|
 Do you plan to contact your members of Congress regularly about current issues? Consider signing up for the 435 Campaign. Campaign members have the opportunity to receive “first alert" emails straight into their Inbox. Join: advocacy@PHAssociation.org
Pulmonary Hypertension Research and Education Act |Genetic Non-Discrimination | Medicare Equal Access | The Federal Budget and PH Research | Airline Oxygen
Pulmonary Hypertension Research and Education Act
 From organizing fun walks to hosting golf tournaments and from giving an interview on national news to lobbying on Capitol Hill, the PH community makes a big impact. Together, we are powerful!
In 2005-2006, 248 Members of the House and 13 Members of the Senate co-sponsored the PH Research Act. Although that bill didn’t pass, it generated a HUGE success — the funding of two Specialized Centers of Clinically Oriented Research focused on PH. Together, we are making a difference! (Read more about the success of the PH Research Act of 2005).
In 2007, a new PH-specific bill was introduced in the House of Representatives: The PH Research and Education Act of 2007 (H.R. 3368). Your help is needed to make this bill a success. Begin with this easy-to-use e-mail template. Then, consider following up with a phone call or even a local visit to your Members of Congress.
Together, we will continue to build Congressional support for the PH research needed to find a cure. Together, we are unstoppable!
PH Research and Education Act fact sheet (PDF)
Take action today!
Ask your representative to co-sponsor the PH Research and Education Act of 2007.
Genetic Non-Discrimination
|
The lack of [genetic non-discrimination] protection has immediately impacted my family — I would very much like to know if I carry a mutation for PH, but cannot find out because of the danger that if I do other members of my family might lose health or life insurance or career opportunities -- Gail Boyer Hayes
I have pulmonary hypertension, and I am aware of so many young people with this terrible disease that can be familial. Genetic testing is so important for these families, but they must be reassured that it can not be used against them. -- Mary Gillam |
Help Prevent Genetic Discrimination
Genetic screening, counseling, and testing are important options for the PH community, especially for those with a history of pulmonary hypertension in their families. Genetic technology is developing rapidly. Such technology can provide individuals with the tools to learn more about their genetic history and how it may impact their health, but they should not be afraid that this information will result in a loss of health insurance coverage or employment.
The PH community supports strict standards for the use and disclosure of genetic information and strict penalties against any who violates these standards.
Help prevent genetic discrimination by urging your Senator to co-sponsor the Genetic Information Non-Discrimination Act (GINA). GINA sets strict standards for the use and disclosure of genetic information and imposes penalties against companies that violate these provisions.
Learn more and TAKE ACTION
GINA Sample Call Script
Medicare Equal Access
My husband, daughter and myself are Medicare beneficiaries who NEED your help. My daughter and I are Medicare disability beneficiaries under 65 and cannot buy Medigap coverage in Florida. My husband is 67, with a serious heart condition, and still working at Wal-Mart to be able to cover us with Blue Cross Blue Shield because we cannot buy Medigap. We need your help to fix this! We are going broke trying to cover the cost of medical care!
-Vera Ellen Rich, Chiefland, Fla. to her Representative |
The Ending the Medicare Waiting Period Act (H.R. 154, S. 2102) would exempt SSDI recipients with life-threatening illnesses like PH from the two-year waiting period for Medicare. Take action today!
H.R. 1282, The Medigap Access Improvement Act, would require all states to offer Medigap policies to disabled recipients regardless of their age. Support this bill now!
Did you know that Medicare benefits are different for individuals receiving Social Security Disability Insurance (SSDI) than they are for those over the age of 65? Benefits differ in two important ways.
First, individuals receiving SSDI must wait two years before becoming eligible for Medicare coverage. For many PH patients, that means two years of paying $20,000 to $100,000 a year for just one PH treatment, not to mention additional medications and medical procedures!
Second, many states offer Medicare recipients over age 65 additional assistance with coinsurance costs through Medigap plans but do not offer these plans to disabled recipients. Only 24 states require that Medigap coverage be offered to disabled recipients.
The PH community is taking a stand — we support equal access to Medicare benefits for disabled and elderly recipients. You can help!
Take action now to support Medicare equal access:
Ending the Medicare Waiting Period | Medicare Access Improvement Act
The Federal Budget and PH Research
Over 100,000 Americans suffer from pulmonary hypertension, but it remains challenging for new investigators to receive the funding they need to explore treatment options and the possibility of a cure. Without the support of the federal agencies like the National Institutes of Health, many of these studies would never occur. Throughout the federal budget process, PHA will highlight opportunities to take action. With hundreds of PH advocates regularly speaking out, the PH community is a BIG voice in support of PH research.
 In 2008, PH patient and board member Joanne Sperando-Schmidt testified before the House of Representatives Appropriations Subcommittee on Labor, Health and Human Services, and Education. PHA was one of only 30 organizations selected from approximately 700 applicants to testify before the Subcommittee during its one day of public hearings. Read about Joanne’s experience in her own words
Read fact sheet on the Federal Budget Process and PH Research Funding (PDF)
Airline Oxygen
In the past, PH patients who needed oxygen while traveling by air had very few options. Today, many airlines are taking voluntary steps to permit portable oxygen concentrators onboard airlines. However, traveling with oxygen still poses challenges. Read more
There is no current action on this issue. |
