Action Alerts!

• It's here!!! The new PH bill - HR 1810 and Senate Bill S775

It's that time again! The new bill for Pulmonary Hypertension Research - the Tom Lantos PH Research and Education Act of 2011 - is out and it is important for you all to make your voices heard. We urge you to take an active roll in advocating for this bill by calling, writing or better yet, making an appointment to meet with your representative and senator. This is the third attempt to pass a bill for Pulmonary Hypertension .

 

The House Bill- allocate funds for: research, awareness and the development of a database for the purpose of identifying individuals at risk of developing this condition, basic and clinical research in the cause, diagnosis, early detection, prevention and treatment of this disease as well as training programs for scientists and health professionals.
The Senate Bill -To direct the Secretary of Health and Human Services to encourage research and carry out an educational campaign with respect to pulmonary hypertension,

and for other purposes.
 

For More Information: The current bill are concise and easy to understand; you should take a few minutes to read the text. It’s easy to find. Simply go to the Library of Congress link below, type in Pulmonary Hypertension Research or HR 1810 or S775

Outcomes of Recent Legislation

• New Rules for How Medicare Pays Suppliers for Oxygen Equipment

Changes in law require Medicare to change the way it pays suppliers for oxygen equipment and supplies. You will still be able to get your oxygen equipment. However, you should know about the new rules that start January 1, 2009.

How does the recent law change the way Medicare pays for oxygen equipment and related supplies?
 

Previously, the law stated that you would own the oxygen equipment after you rented it for 36 months. Under the new law, the rental payments will end after 36 months, but the supplier continues to own the equipment. The new law then requires your supplier to provide the oxygen equipment and related supplies for 2 additional years (5 years total), as long as oxygen is still medically necessary.
 

To learn more about what this means to you, go to: CENTERS FOR MEDICARE & MEDICAID SERVICES.

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• Genetic Information Nondiscrimination Act of 2007 (S358)

The purpose of this legislation is to protect individuals from discrimination in health insurance and employment on the basis of genetic information. Establishing these protections will allay concerns about the potential for discrimination and encourage individuals to participate in genetic research and to take advantage of genetic testing, new technologies, and new therapies. The legislation will provide substantive protections to those individuals who may suffer from actual genetic discrimination now and in the future. These steps are essential to fulfilling the promise of the human genome project.   Read more about S 358 by going to: http://thomas.loc.gov
This became Law May 21, 2008

Advocacy, Contacts and Other Useful Resources

• Advocacy

Advocating for PH – What You Can Do and Why It’s Important

Don’t be afraid to visit your local representatives / senators. Part of their job is to listen to their constituents, to learn about the issues that are important in their jurisdiction and to vote the will of the people they represent. A visit – perhaps by a small group of PH patients from your support group (4 is a good size group) – would go a long way in advancing the PH cause.
 

As you may know, politicians are usually in their home territory during the month of August, mid November through most if not all of December, but that does not mean you have to wait until then to call or make your appointment to visit them. Every congressperson has local staff (aides) who can meet with you.

During your visit be sure to tell them your personal story and also how important early detection is. In the end, you want them to co-sponsor this bill. If you would prefer to call, ask to speak to the Legislative Aide. Tell the aide you want to see an important bill pass and you are calling to urge co-sponsorship.
 

Note: You might assume all politicians know about all the bills under review in any given session. That is not true. If they are not on committes where these bills are discussed, they might not have a clue. This is why it is so important to bring a bill to their attention and to explain why it's important that it pass.
 

• Contacts

Write to Congress:

 

Zip Code:
-

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

Note: You may search the Library of Congress by bill number or by entering keywords. To narrow down your search, also specify the congressional session number if you have it. This is a number something like 110, 111, 112, etc. Every two years the number increases by one.  For 2009/2010, the congress is in its 111th session.
 

• Other Useful Resources:

Government Information — Bills and information about your Representatives and Senators

Obtain your Representatives' phone numbers

Obtain your Senators' phone numbers.

Read "How Our Laws Are Made" at the Library of Congress Website.