Steve White goes to washington ... to advocate!

Steve White (left) with Katie Kroner, PHA Director of Advocacy and AwarenessSteve White (left) with Katie Kroner, PHA Director of
Advocacy and Awareness

In April, PHA Board member Steve White traveled to Washington to help get the Tom Lantos Pulmonary Hypertension Research and Education Act of 2011 introduced with a good number of original sponsors. This is his story as recorded immediately after that visit.

I don't know about you, but whenever I hear the First Amendment of the Constitution mentioned on the news, I usually think of freedom of religion, freedom of speech, a free press and our right to assemble. But it is when I exercise the last clause of the First Amendment that I am most aware of how unique our form of government is and of how proud I am to be an American. I am referring to our right to petition the government for redress of grievances.

I took full advantage of this right on Monday, April 4, when I joined our friends from PHA — Gavin Lindberg, Katie Kroner and Rino Aldrighetti — on Capitol Hill to visit the offices of my senators and congressman from Massachusetts and other members of the Massachusetts Congressional delegation to seek their support for the Tom Lantos Pulmonary Hypertension Research and Education Act of 2011 which will soon be introduced by Rep. Kevin Brady (R-TX) and Sen. Bob Casey (D-PA).

It was the perfect day to be in Washington. It was warm and sunny and the cherry blossoms and flowers were at their peak. And the reception we got from various congressional staffers was just as warm. Some of you may have met Sara Mabry, Sen. Casey’s legislative aide, at the PHA Congressional Luncheon. She is fully committed to helping us get our bill passed and is working closely with the senator and with Rep. Brady’s office to get the bill introduced soon.

My congressman, Rep. John Olver (D-MA), has been a longtime supporter of our efforts, and his staffer assured us that he will be an original co-sponsor this time as well. When we visited the office of Rep. Jim McGovern (D-MA), the congressman himself came out and said, “What’s up?” Gavin summed up our plea for him to be an original co-sponsor in less than 25 words and dropped the name of Tom Lantos, whom he knew had been a close friend of McGovern’s. At that, Rep. McGovern exclaimed, “The answer is ‘yes!’”

Other staffers we met listened attentively as we told them what PH is and why this bill is so important. I told them about my daughter Christen and how she had lived with PH for some time before she was finally diagnosed, in spite of many visits to the doctor for shortness of breath and other symptoms that I now know are classic signs of PH. We explained how the bill will help educate doctors and the general public about PH so that the disease can be diagnosed as early as possible and thus prolong life. At the end of every meeting, we asked the staffer to urge his or her boss to become a co-sponsor of our bill. And I reminded them that I’m from a huge French-Canadian family spread all over Massachusetts that really wants this bill passed. In fact, I think Gavin had the impression that I had more cousins at the end of the day than I had in the morning! It was an exhilarating day and a successful one.

Each of us has the right to do what I did on Capitol Hill. We all have the right to ask our government to help us solve problems that none of us can solve alone. Who else but the government would do anything to educate the public about a disease like PH? Who else but the government would focus research efforts on a disease that is unlikely to make big fortunes for drug companies?

So if you happen to be in Washington, or if you can make a special trip there like I did, drop in on your representatives. You’ll be surprised at what a warm reception you’ll get. Tell them your own PH story. Ask them to support our bill to fight PH. You’ll make a big difference, and you’ll feel the pride in America that I felt when I visited Capitol Hill on April 4.

Update: Thanks in part to Steve White’s visit, our bill was introduced with one Senate co-sponsor and five House co-sponsors.



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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.