PHA News
In This Issue
Action Alert: Medicare Coverage for Pulmonary Rehab
Fight Against PH Making Global Gains
Defeating PH Can Be More Than a Wish: Donate to PH Research
Symposium: Spotlight on Advocacy Day
Teen with PH & Scleroderma Finds Her Sound
Awareness Month is Coming!
Become a Hero by Fundraising for a Cure
Patient-Professional Dialogue Fostered on New Newsletter
Access to Investigational Drugs Expanded
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Second Annual Painting a Stroke of PHenomenal Hope
September 12, 2009
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September 17, 2009
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September 19, 2009
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September 26, 2009
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Vol 10/Number 17 August 21, 2009
PHA logoPHANews Editor - Sally Maddox
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Contributing Editors - PHA staff
 
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HAVE YOU BENEFITTED FROM PULMONARY REHAB?

Encourage Medicare to Cover Pulmonary Rehabilitation for PH Patients

Take ActionMedicare recently released its proposed ruling that describes how it will cover pulmonary rehabilitation (PR). Under the current proposal only COPD patients would be covered by Medicare for PR.

Because this is only a proposed ruling, we still have a chance to change their minds! PHA will be submitting comments encouraging Medicare to cover PR for PH patients. If you are a PH patient who has benefited from pulmonary rehab, take a moment before the August 31, 2009 deadline to submit your own comments to convince Medicare to cover PR for PH patients.

Learn how to submit a comment

THE FIGHT AGAINST PH IS MAKING GLOBAL GAINS!
In this summer's issue of Annals of Thoracic Medicine, the head of the Saudi Advisory Group for Pulmonary Hypertension (SAPH), Majdy Idrees, MD, writes about the expert attention being given pulmonary hypertension in Saudi Arabia. He starts with the story of how PHA in the U.S. began and how his group started from similar humble beginnings.
 
He then outlines the strides SAPH has made. In addition to publishing the Saudi Guidelines for the Diagnosis and Management of PAH and creating the first national registry of PH patients in Saudi Arabia, SAPH is committed to furthering research in the field and organizes annual scientific meetings to educate doctors and nurses in the region.
 
 
Learn more about PH internationally on PHA's PH International section.
Research Appeal
DEFEATING PH CAN BE MORE THAN A WISH

Donate to PH ResearchEach year, PHA-sponsored researchers work to uncover new methods for early detection, better treatments and ultimately a cure for this terrible disease. Just like you, we look with hope toward the future and the day when the suffering caused by pulmonary hypertension comes to an end. But until that day, PHA will work to support new and veteran researchers on their path of discovery.
 
Donate now and join us in our fight against PH with a donation to PH research. Defeating PH can be more than a wish - it can one day become a reality.


PH Resource Network Symposium
SPOTLIGHT ON ADVOCACY DAY

 
2009 PH Resource Network Symposium, Leading Progress, Creating Partnerships: Empowering the Interdisciplinary PH Team, September 24-26, 2009, Hyatt Regency Crystal City in Arlington, VA
PH advocacy on Capitol Hill is too important to pass up. It's an opportunity to express support for all of the patients and caregivers who struggle to have a normal life with PH.
-Sheryl Williams, RN, BSN, after lobbying for the first time during Advocacy Day 2007
Medical ProfessionalsIf you are an allied health professional, this is an event you don't want to miss! Advocacy Day is a unique opportunity for allied health professionals to share their stories, and the stories of their patients, with Members of Congress while requesting co-sponsorship of PH legislation.

Advocacy Day kicks off the 2009 PH Resource Network Symposium on Thursday, September 24. No previous experience necessary - the day begins with a comprehensive orientation. Lunch and transportation to Capitol Hill are provided.
 
 
If you are a PH patient or caregiver, or a PH treating physician, share this information with your nurses and other allied health professionals. To learn more about how you can get involved on Capitol Hill, contact Katie at 301-565-3004 x749.
TEEN WITH PH & SCLERODERMA FINDS HER SOUND
Haley PilkingtonPH and scleroderma patient Haley Pilkington began taking voice lessons in the fifth grade.  Now 14, Haley is training with singing coach Deborah "Zuke" Smith.
 
