spend down to qualify? If so, please contact Michelle Dickson at 1-800-344-4867.
Legislative Priorities
Chapter bills
- SB2009 is a resolution urging Congress and the President to eliminate the two-year wait for Medicare which is in process and will be sent to Congress to urge the inclusion in national health care reform.
- SB582 urges the administration to waive spousal income when determining Medicaid eligibility for severely disabled adults.
Other priorities
- SB812 making prescription drugs available during public disaster emergencies.
- SB1332 extending existing property tax credits to adults with disabilities to achieve parity with the elderly credits.
- SB1903 requires alternate handicap parking when construction/events make existing accessible parking unavailable.
- SB1988 requires improved sidewalk accessibility for disabled.
- HB1965 stipulates funds from local disability parking fines may be used to improve local ADA compliance.
- SB819/HB2137 requires accessible medical equipment, e.g. diagnostic tests, exam tables.
- HB45 extends jurisdiction of MA Architectural Access Board to be consistent with certain federal requirements.
New Hampshire
Funding Available for the Catastrophic Illness Fund Program (CIP)
The state’s next two-year budget includes continued funding for the CIP due in part to the joint efforts of the chapter and American Cancer Society. The fund provides financial assistance up to a maximum of $2,500 to qualified low-income residents who incur out of pocket medical expenses. The chapter is monitoring potential cuts to the program due to revenue shortfalls. To learn more about the program please contact 1-800-852-3345 ext 4495 or http://www.dhhs.nh.gov/DHHS/BEAS/cip.htm
Opening New Doors
The NH GRC and various disability groups have formally petitioned the NH State Code Review Board to amend the building code to require the installation of power door openers for new construction and renovations to make it easier for persons with disabilities and the general public to access public buildings.
Legislative Priorities
Thanks to Representative Carol Williams the N.H. Government Relations Committee has secured sponsorship for the 2010 session regarding accessible parking signs. HB485 signed into law establishes a committee to study enforcement, fraud and abuse of the walking disability placard. The committee will meet during the next six months and issue recommendations. The bill passed the House and is in the Senate. HB564-FN, relative to designating accessible parking spaces “Van Only,” is retained in the House.
Government Relations Committee seeks new members: This committee meets monthly in the Manchester office with conference call opportunities and welcomes new members with a passion for advocacy or professional, legal, public policy or health care experience. To inquire further, call Michelle Dickson at 1-800-344-4867.
Vermont
Our chapter is very excited to join forces with Vermont to strengthen and expand our efforts in New England. The Vermont Government Relations Committee is actively seeking new members to join its ranks as it begins to look at issues of access statewide. In addition, with health care being at the forefront of our legislatures agenda for the coming session, it’s time to mobilize and ensure that the outcome is beneficial to Vermonters affected by MS.
To learn more or get involved contact Christine Lloyd-Newberry at 1-800-344- 4867
New Bill Seeks to Reduce Out-Of-Pocket Drug Costs
People with MS Could Save More Than $6,000 on Disease-Modifying Therapies
In August, national health care reform took a step forward when Senator John D. Rockefeller IV (WV) introduced the Affordable Access to Prescription Medications Act of 2009 (S. 1630). A similar bill was introduced to the House in October. Like the bill in the Senate, the House bill would create a monthly $200 per medication cap on all out-of-pocket prescription drug costs, and a monthly $500 per person cap for those taking more than one medication.
According to a 2006 survey, 20% of people with MS polled either did not fill a prescription, skipped medication doses, or split pills. Many of them are insured, but a growing number of insurers are moving expensive medications onto specialty tiers, pricing the treatments out of reach.
“People with health insurance typically pay a fixed amount for drugs on the first three tiers of a formulary,” explained Kimberly Calder, MPS, director of Insurance Initiatives at the Society. “But when an insurance company moves a drug to the fourth, or ‘specialty,’ tier, the insured becomes responsible for a percentage of the drug’s cost, anywhere from 20-35% or more.” For drugs like the MS disease-modifying treatments that means thousands of dollars.
“The National MS Society is grateful to Senator Rockefeller for his leadership in supporting caps on monthly out-of-pocket costs,” said Joyce Nelson, the Society’s president and CEO. “This bill would provide peace of mind for thousands of Americans by helping to ensure access for people living with chronic disease like MS.”
For more information about the Affordable Access to Prescription Medications Act and to help advocate for public policies that benefit the lives of people living with MS, visit nationalMSsociety.org/advocacy.