Thursday, February 26, 2009

Advocacy is the extra bag I tote

A new bill was recently presented in the HOUSE - HR 1030. It is about Pulmonary Hypertension and what this disease can do and now we desperately need to have our Federal Representatives co-sponsor this bill. I have written to several and will continue to write to more until we can get this bill to pass in the HOUSE and move on to the SENATE. This is what I emailed.

Honorable Congressperson (you can copy this and fill in your Representatives name):

As a member of the pulmonary hypertension community, I urge you to co-sponsor H.R. 1030, the Tom Lantos Pulmonary Hypertension Research and Education Act of 2009.

Pulmonary hypertension is a simplified name for a complex health problem--continuous high blood pressure in the pulmonary artery in the lungs, resulting in an enlarged heart which can lose its ability to pump. Many associate PH with common high blood pressure instead of a distinct and grave illness. Someone with high blood pressure can live 30 or 40 more years. Without treatment, 50% of PH patients die within 2.8 years of diagnosis.

Symptoms of pulmonary hypertension may include: Shortness of breath with minimal exertion, chest pain, unusual fatigue, a dry cough, edema, heart palpitations, fainting and dizzy spells. Pulmonary hypertension is described as progressive and fatal.

The sooner a PH patient receives effective treatment, the better their prognosis. Several treatments are available, but patients see an average of three physicians before a fourth makes an accurate diagnosis--often losing a precious year, or more importantly, the deterioration for quality of life.

The Tom Lantos PH Research and Education Act of 2009 Co-sponsorship of H.R. 1030 brings us one step closer to...

  • preparing more physicians for prompt and effective management of PH
  • raising public awareness about PH symptoms
  • increasing the effectiveness of clinical researchers in the PH field

Your co-sponsorship supports improved diagnosis, improved treatment and the search for a cure to this deadly disease. Please help slow the progression of this dastardly disease and extend our quality of life.

Thank you in advance for your valuable support.

You sign your name along with address and phone number. To find out who your Representative is go to: type in your zip code (may need those additional 4 digits) and send it on.

To those of us with Pulmonary Hypertension this is so very, very important. We almost made it last time -- and every minute counts with the 111th Congress -- politicians can be slow as busy as they get.

Remember to SMILE ~ it's contagious



Jen said...

Great job Merle :))
Love that post...
I already added my name..etc...

Thx ..

Wendy's Mom said...


That was an awesome letter. I will be copying it and using it.
I use to could write very good professional letters but unfortunately today I cannot seem to write any that sounds professional.
Maybe the fluid went to my brain when it had no where else to go. LOL!!


Teddybear said...

Thank you for the info Merle, blessings to you, Deb