Take life by the horns and hang on!!

Advocacy Alert: Take action, tell your story, be heard and get pulmonary hypertension on the agenda of the new administration!

The Obama transition team has made this request of the American people:  Tell us your story, why health care is important to you, or what you'd like to see an Obama-Biden administration do and where you'd like the country to go.

Chances are that, just like most elected officials, few members of the Obama transition team have ever heard of pulmonary hypertension. Even fewer are knowledgeable about the expense and complexity of treatment and the challenges PH patients face in finding the health care coverage they need. You can help them understand! No one knows better the impact a personal story than you, members of the 435 Campaign.

You can view the related PHA action alert here:  http://capwiz. com/phassociatio n/issues/ alert/?alertid= 12322401 OR go directly to http://change. gov/agenda/ health_care_ agenda and share your PH story in a few paragraphs. If possible, please send a copy of your message to Katie Kroner, PHA Advocacy and Awareness Director at Katherine@PHAssocia tion.org.

 Here are some key points you might want to include:

 • Pulmonary hypertension (PH) is high blood pressure between the heart and the lungs. It is deadly and currently incurable but increasingly treatable.

• PH can occur without a known cause or secondary to other diseases including sickle cell, lupus, and HIV. Recent NIH research suggests that as many as 40% of sickle cell patients develop moderate to severe PH.

• Symptoms include shortness of breath, dizziness and bluish lips and skin. They are similar to symptoms of asthma so PH is often misdiagnosed or undiagnosed. Without treatment, 50% of those diagnosed survive 2.8 years.

• Approximately 30,000 people in the U.S. are currently diagnosed with PH. This is up from 3,000 in 2001. Many more individuals are misdiagnosed or undiagnosed.

• A single PH therapy can cost as much as $200,000 a year. Patients lives depend on the passage of the Ending the Medicare Waiting Period Act in the 111th Congress.

• In the 109th Congress, the Pulmonary Hypertension Research and Education Act had 147 co-sponsors in the House of Representatives. In the 110th Congress it passed the House and moved on to the Senate. The bill focuses on much needed medical education and research toward a cure. Its passage in the 111th Congress is critical.

Write to Your Elected Officials – YOUR OPINION COUNTS!

This link will take you to the Legislative Action Center hosted by the League of Women Voters. Just enter your zip code and click "GO"

Search the Library of Congress for current or past legislation, including the bills listed above.

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With this link you can find any bill that is currently before Congress or the Senate