CALIFORNIA MS ACTIVIST IN ACTION

MS activist Melanie Rowen recently provided eloquent and compelling testimony before the California State Assembly Committee on Health about difficulties affording her MS disease modifying therapy. She was there advocating for AB 1800, a bill that would help people like her and so many others facing exorbitant out-of-pocket (OOP) costs for drugs to manage her disease and its symptoms. Assembly member Fiona Ma (D-San Francisco) introduced the bill and it is co-sponsored by the National MS Society’s California Action Network and the statewide health care consumer advocacy coalition Health Access. 

 

Melanie lives with MS and testified, “When I first called to order my medication, I learned that my insurance plan required me to pay 30 percent of the price - my monthly cost for that one medication alone ended up averaging about $800. And that was only one of my medical expenses.” Melanie is not alone. Most people with MS are prescribed one of the “disease modifying therapies,” but also take four to six other medications to ease symptoms and help stay as healthy and independent as possible. Four MS therapies are routinely positioned among the top 12 drugs most often found on what’s known as the “specialty tier” that subjects individuals to a 25 to 33% co-insurance. Specialty tier drugs can range from $17,000 to $40,000, with some medications costing more than $100,000 per year. 

AB 1800 would help limit out-of-pocket costs for individuals like Melanie and would help them predict their annual medical expenses. Specifically, it would establish a single deductible for all covered health care benefits and an annual cap of $5,950 for individuals and $11,900 for families on all OOP costs for covered benefits. The OOP cap will include consumer costs for hospitalization, physician visits, prescription drugs, co-payments, deductibles, and any other form of cost sharing required by health insurance plans.

On April 24, the Assembly’s Committee on Health passed AB 1800 with a 13-6 vote. Next, it is headed to Appropriations. Click here to read the news coverage and click here for the Society’s analysis of the bill.  

Yet another example of how MS activists are raising their voices to change the lives of people with living MS. Great job, Melanie and keep up the good work, everyone!

MS Activist Melanie Rowen

State Success: Rhode Island Purchases 13 New Accessible Taxis

On April 13, 2012 thirteen new accessible taxis were introduced to Rhode Island, greatly improving access to transportation for the mobility impaired. Local taxi companies purchased these vehicles, with support of the Federal Transit Administration’s New Freedom Program. The New Freedom Program aims to reduce barriers to transportation services and expand the transportation mobility options available for those living with a disability. Click here, to read more about the program.

The RI Public Transit Authority (RIPTA) and the RI Division of Public Utilities and carriers also provided support to help bring these vehicles to Rhode Island. The taxis will serve seventeen communities in Rhode Island, including Providence, Newport and Woonsocket. T.F. Green Airport in Warwick will also be served.

A Bill to mandate accessible taxis was first introduced in 2005 with the lead sponsor Rhode Island State Representative Elaine Coderre (D) but faced much opposition. The bill finally passed in 2010, but then it took two more years to actually roll-out the taxis. Primary advocates for the taxis were the Governor’s Commission on Disabilities, the National MS Society, Rhode Island Chapter and Ocean State Center for Independent Living.

Access to transportation provides a vital lifeline for people with disabilities to engage in employment, education, healthcare, and community life. Yet too often, people with disabilities lack access to affordable, accessible and reliable transportation options. The Society congratulates Rhode Island for taking this important step forward in providing people with disabilities equal transportation access.

MS Activist Anna Liebenow, Rhode Island Chapter