From our hotel room, this is how Reagan National Airport in Washington, D.C., looks at 4 a.m.
Imagine waking up at four in the morning, working for nearly 12 hours and not getting paid a single cent for your efforts, but still feeling like giving more of yourself as the sun set.
Welcome to our day advocating on Capitol Hill.
How do we #FlexMSMuscle? By advocating for people with MS here on Capitol Hill.
We recently returned from our fourth National Multiple
Sclerosis Society Public Policy Conference in Washington, D.C. We joined nearly
300 MS activists from across the nation to meet with our Senators and members
of Congress to educate them and urge them to take action on MS-related legislation.
We got home from the three-day conference on March 6, but OUR collective work (read: you also can still get involved!) is just beginning to influence our elected officials to act on these top issues:
ACCESS TO MS MEDICATIONS Our request to legislators: Pass legislation to remove barriers to generics, rein in medication price increases and cap out-of-pocket costs in Medicare Part D.
MS RESEARCH FUNDING Our request to legislators: Sign the Dear Colleague Letters supporting $16 million for the MS Research Program and $2.5 billion increase for the National Institutes of Health (NIH); as well as pass legislation that reauthorizes the Patients Centered Outcomes Research Institute (PCORI).
AFFORDABLE, QUALITY HEALTH COVERAGE Our request to legislators: Introduce legislation to address surprise medical bills.
We aren’t exaggerating when we say that this truly was our
best experience at PPC and advocating on The Hill! Check out these photos and
our video to see why.
We, along with friend and fellow Michigan MS activist Tammy Willis, joined nearly 300 MS activists and flooded Capitol Hill in MS-orange ties and pashminas. Our first meeting was with Senator Debbie Stabenow, who has been very vocal about the outrageous costs for prescription drugs. It was humbling when she immediately greeted each of us with a hug because she knows who we are and supports our efforts. Senator Stabenow was so taken with the story related to Dan’s MS medication that she asked him to write her the story of how he has seen its annual cost balloon to more than $90,000. This is an increase of more than 800% from when it first was available in 1993 for just over $10,000, and there has been no changes to the medication since then.Staying on the Senate side of the Capitol, we hustled over to meet with Senator Gary Peters. This was the first time we actually met face-to-face with him in D.C. Senator Peters expressed familiarity and concern about surprise medical billing issues that could occur when an insured individual is billed the difference between the rate paid by the health plan and the out-of-network providers’ charges. A Kaiser Family Foundation poll found that 67% of Americans fear unexpected medical bills. The issue is even more critical for those with MS. A 2013 study in the journal Multiple Sclerosis and Related Disorders found that individuals with MS had 5.1 times higher direct medical expenditures than those without MS. Our first visit in the House of Representatives was with Joe McNally, a legislative aide for Representative Debbie Dingell. While we aren’t her constituents per se, Joe was very interested in what we had to say on behalf of the people within her district who are living with MS. He asked us a lot of great questions to better understand our stories and asks for Rep. Dingell, especially for reauthorizing PCORI. PCORI funds comparative effectiveness research to determine which treatments work best, for whom, under which circumstances. To date, it has funded $69 million in MS research to answer important questions in MS treatment that traditional research cannot answer. As usual, we were very excited to meet OUR Congressman, Representative John Moolenaar. We blew him away with the newly released fact that nearly 1 million people in the United States—more than twice the previously reported number—are living with MS, according to a landmark study. This is why we told him it’s so important for Congress to support a $2.5 billion increase for the NIH, which is the country’s premiere biomedical research institution and the largest funder of biomedical research in the world. In fact, all current MS disease-modifying therapies are a result of NIH funded basic research.We finished our day on The Hill meeting with Representative Dan Kildee, who considers us unofficial constituents as we represent his constituents living with MS and he represents the district Jennifer grew up in and where her parents still live. Plus, it’s easy to remember us because his wife’s name is Jennifer (Get it? Dan and Jennifer AND Dan and Jennifer!). We first met Representative Kildee three years ago, and he is a huge proponent of the MS cause. He, like Senator Stabenow, is concerned about access to MS medications. We shared with him that anticompetitive tactics are keeping many needed generic drugs (which typically drive down drug prices) from entering the market. Despite a record number of generic drug approvals, approximately 43% of generics approved by the FDA since January 2017 are still not on the market. Representative Kildee said access to affordable medication is critical. He commented that sure, everyone has access to a $50 million home, but having this access means nothing if you can’t afford it.
Whew! Such a day. What a rush. And our work continues as MS activists. We continue to advocate, but we can’t do it alone. Remember the two times as many people living with MS than previously reported? You also can get involved with your voice and your stories. Get started by visiting www.nationalMSsociety.org/advocacy and advocate for change.
Thank you for your work. Thank you.
It truly is our pleasure, Doug! Hoping to make a difference for ourselves AND the nearly 1 million Americans living with MS.