From their support group meetings to the halls of Congress, PH advocates are making their voices heard. Here are two first-person accounts of recent advocacy successes:

 

On March 13, PHA board member Joanne Sperando-Schmidt spoke 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. Joanne was an outstanding representative of PHA and the PH community. Read her story

Susan Temple, a 435 Campaign member and support group leader, recently held a different kind of support group meeting. She encouraged group members to invite their U.S. representatives and senators to a meeting focused on "Health Legislative Issues." The efforts were successful: Judy Mattox, a district representative from the office of The Honorable Virgil Goode attended the meeting. Read her story

 

During the same week that Joanne Sperando-Schmidt was preparing her testimony before the appropriations subcommittee, members of the 435 Campaign were also busy. They responded to a budget-related action alert with calls to their senators encouraging them to support an amendment to the FY09 budget resolution offered by Senators Arlen Specter (R-PA) and Tom Harkin (D-IA) to increase funding for the NIH. The amendment called for an additional $2.1 billion (a 10.2% increase) for the NIH in FY09. On March 13, the Senate adopted the Specter-Harkin amendment with a vote of 95-4.  While adoption of this amendment doesn't guarantee that the additional money will be provided to NIH, getting it included in the budget resolution is an important first step.

You'll remember from our last issue of PHANews that Kirsten Larson recently appeared on Discovery Health Channel's Mystery Diagnosis. Kirsten Larson continues to make waves for PH awareness.

 

On Tuesday, March 25, she shared her story with over 1.5 million viewers of The Montel Williams Show. Kirsten and her mother, Leslie, who appeared with her on the show, talked about the symptoms of PH, the difficulty of diagnosis, and the challenges of living with the disease. Toward the end of her appearance, Kirsten seized the opportunity to pull her IV pump out of her purse and demonstrate it to the audience. She also had the chance to speak to the importance of organ donation, a sentiment that was echoed by Montel Williams in the closing moments of the interview. 

 

PH awareness makes a powerful impact on huge numbers of people, both patients and non-patients alike. Kirsten's success is the result of determination, persistence and a passion for the PH community. Visit the PHAware website to find out how you, too, can get involved.

Lisa Sabine (pictured with coworkers on Blue Jeans for PH day, kneeling bottom right) found her office to be fertile ground for raising awareness and funds for PH. Her employer, Nationwide Insurance, selects one charity a month in each of its offices for a community outreach project.

 

When Lisa's application for PHA was selected for the month of December, Lisa organized a Blue Jeans for PH day, allowing her coworkers to wear jeans to work for a day in exchange for a donation. The event also included a 50-50 raffle. In addition to raising valuable funds to support the programs that are so important to the PH community, Lisa's coworkers learned about PH.

 

Lisa first got involved when her sister-in-law started selling PHenomenal Hope bracelets in memory of her daughters. Lisa decided to help out by wearing one herself and selling them to her coworkers from her desk. People started asking questions. That's when she realized the tremendous potential of her office and sprung into action.

 

Read more of Lisa's story | Learn how to get involved

The National Institute for Health and Clinical Excellence (NICE) has suggested that the National Health Service (NHS) of England and Wales should discontinue allowing doctors in those countries to prescribe all but the cheapest of available treatments to new PH patients. If the NHS accepts these recommendations, thousands of newly diagnosed PH patients in the United Kingdom will be affected. Read an article about how this decision could impact patients, or learn more at PHA-UK's website.

 

Our friends at PHA-UK are fighting with passion and determination to keep this recommendation from becoming policy. This is a turn of events that underscores how necessary the work of PH advocacy and awareness is in fighting for progress against PH. It is equally important that we commit ourselves to holding on to the successes that have already been won. Get involved