MS Activist Blog
Check out the latest federal news and share your views!
http://msactivist.blogspot.com
Action Alert
A Little Time Makes a Big Impact! Become an MS activist and make your mark against MS.
- Visit nationalMSsociety.org/get-involved/take-action/index.aspx
- Take Action and sign up to receive federal and state alerts.
- Recruit a friend!
Government Relations Committee
Volunteers Wanted!
Are you a person with MS or have a connection to the disease? Do you have professional expertise in the area of law, medicine, disability, fundraising, policy, or community organizing? Do you have a commitment to working towards achieving short and long-term goals? Are you willing to speak before government officials, at public hearings, or with the media? Are you committed to working as a team and working on projects? If any of these describe you, contact Michelle.Dickson@nmss.org.
Health Care Reform Implementation
Beginning July 1, new health insurance programs are offering coverage to uninsured individuals with a pre-existing health condition, including MS. Need assistance understanding this new program or advice about health insurance? Call 1-800-344-4867.
Federal Update
Congressional In-District Visits 2011
Current public policy priority issues are funding for MS research in the Congressionally Directed Research program in the Department of Defense, support for the Adult Day Achievement Center Act, and legislation that would allow neurologists to qualify for Medicare payment incentives, in order to improve access to these providers for people living with multiple sclerosis.
Maine
Governor Threatens Changes in Maine Care Eligibility!
In July, Governor LePage announced he would push for income eligibility changes in the state’s Medicaid program from 200% FPL to 122%, potentially reducing eligibility for 30,000 childless adults. The chapter will track this and weigh in next winter. If you are a consumer potentially affected by this proposed change, we would like to hear from you!
Your Input Needed!
A survey is underway for Mainers with MS, family members and professionals to assist the Government relations committee to better understand barriers to day-to day living and identify ways to make changes through policy. Other tasks include better understanding the legislative process, connecting with key elected officials and partnering with other health and disability organizations. To complete the consumer survey go to the Maine issue page on the chapter website under the “Take Action” link or contact Michelle Dickson to have a survey mailed to you.
New Insurance Option for the Uninsured
The Dirigo Health Agency (DHA) is administering a new Pre-Existing Condition Insurance Plan available to individuals and self-employed of one through the DirigoChoice program. Eligibility for the plan requires one must meet the following criteria: 1)No medical coverage for the previous 6 months before applying for assistance 2) Have at least one of the following pre-existing medical conditions and provide supporting documentation from a medical provider which includes multiple sclerosis 3) be a citizen or national of the US and able to provide a copy of their US public birth certificate or passport or lawfully present with permanent resident status in the US and able to provide a copy of their permanent resident card. Subsidies are available on a sliding scale to enrollees with household incomes under 300% of the Federal Poverty Limit ($32,490 for a single, $66,150 for a family of four) and assets under $60,000 for a single and under $120,000 for a household of two or more. Contact DHA customer service at 1-877-892-8391.
Massachusetts
Legislative Priorities
-
S455 An Act Reforming Insurance Prescription Fee Practices: Support
This bill prohibits insurers from creating specialty tiers that require payment of a percentage cost of prescription drugs. An insurer shall not establish tiers of prescription drug co-pays in which the maximum prescription drug co-pay exceeds by more than five hundred percent the lowest prescription drug co-pay charged under the health benefit plan -
H1557 An Act Promoting Accessible Housing for Persons with Disabilities: Oppose as written.
This bill’s initial intent is to increase access to accessible housing and includes $60 to $120 million as an appropriation. It goes on to include sections that would weaken the Architectural Access Board reach and has the potential to take some of the strong safe guards out of the building code that are essential to access. The funding aspect of the bill is positive, but the implementation methods are very damaging. We are opposing this bill as written. If defeated, we are confident that the funding to support housing production and modification is not at risk. -
H2352/H2383/S548 An Act Relative to Prescription Drug Coupons: Support
Amends the prohibition against offering rebates or coupons for use of certain medical devices or medicines to allow for the use of coupons or rebates for out-of-pocket expenses. Massachusetts is the only state in the country that does not have pharmaceutical discount programs which provides coupons and co-pay assistance. -
S1246 An Act Relative to the Architectural Access Board: Support
Extends the jurisdiction of the Architectural Access Board (AAB) to make it co-extensive with the Americans with Disabilities Act, thereby permitting the AAB to seek certification of its regulations by the federal government, and allowing contractors to comply with both state and federal regulations by referring to a single set of provisions.
