I Secured a PH Research Act Co-sponsor. You can, too!

Colleen BrunettiColleen Brunetti, PH Patient;
Member, PHA Board of Trustees

In May 2012, I visited Washington, D.C., and talked to my Members of Congress about the Tom Lantos PH Research and Education Act, which will ensure increased funding and attention on PH research and education, something well worth fighting for. This bill needs bipartisan support to increase the chances that it will be scheduled for a vote and pass Congress. The best way to accomplish that is to ask Republican and Democratic Members of Congress to co-sponsor it.

Going to D.C. is something I've wanted to do for a long time. I’ve participated in PHA’s National Call-In Day for two years in a row, sent emails to my Members of Congress and encouraged friends and family to join in my advocacy efforts.

These are all great things to do, and PHA makes it simple by laying it all out for you. But nothing beats going to see a Member of Congress in person, and that’s what I knew I really needed to do if given the opportunity. However, being “given” time to make the trek from Connecticut to D.C. wasn’t really happening. So I made the time. Honestly, when I heard a fellow PHer was going to D.C., I decided to crash the trip. It seemed like an opportunity too great to pass up: spend time with a phriend, visit the PHA office and hug the staff for all its hard work and, of course, hit up Capitol Hill.

The process was incredibly easy. First, I contacted Elisabeth Williams in the PHA Advocacy & Awareness department. She put me in touch with Dane Christensen, PHA’s Washington representative. Dane guided me through everything I needed to know. Even with my very tight schedule, he was able to finagle meetings with two of my Members of Congress. Dane prepped me extensively before I arrived. He also talked with me in person before the meetings; by the time we sat down in each office, I was set and ready to rock it.

It’s unusual to get to meet directly with your senator or representative, but that’s okay. Generally, their health legislative assistant (LA) will attend these meetings and pass the information you share directly to the Member of Congress. That’s how it worked for me.

We started with Sen. Richard Blumenthal’s office. I told my story to the senator’s health LA., emphasizing how important Sen. Blumenthal’s co-sponsorship would be. It was great that I really only had to talk about what I knew — my own patient experience.

After dropping some information off with Sen. Joe Lieberman’s office, we crossed through this crazy underground “official business only” transportation system to get to Rep. John Larson’s office. That meeting went much the same as the first. We were well received.

All in all, I’d say the day was very successful. It was really cool to get glimpses of the official buildings of our nation’s capital and see what it's like behind-the-scenes. It was also empowering and gratifying to know that in our sometimes tumultuous political system, people are still taking the time to listen. In fact, I can say for sure that this is happening because a few weeks later I got an email from Sen. Blumenthal’s office letting me know that he was indeed going to co-sponsor the bill! I could not have been more thrilled. Of course, Sen. Lieberman and Rep. Larson will be hearing from me again. Securing Blumenthal’s support was a fantastic first step, but the work is far from over.

If traveling to Washington, D.C., is not an option, you can visit your representative and senators right in your home state! Several times throughout the year, Members of Congress leave Washington and head home to hear constituents’ views about the issues. It’s a perfect opportunity to make a visit.

If you go to Washington, let PHA or your congressional office know if you have mobility issues. Congressional staff are willing to accommodate constituents with these needs.

Securing co-sponsors for the Tom Lantos Pulmonary Hypertension Research and Education Act is one more thing you can do to make a difference in our fight. Please join us!

For more advice and resources, contact Elisabeth at or 301-565-3004 x753.


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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.