The Bill is in...now it's up to you

Did you know that there is a bill in Congress dedicated to making life better for people with PH? It’s called the Pulmonary Hypertension Research and Diagnosis Act and was introduced by our friends Reps. Kevin Brady (R-TX) and Lois Capps (D-CA). Sen. Bob Casey (D-PA) is working on a Senate version to be introduced this month.

Some of you may be familiar with PH legislation from previous years, but our new bill is completely different. What's important about it in the current legislative environment is that it’s designed to make a big impact without asking the government to spend any new money.

The bill may be new, but its success still depends on you. Take a look at the guest post below from PHA’s Grassroots Campaigns Manager, Elisabeth Williams, to learn more.

PHers Educate Congress on New PH Legislation

Taking a stand together to advocate to Congress about PH is standing together to save a life.
We need more early diagnosis, more education in the medical field, more affordable treatments.”                                                                                                             
                                                                                        --Nicole Cooper, PH patient

This spring, Reps. Kevin Brady (R-TX) and Lois Capps (D-CA) introduced a new bill called the PulmonaryHypertension Research and Diagnosis Act of 2013 (H.R. 2073) in the House of Representatives (H.R. 2073). Since then PHers have been emailing, calling and scheduling visits with their Members of Congress to educate them about how this bill will improve life for those living with pulmonary hypertension.

This budget neutral bill calls for the creation of a committee within the federal government focused on giving people living with PH longer, better lives. The group, including representatives from NIH, the Centers for Disease Control and the Department of Health and Human Services would work together to:

• Advance the full spectrum of PH research from basic science to clinical trials
• Increase early and accurate diagnosis of PH
• Educate medical professionals and the public

So far, these efforts have resulted in several Members of Congress co-sponsoring the bill, including:

Rep. Timothy Bishop (D-NY)

Rep. Jim Costa (D-CA)

Rep. Peter King (R-NY)

Rep. Richard Neal (D-MA)

Del. Eleanor Holmes Norton (D-DC)

Rep. Devin Nunes (R-CA)

Rep. Peter Roskam (R-IL)

 

Stand Together and Advocate!

The success of this bill depends on you! Join other PHers who are standing together to push this bill through Congress. Here’s how:

1)      Contact Your Members of Congress! Educate your own Member of Congress and ask him or her to co-sponsor the newly introduced Pulmonary Hypertension Research and Diagnosis Act of 2013. It’s easy! Simply send an email using PHA’s new online advocacy tool. All you have to do is add your name and zip code and click on Take Action.  That will show you your Member of Congress. Then just take a few minutes to personalize the sample letter with your PH experience. With that brief effort you'll be maki9ng a big difference in helpong your Member of Congress understand the need for more treatments and early diagnosis.  (Oh, and if your Member of Congress is one of those listed above...change the sample letter to just say Thank You for supporting the Bill!)

2)      Sign up for the 435 Campaign! Stand with other PHers who are working to ensure that all 435 Members of Congress support legislation critical to the PH community. We’ll give you the tools to help you easily share your story and make PH more visible in Congress. Email Elisabeth at Advocacy@PHAssociation.org to join the 435 Campaign.

3)      Stay in the know! Stay up-to-date on late-breaking Congressional news and opportunities to advocate for PH legislation. Sign up for PHA’s monthly Advocacy in Action Alert emails

Rev. White Comes to Wahington...

This week, PHA Board member Steve White came to Washington to help get the PH Research and Education Act introduced with a good number of original sponsors.  This is his story.  If you'd like to to what you can to help advance our common cause through contacting your member of Congress (in your own community) or creating media awareness, contact Elisabeth Williams, PHA's Grass Roots Campaign Associate.

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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 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 Senator 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 Congressional Luncheon. She is fully committed to helping us get our bill passed and is working closely with the senator and with Mr. Brady’s office to get the bill introduced within the next week or so.

My congressman, Rep. John Olver, has been a long-time 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 Mr. 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.

A Quick Lesson in Persistence

When Elisabeth Williams, who works with PHA's grass roots advocacy and awareness efforts, told me the story of what Dick Turnsall had accomplished in working with his member of Congress, I thought it carried a great message on what one person, sticking with it, can accomplish.  Thanks Dick for what you've taught us and Elisabeth for sharing his story in your guest blog.

If you want to know something about what a little persistence and initiative can get you, Dick Tunstall, one of PHA’s 435 Campaign members can fill you in. As a member of the 435 Campaign the last three years, Dick contacted his Members of Congress about pulmonary hypertension (PH) through letters and visits. Last year, Dick set his sights on getting Representative Himes (D-CT) to cosign H.R. 1030 the Tom Lantos Pulmonary Hypertension Research and Education Act of 2009.

The road began in July 2009, when Dick started working with Representative Himes’ staff to schedule a visit with Mr. Himes in his Washington D.C. office. After several months of back and forth, which included Dick inviting Representative Himes to his Support Group meeting, Dick met with Himes in October 2009. The meeting was very successful--Representative Himes expressed interest in co-sponsoring H.R. 1030!

But the story doesn’t end there. By early March 2010, Tunstall was disappointed to find out that Representative Himes had still not signed onto H.R. 1030. Instead of giving up, Tunstall, persisted and followed up with Mr. Himes office again. The result of all of that hard work? As of May 24, 2010, Representative Jim Himes (D-CT) is officially listed as a co-sponsor on H.R. 1030.

Good work Dick—indeed, persistence does pay off!

Find out how you can help with the PH Research and Education Act  in the House (H.R. 1030) and in the Senate (S. 2803).  Click on Read About This Bill at the top or bottom of each page to find out whether your Member of Congress or Senators are co-sponsoring the PH Bill..  Learn more how you can  connect with your own Member of Congress through the 435 Campaign