At the Capitol

The month of April has been a very busy, yet rewarding, time for the advocate advisory group at MEadvocacy.org. We have reported to you about our “boots on the ground” adventure with our “Act Up for ME Demonstration” at the Capitol and the White House.  

Despite some initial snags and thanks to our intrepid, determined advocate, Susan Kreutzer, the march/walk on Washington, facilitated by George Washington University students wearing pictures of ME patients, was a major achievement. 

At the same time, we were engaged behind the scenes with noteworthy advocacy operations. It came to our attention that important developments were happening in the month of April in Congress. This is the time when appropriations hearings take place for the next year’s  budget. The U.S. House and Senate Committees on Appropriations are responsible for passing spending bills. The bills passed by the Appropriations Committee regulate expenditures of money by the government. As such, it is one of the most powerful of the congressional committees.  Both the House and Senate Appropriations Committees are divided into House Subcommittees and the Senate Subcommittees that cover a large range of government agencies.

This year, the Appropriations subcommittee hearings, which decide the 2016 budget for the Senate and House for labor, health and education, were taking place at the end of April. Individuals and/or organizations had the opportunity to submit written testimony to each of these subcommittees, as well as request an actual speaking spot for the House hearing.  We quickly jumped into action sending requests to appear in person, as well as composing written testimony to both the House and Senate Appropriations subcommittees for labor, health and education. 

The Senate and House Hearings

We pulled our resources together and were able to successfully send in our written testimonies.  Here is our testimony for the Senate and the one for the House. In addition, we spent time preparing informational packets to be distributed to various congressional offices.  Susan Kreutzer, our “advocate on the Hill”, volunteered to fly to Washington, DC in case we were selected to appear in person for oral testimony.  She was able to guarantee herself a reserved seat at the Senate hearing.   

Unfortunately, we were not able to secure a speaking spot this time. We learned that competition is fierce for these speaking opportunities.  It is usually the big groups who have a lot of clout that are chosen to testify. But, Susan was in attendance at both the Senate and House subcommittee hearings and reported back to us. 

The House Hearing took place on April 29th.  Twenty three presenters spoke about a variety of topics, since this subcommittee covers labor, health and education.  Most of those testifying were representing very large groups and were talking in the billions.  This meeting was not televised. 

The Senate Hearing on April 30th was one of the most consequential hearings because Dr. Francis Collins, director of the NIH,  presented NIH’s proposed programs and innovations to support the need for NIH’s budget for 2016.  Representatives of the 27 institutes of NIH were present including Dr. Anthony S. Fauci, director of  NIAID. Dr. Fauci spoke about funding for research using gene-editing technologies in human embryos.  He explained the importance of NIH’s Brain Initiative which could bring major advances for diseases like alzheimer’s, autism and epilepsy. The NIH proposes to create a study using a national cohort of one million Americans to understand health and disease. 

Q & A Session

An interesting Q & A session followed with questions from all members of the committee. Questions revolved around which disease needs the most funding. Of course HIV/AIDS was mentioned by many.  Dr. Fauci said that they are working towards the goal of the total eradication of HIV/AIDS in the near future. Alzheimer’s was mentioned by a couple of committee members, stating that they have witnessed the devastation of the disease in their close family members. A senator mentioned that Barbra Streisand called him, advocating for a Woman’s Heart Center. Unfortunately, no one shared that they have a family member with myalgic encephalomyelitis or chronic fatigue syndrome.  No famous star called to speak on our behalf.  ME doesn’t seem to be on anyone’s radar. We are putting in a lot of effort to try to change that in the future.  You can watch the archived video of the hearing here. 

Letter to Congress

MEadvocacy is determined to raise awareness of the devastation, lack of care, education and funding for this disease.  We have composed our own letter to Congressional Representatives and have started the process of reaching out to each of our own Representatives, as well as any Senator or Congressman who sits on a Committee that has jurisdiction over the HHS. 

What You Can Do

In order to strengthen ME patients’ voice on the Hill, our group drew up a letter for U.S. patients to send in to their own congressional representatives telling them why we urgently need $250 million funding for ME.  To simplify the process, MEadvocacy purchased the simple “one click app” which takes about one minute to use and has the ability to instantly reach each individual’s congressman and their two senators. 

In addition to sending the "one click" letter, you can help us in our effort to reach as many congressional representatives as possible. We would like to engage you to join our current campaign to reach out to Congress to aid us with our fight for more NIH funding for ME.  As a constituent of your state and district, you have the privilege and right to reach out to and contact the offices of your representatives. You can do this via email, phone or an actual visit.   

As part of MEadvocacy.org patient advocacy outreach plan, we have experienced advocates who can assist you with the following in reaching out to your representatives. 

• writing and e-mailing

• setting up and making a call

• setting up and making a visit

• follow up contact

• status updates and progress 

We are well aware that many ME patients, are not able to physically meet with their representatives in Washington DC or their home states.  In these situations, Congressional Representatives are willing to make themselves (or their legislative staff) available for phone meetings with you or your designated representative.

If you would like to partner with MEadvocacy.org to have your voice be heard on the Hill, please contact Susan Kreutzer at [email protected] to discuss how we can help facilitate this for you.  

In Conclusion

This has been a very satisfying and a real learning experience for our advocacy group and we know that our efforts to bring about a new type of advocacy platform for patients with this illness offers new hope to represent ME patients more effectively in Congress. We have accomplished so much in just the first quarter of 2015, we welcome you to join us to see how much more we can accomplish together.  We invite you, your family members and friends to join our grassroots advocacy movement  and become a member of our organization to get your voice heard.  You can find us on our website, facebook page and follow us on twitter. Together we can climb the steps to Congress needed to solve this illness.