Haley and her mother, Caroline, were recently featured on Brett Manning Singing Success Online. Diagnosed with scleroderma at the age of 2 and with PH last year, Haley recounts her journey to overcome physical and emotional challenges using humor, hard work and hope to become the confident and talented performer she is today.
 
EMPOWERED BY HOPE - AWARENESS MONTH IS COMING IN NOVEMBER!
With August coming to a close and November just a couple of months away, the PH community is beginning to plan its activities for PH Awareness Month. Awareness Month is a time when we call upon the strength of our numbers and the power of our common cause to reach into our communities to fight back against PH together.
 
Last year, PHers from all across the country lobbied their public officials, tabled local events, garnered media coverage, raised money through fundraisers and Special Events and much more.
 
It's never too early to be thinking about how you can raise awareness this November. Stay tuned to PHANews for tips and ideas, starting with the Special Events feature below. Ready to start planning now? Check out our online action kit or contact us at 301-565-3004 x753 or awareness@PHAssociation.org. We're here to help you!
BECOME A HERO TO THE PH COMMUNITY THIS NOVEMBER BY FUNDRAISING FOR BETTER LIVES AND A CURE

PHA Special EventsAwareness Month Feature - Special Events
 
Planning an event for a worthy cause is easier than you think! From casual bowling nights with family and friends, to cozy neighborhood parties and bake sale raffles, every event brings us closer to a PH cure - no matter how large or small its scale!
 
Consider hosting an event of your own this Awareness Month! Through time, people power, and a dash of funds, you'll have the basic ingredients for a successful fund and awareness-raising event. Dive in by visiting our online event planning guide.
 
man with oxygen running for a cureNot ready to take the plunge just yet? You can still be a part of the growing PH community and raise money to fight this disease. To find an event near you, visit the PHA Special Events section. Even if you can't attend an event, you can contribute online to support Special Event organizers and the rest of the PH community this Awareness Month!
MORE PATIENT-PROFESSIONAL DIALOGUE OFFERED THROUGH ATS PAR NEWS

In the interest of advancing the dialogue between PH patients and healthcare professionals, the American Thoracic Society's Public Advisory Roundtable (ATS PAR) invites you to sign up for a free subscription to ATS PAR News or view past issues online.
 
The ATS PAR News will keep you up-to-date on initiatives being undertaken by ATS and ATS PAR, as well as issues of interest to patient advocates and public interest organizations. The publication includes an advocacy page, summaries of research findings in pulmonary, critical care and sleep medicine from around the world, and profiles of ATS PAR members, their organizations and individual patients.
 
ATS is a leading medical association dedicated to advancing pulmonary, critical care, and sleep medicine. PHA is one of 15 organizational members of ATS PAR which incorporates the patient and family perspectives into the Society's activities.
NEW FDA RULES EXPAND ACCESS TO INVESTIGATIONAL DRUGS

Last week, the U.S. Food and Drug Administration (FDA) published new rules expanding patient access to investigational drugs. The revisions clarify procedures and standards as well as guidelines for when and how much a manufacturer can charge patients for investigational drugs.
 
PH in the NewsPH IN THE NEWS
Actelion Receives FDA Approval to Expand Use of Tracleer to Early-Stage PH Patients
(PharmaTimes) - The U.S. Food and Drug Administration has approved the Swiss company's supplemental New Drug Application for Tracleer (bosentan) to treat patients with mildly symptomatic 'functional class II' pulmonary arterial hypertension. Read article
 
Health Advice: Can Stem Cell Therapy Treat Pulmonary Hypertension?
(U.S. News & World Report) -- PH expert Dr. Roger Blumenthal provides advice on whether stem cells are a credible treatment for the condition. Read article

 

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The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.