Back From The Hill

We did it.  The National MS Society's District Activist Leaders came together in Washington D.C. from all over the country for the 2019 Public Policy Conference.  We were trained, briefed and given all the resources needed to share with Congress members who represent our state.  A sea of orange engulfed on Capital Hill to represent every single person living with Multiple Sclerosis.

My husband and I teamed up with another couple from Nevada.  We are from Reno and they are from Las Vegas.  We met for the first time at the conference and we clicked immediately.  We went in and set it off as we lobbied to pass legislation to:

• Remove barriers to generic prescription drugs by eliminating gaming in system.
• Rein in medication price increases
• Cap out of pocket costs in Medicare part D, 25% to 40% of MS patients are on Medicare.
• $2.5 billion dollar increase for the NIH (National Institute of Health), the country's premier institution for medical research and the single largest source of biomedical research funding in the world.  All current MS disease modifying therapies are a result of NIH funded basic research.
• Protect patients from surprise billing.  Patients need reasonable notification if the facility or provider is out-of-network.  Health plan provider directories should include up to date and accurate information.

Nearly 1 million people in the U.S., more than twice the previously reported number, are living with MS, according to a recent landmark study.  All MS medications are tier 5 drugs aka specialty drugs and are very expensive.

We discovered that most of the people we met with are on board and have already begun to effect change for the same issues for many reasons.  We exist to help MS patients get what is needed to live their best lives!