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Pulmonary Hypertension Research and Education Act | Medicare Equal Access | The Federal Budget and PH Research | Airline Oxygen
Tom Lantos Pulmonary Hypertension Research and Education Act
 On Thursday September 25, the entire PH community accomplished a tremendous victory — the Tom Lantos Pulmonary Hypertension Research and Education Act passed by voice vote in the House of Representatives. This could not have happened without each and every member of the PH community. You have educated your Members of Congress about pulmonary hypertension through visits, phone calls, and e-mails. Thank you! Learn more...
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
PH Community Victory:
Airlines Required to Allow Properly Tested
Portable Oxygen Concentrators
For the past several years, PH advocates have utilized opportunities — from hosting Department of Transportation (DOT) speakers at their support group meetings to submitting formal comments on proposed regulation — to communicate with DOT about the importance of accessible airline oxygen.
The PH community has worked alongside other patient advocacy organizations encouraging DOT and the FAA to allow portable oxygen concentrators on airplanes. That work paid off when DOT issued a final rule requiring airlines to accept certain approved portable oxygen concentrators onboard flights beginning in May, 2009. The rule will apply to U.S. air carriers worldwide and to foreign air carriers whose flights begin or end in the U.S. Currently, five portable oxygen concentrators are approved for passengers to carry aboard aircraft: AirSep FreeStyle, AirSep LifeStyle, Inogen One, Respirnics EverGo and Sequal Eclipse.
DOT and the FAA continue to consider airline oxygen issues critical to the PH community, including the prohibitive cost of in-flight oxygen. PHA will continue to provide opportunities to speak out about these issues as they become available. Read more
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