Congressional Champions

Hooked by Patient and Caregiver Stories

Who are the lawmakers who have championed pulmonary hypertension (PH) causes in the past three decades? These members of Congress have backed PH-related legislation because of personal or constituent connections with the community.

Rep. Kevin Brady (R-Texas) has served the state’s 8th congressional district since 1997. More than 20 years ago, Brady introduced the first PH-related federal legislation, the Pulmonary Hypertension Research Act, after a request from Jack Stibbs, whose daughter Emily has PH. The bill urged the National Institutes of Health to expand research into PH. Brady, who plans to retire next year, has been a steadfast champion of the PH community ever since. Over the years, he has introduced other PH-related legislation.

Rep. Tom Lantos, D-Calif., served in Congress from 1993 until his death in 2008. Lantos joined Brady in championing several PH-specific bills after his granddaughter, Charity Sunshine Tillemann-Dick, was diagnosed. Charity and Lantos organized several major fundraising and awareness events, including an opera performance and a rock concert.

Rep. Lois Capps, D-Calif., served the state’s 24th congressional district from 1998 until her 2016 retirement. Before serving in Congress, Capps was a nurse and health advocate for more than 30 years. After Lantos died, the Pulmonary Hypertension Association

Above left: PHA members from California with Rep. Lois Capps (left). Above right: Jack Stibbs (left) with Rep. Kevin Brady. Left: PHA’s Katie Kroner, Rep. Jamie Raskin and Kerry Babylon.

(PHA) asked Capps to step up as a Democratic leader on PH legislation. When she agreed, she credited the power of Charity’s story. Capps had heard Charity speak and sing at a PHA event.

Rep. Jamie Raskin (D-Maryland) has served the state’s 8th congressional district, which includes PHA’s office, since 2017. Raskin committed to become champion on behalf of the PH community after one constituent meeting. At a recent PHA congressional briefing, Raskin said, “When someone falls ill, that is misfortune. When government is in a position to help that person and does not, that is injustice, and we must take action to rectify it.”

Sen. Bob Casey, D-Penn., became a PH champion in 2009 after Colleen Connor participated in PHA’s annual congressional briefing in Washington, D.C. Before the meeting, Colleen told Casey about the challenges of living with pulmonary hypertension and asked him to introduce a PH bill in the Senate. Within an hour, Casey’s staff called Connor to say he would introduce the bill. Since that time, Casey has introduced several pieces of PH legislation and remains a champion in the fight against PH.

TAKE ACTION

You, too, can develop a legislative champion. When you share your story, you can convince others to join the fight against PH: Business owners make donations. Reporters publish news stories. And members of Congress are compelled to action.

PHA’s Advocacy Action Center provides an easy way for you to educate your members of Congress about the challenges of PH and how Congress can help. Discover sample messages to Congress about protecting access to telehealth, limiting step therapy requirements, increasing research funding and more.

GET STARTED x PHAssociation.org/advocate or call 301-565-3004 x758

Sen. Bob Casey