Pulmonary Hypertension Unit

Advocacy PHact or PHiction?

The following article highlights the role of advocacy in the US in bringing about awareness and funding for research into the treatment of Pulmonary Hypertension.

Test Your Knowledge of PH Advocacy

December 27, 2016

By Katie Kroner, PHA Senior Director, Advocacy and Treatment Access

As the Pulmonary Hypertension Association (PHA) celebrates its 25th anniversary in 2016, we reflect on how far we have come in our advocacy efforts. Thanks to a community of thousands of PH advocates working together, we are raising awareness on Capitol Hill and furthering our mission every day. Test your knowledge of PH advocacy.

1. Who Introduced the first PH bill?
Rep. Kevin Brady (R-TX) introduced the first PH bill in 2000. Congressman Brady is now the Chairman of the House Ways and Means Committee and remains one of our congressional champions along with Rep. Lois Capps (D-CA) and Sen. Bob Casey (D-PA).

2. What do the 9:30 Club and the Hungarian Embassy have to do with PH?
Another early champion of PH legislation in Congress was former Rep. Tom Lantos. Congressman Lantos, a Hungarian-American, was the only Holocaust survivor to serve in Congress and was close friends with the Hungarian Ambassador to the U.S. at the time. Lantos’ granddaughter, Charity Sunshine, was also building a career as an opera singer, despite a recent diagnosis of PH. In 2006, the Hungarian Ambassador suggested that his rock band perform a concert to raise awareness and funds for PH. The result was “Rockin’ for a Cure,” held at Washington, D.C.’s 9:30 Club with special guest Charity Sunshine.

3. True or False? PH advocacy has generated more than $25 million in PH research funding.
TRUE! And counting. The PH Research and Diagnosis Act has evolved over time based on the success of the PH community’s advocacy efforts. Since 2005, this bill has driven funding by the National Heart, Lung and Blood Institute (NHLBI) with support from the PH community driving a recent announcement of an even greater investment in PH research.

4. What federal agency met with the PH community in 2012?
In 2012, the Food and Drug Administration (FDA) announced that it would hold a series of meetings to hear directly from patients about their priorities and ideas about drug safety and effectiveness. Hundreds of organizations applied, and the FDA chose 16 disease communities—including pulmonary arterial hypertension.

5. True or False? Congress wants the Centers for Disease Control and Prevention (CDC) to raise awareness of PH.
TRUE! When Congress passed the 2016 funding package for the federal government, it included binding language indicating that the National Institutes of Health should prioritize PH research. Additional language directs the CDC to increase early diagnosis and public awareness of PH and to report back in a year on what has been accomplished.

6. Does PHA work on any legislative issues besides the PH bill?
YES! While the PH Research and Diagnosis Act is the cornerstone of PHA’s legislative agenda, PHA knows there are other issues—such as treatment access—that impact the PH community every day. We’re working with partner organizations to advance a bill that would limit co-insurance costs for PH medication and another that would protect the ability of non-profit organizations to provide insurance premium assistance.

Adapted from PHA’s Pathlight Magazine, a publication of the Pulmonary Hypertension Association – Summer 2016 // Volume 25 No. 3