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March, 2008
Joanne Sperando-Schmidt Testifies Before Congressional Subcommittee
On March 13, PHA board member Joanne Sperando-Schmidt spoke before the House of Representatives Appropriations Subcommittee on Labor, Health and Human Services, and Education. PHA was one of only 30 organizations selected from approximately 700 applicants to testify before the Subcommittee during its one day of public hearings. Joanne was an outstanding representative of PHA and the PH community. Read her story...
 On March 13, I was given an exciting opportunity to address the Labor, Health and Human Services, and Education subcommittee of the House of Representatives Appropriations Committee regarding 2009 appropriations for the National Institutes of Health. The HHS is the U.S. government’s principal agency for protecting the health of all Americans and providing essential human services. PHA was one of only 30 organization selected to testify out of a pool of 700 applicants. It was my honor to represent the needs of the pulmonary hypertension community.
I was coached and encouraged by PHA’s lobbyist, Gavin Lindberg, who I’ve had the pleasure of meeting several times at PHA’s offices and at past conferences. As I waited outside the Rayburn building, where many members of the House of Representatives have their offices, I had a great view of the Capitol building – and some extra time to contemplate the task in front of me - at 2:00 that afternoon, I had 4 minutes to testify in front of the committee and ask for increased funding to the NIH for PH research.
I was joined by Gavin, and PHA’s Rino Aldrighetti and Katie Kroner. Our first stop was the offices of Congressman Kevin Brady of Texas. Congressman Brady has been a tremendous advocate for the PH community and we met with several members of his staff and discussed the PH Research & Education bill. It was really something to see the wheels of our government process turning in person. We then visited the offices of the late Congressman Tom Lantos. As you know, Congressman Lantos passed away in February. When his granddaughter, Charity Sunshine, was diagnosed with pulmonary hypertension, he became a strong advocate for our community. We met with his staff and his wife, Annette, and although they were busy packing up the office, they stopped to talk with us. I got to thank Mrs. Lantos for everything the congressman had done for us and she promised to continue to help our cause.
At 2:00 we filed into the room where the subcommittee was assembled. I was the 7th of 15 public witnesses testifying. I didn’t have time to be nervous because I was listening so intently to the testimony of the people who went before me and I realized that we all were asking for the same thing. We were asking for the government’s help in the form of funds for research and awareness-raising and everyone who sat before the committee had a compelling story to tell. My turn came and I sat down and addressed the committee. I did my best to convey the seriousness of pulmonary hypertension by telling my family story (I’m the third family member to be diagnosed with PH) and asking the committee to recommend an increase for the NIH budget. I’m fairly certain I did it within the 4 minute timeframe – whew! Chairman Obey gave us some feedback about the current state of the NIH budget and thanked me for my testimony.
It was a privilege to represent the PH community “on the Hill” and I hope and pray that we get the funding we requested. There are so many exciting things going on in the world of PH research and it is a time for tremendous hope. Thank you to Gavin Lindberg and PHA for guiding me through this wonderful experience. |