Home LINKS Preserved in House Budget!
Thanks to the commitment of the Department of Public Health, The FY’12 state budget includes level funding for Home LINKS, the chapter’s case management program. We are pleased that this program remains a public-private partnership supported by both state and chapter funds that will allow us to continue providing these vital direct services to individuals with MS.
The ADA Turns 21!
Over 300 people gathered at City Hall Plaza, Boston for the 21st anniversary of the Americans with Disabilities Act. Public officials and activists joined in celebrating the milestone passage of one of the nation’s most significant civil rights laws. The Boston Mayor’s Commission for Persons with Disabilities hosted this event and the Greater New England Chapter served as an event sponsor. Boston Mayor Thomas Menino and Kristen McCosh, Boston Commissioner of Persons with Disabilities, made opening remarks. The keynote speaker was long time activist Paul Spooner, Executive Director of the Metro West Center for Independent Living. Other speakers included MS activist Janice Ward. The Mayor highlighted significant improvements in Boston to make the roads and sidewalks accessible.
Power Door Openers Pass First Hurdle!
An amendment to require power door openers in the state building code introduced by MS activists last July has passed a first hurdle through approval by the state’s Architectural Access Board subcommittee. Passage will require the full board’s approval with public input and approval of government agencies. Many thanks to MS activist Joann D’Amico Stone and Attorney Carol Steinberg for their leadership!
Amending Air Conditioning Regulations
The chapter has joined Boston advocates and state public health officials to explore how to amend state regulations that relate to provisions for when heat must be in use for individuals living in apartment complexes.
Massachusetts Paratransit Commission Public Sessions
Governor Patrick has convened the commission for the Reform of Community, Social Service and Para Transit Transportation Services in the Commonweath. Six public comment and dialogue sessions are scheduled throughout the Commonwealth. Written comments can also be submitted. All meetings will be held from 3-5 p.m. and all locations are accessible to persons with disabilities and by public transit.
September 13, 2011
Lawrence Public Library
September 21, 2011
Cape Cod Communtiy College, Barnstable
October 4, 2011
Union Station, Worcester
October 12, 2011
Pioneer Valley Planning Commission, Springfield
October 27, 2011
BRTA Intermodal Center, Pittsfield
November 7, 2011
State Transportation Building, Boston
New Hampshire
NH Catastrophic Illness Fund Eliminated
This state fund which provided financial assistance up to a maximum of $2,500 to qualified low-income residents who incur out of pocket medical expenses has been defunded and removed from statute despite the ongoing efforts of activists from many organizations. If you benefitted from this fund, we would like to hear from you as we continue to explore other sources of assistance.
MS Therapies & Medicaid
Chapter staff and MS neurologist Ann Cabot, MD testified before the Medicaid Drug Use Review Board to ensure all MS disease modifying drugs and Ampyra are renewed in the formulary with the least restrictive access possible. Avonex, Betaseron, Copaxone, and Rebif remain available without prior authorization from a doctor. Extavia and Ampyra (a walk-aide) still require prior authorization. Gilenya, the first FDA approved oral therapy was released from the blocked status but will require prior authorization.
Vermont
Universal Health Coverage Enacted!
A landmark bill was approved by the legislature and signed by Governor Shumlin. The chapter will continue to weigh in on regulations and track implementation closely.
Banning Specialty Tiering for Prescription Drugs
Advocates also took the lead on an amendment to S.104 to prohibit the insurance industry from issuing “specialty tiers” on prescription drugs which would result in costly co-pays that are a percentage of the cost of drugs. The final bill approved by the legislature included a one-year moratorium on specialty tiers. The chapter is seeking to remove the moratorium through new sponsored legislation this fall.
Public Accessibility in Downtown Burlington
MS activists are seeking to team up this fall to assess the accessibility of entrances and other features in downtown Burlington’s famous Church Street Marketplace area in conjunction with AARP’s Livable Burlington project. No experience necessary—all are welcome! If interested contact Shanna McCabe, Community Program Coordinator at shanna.mccabe@nmss.org or 1-800-344-4867.