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History of Success

Although pulmonary hypertension (PH) bills do not always get passed by Congress and signed by the President within the two years of a congressional session, advocacy by the Pulmonary Hypertension Association (PHA) consistently leads to victories for the PH community. Here are just a few:

PHA at U.S. Capitol

  • 2000 – The first PH-specific bill in Congress was introduced in 2000 by Rep. Kevin Brady (R-Texas).
  • 2001 – Former Rep. Tom Lantos (D-Calif.) joined Rep. Brady in introducing a new PH bill.
  • 2005 – The House Energy and Commerce Subcommittee on Health held a hearing on PH — one of the only disease-specific Congressional hearings of the year.
  • 2006 – The National Heart, Lung, and Blood Institute (NHLBI) funded two PH "Centers of Excellence," providing nearly $25 million for new PH research.
  • 2009 – The PH bill passed the House of Representatives by unanimous consent.
  • 2013 – NHLBI Pulmonary Vascular Disease Phenomics Program (PVDOMICS) teams of investigators will perform comprehensive, deep phenotyping across the current World Health Organization (WHO)-classified PH clinical Groups 1 through 5. This will help to find the cause of PH.
  • 2014 – Congress includes language in the federal budget encouraging the National Institutes of Health (NIH) and Centers for Disease Control and Prevention (CDC) to support PH research and awareness programs. The CDC has provided more than $500,000 in grants to PHA that have supported programs that educate medical professionals and the public about PH.
  • 2015 – PHA introduces the PH Research and Diagnosis Act, H.R. 3520.
  • 2016 – Congress passed the 2016 funding package for the federal government. It includes binding language indicating that the NIH should prioritize research on PH. Additional language directs the CDC to increase early diagnosis and public awareness of PH and to report back in a year on what they’ve accomplished.

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NORD

The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.