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 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
Tom Lantos PH Research and Education Act of 2009
 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.
On Thursday September 25, 2008 the entire PH community accomplished a tremendous victory — the Tom Lantos Pulmonary Hypertension Research and Education Act of 2009 passed by voice vote in the House of Representatives. This year, let’s take a PH-specific bill all the way to the President!
E-mail your representative and request their co-sponsorship of our new PH bill, the Tom Lantos PH Research and Education Act of 2009 (H.R. 1030). 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!
Ending the Medicare Disability Waiting Period Act
[Senate Alert Box] [House Alert Box]
I can no longer work due to PH. To continue my health insurance I am now paying $500/month instead of the $72/month that was my premium before I had to stop working... I have no idea how I will be able to continue to pay the $500 COBRA payment while waiting the 24 months for Medicare. The 24 month waiting period is a death sentence.
-Fern Engle, Colorado |
Individual 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 more than $100,000 a year for just one PH treatment, not to mention additional medications and medical procedures!
The Ending the Medicare Waiting Period Act (H.R. 1708, S. 700) would exempt SSDI recipients with life-threatening illnesses like PH from the two-year waiting period for Medicare.
Support equal access to Medicare benefits for disabled recipients:
Contact your senators. Contact your representatives.
Health Insurance Coverage Protection Act
[Senate Alert Box] [House Alert Box]
I have just been diagnosed (at 44 years old) and have started a medication called Revatio. I am currently on the lowest dose and it would cost $1,600 for a 30 day supply if I didn't have insurance. That price will increase if the doctor determines that I should be on a higher dose. If this medication does not work, the others drugs are much more expensive. I am afraid that I would reach my lifetime cap before my lifetime is over. My retirement income from my teacher's retirement in the future will not come close to covering my medication or treatment procedures.
-Beth Baird, Georgia
My daughter, Becky, age 20 has had PH since age 6. At present she has to be on 3 medications in an attempt to control her PH and two of the three each cost in excess of $100, 000 per year.
-Pam Adams, Texas
I have celebrated my 16th anniversary of my diagnosis while watching with alarm as my insurance limit approaches more closely.
-Damaris M. Corrigan, Georgia |
Pulmonary hypertension patients, along with patients suffering from other chronic, life-threatening disorders, are often faced with thousands of dollars in medical expenses yearly.
While insurance can help curb the cost of treatment and care, many insurance plans are limited by a lifetime cap. A lifetime cap is a limit placed on the amount of funds an insurance company will allot towards an individual's insurance benefits. Once this limit is met, the insurance company will no longer provide coverage for the individual. Some caps are as low as $1 million.
Take action today to support higher lifetime caps!
Contact your representative. Contact your senators.
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.
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.
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 about flying with oxygen.
Home Oxygen
Regulations impacting Medicare coverage of home oxygen equipment and supplies have been changing rapidly over the past few years. The Centers for Medicare and Medicaid Services (CMS) posted answers to many frequently asked questions about these changes. CMS also issued an alert encouraging home oxygen consumers to notify them of oxygen provider misconduct.
If you experience challenges in getting the services you need from your home oxygen supplier that you believe are related to the changes describe above, PHA wants to hear from you!
Please send your story to insurance@PHAssociation.org. Unfortunately, PHA is not able to assist individuals directly with these types of situations, but we will be exploring ways to ensure that Medicare policies are meeting the needs of pulmonary hypertension patients. Sharing your experience will help us get a clear picture of what’s working, what’s not, and how we can help. Be sure to include your name, contact information, a description of the challenge you are facing and how it impacts your daily life. |
