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Vol 9, No 1 (Spring 2010)

PHA Moves Up!

To accommodate program and staff growth, PHA has moved into new space in its current building. Please note that the new address is Suite 1000. The rest of the address and phone numbers remain the same: Pulmonary Hypertension Association, 801 Roeder Road, Suite 1000, Silver Spring, MD 20910-4496. Phone: 301-565-3004.

PHA Releases Statement about Stem Cell Therapy

In May 2009, PHA's Scientific Leadership Council (SLC) released the following statement regarding stem cell therapy:

Stem cell use has not been adequately studied and neither the efficacy nor safety of stem cells to treat PAH has been established. At this time, the SLC recommends stem cell therapy only as part of a registered, controlled clinical trial in carefully selected patients. We recommend that patients discuss stem cell therapy (and any new therapies) with their PH specialist.

 

The above statement has since been endorsed by both the Executive Committee and Pulmonary Circulation Assembly of the American Thoracic Society. For more information and to read PHA's fact sheet on “Pulmonary Hypertension & Stem Cell Therapy,” please visit https://www.phassociation.org/Patients/Treatment/StemCellTherapy.

PHA Launches Services for Caregivers and Families

PHA is pleased to announce the launch of the Kerry Bardorf Family Support Program. With the addition of a new staff person this spring, PHA will expand the services offered to families of children with PH and caregivers of adult patients. Caregivers provide the PH community with a backbone of support that often goes unheralded. This program, named for the late Kerry Bardorf, a PH patient who inspired those around her to make life better for others, allows PHA to serve and honor the difference caregivers make in the lives of patients. The Kerry Bardorf Family Support Program is partially funded by a grant from the Jansen Family Foundation.

Robyn Barst Pediatric Research Fund Established

PHA recently announced the establishment of the Robyn Barst Pediatric Research Fund, following a $215,000 donation from Robyn Barst, MD. PHA's hope is to establish an endowed research fund for pediatric PH research, and Dr Barst's generous donation brings PHA one step closer to achieving that goal.

Dr Barst, a pioneer in the field of pediatric PH research and clinical care, has served on PHA's Board of Trustees and is a past Chair of the Scientific Leadership Council. In 2008, she received the PHA Award of Excellence in PAH Care. She served as Director of the Pulmonary Hypertension Center at Columbia University from 1982-2008.

PH and … Brochure Series Released

PHA launched a new series of brochures about pulmonary hypertension and 6 associated diseases and conditions. The PH and … brochures discuss the connection between PH and the following: Hereditary Hemorrhagic Telangiectasia (HHT), HIV, Liver Disease, Methamphetamine Use, Sickle Cell Disease, and Scleroderma. The brochures were written by members of PH Clinicians and Researchers who specialize in the associated conditions and translated into patient-friendly text with the help of PH Resource Network member Michele Gilbert, RN, MSN, APN-C, CCRN, CNN. These brochures are designed to help increase awareness about the prevalence of PH in associated-disease patients and provide needed educational resources for patients and members of the medical community.

The PH and … brochures have been produced in two series: one for medical professionals and the other for patients and caregivers and are available online at www.PHAssociation.org/Patients/AssociatedDiseases and www.PHAssociation. org/Medical/AssociatedDiseases. For more information, contact PHA at 301-565-3004.

Social Security Disability Listings are Being Updated… and PHA Has a Hand In

Recently, the Social Security Administration (SSA) invited PHA's Scientific Leadership Council (SLC) to give a presentation on how to best include pulmonary hypertension in the SSA's Listing of Impairments that are used to determine if a patient is eligible for Social Security Disability. This is the newest development in PHA's ongoing work with SSA to improve PH patients' access to disability benefits.

On April 7, Ronald Oudiz, MD presented to the Institute of Medicine (IOM) committee charged with updating the Social Security Cardiovascular System Listings. For information about the meeting contact Margaret at Margaret@PHAssociation.org or 301-565-3004 x773.

PHA's “Building Medical Education in PH” Partnership Offers June Symposium

The 4th Annual Pulmonary Hypertension Symposium: Updates on Classification and Therapies was be held June 3, 2010 at Yale School of Medicine as part of PHA's Building Medical Education in PH series designed to advance medical understanding of PH through partnerships between PHA and PH centers during CME events.

To partner with PHA for your upcoming CME event, contact 301-565-3004 or Medical@PHAssociation.org

Support Available for New Patients

Newly diagnosed PH patients can receive an Envelope of Hope via their PH physician's office. With free materials from PHA, it's never been easier to provide the information and support patients are looking for. All patients need to do is fill out a request postcard, send it to PHA, and they will receive a mailing of educational and support materials. To obtain referral postcards for your office or clinic, contact EOH@PHAssociation.org or call 301-565-3004 x777. PHA membership brochure displays are also available by contacting FPOC@PHAssociation.org

Pediatric Critical Care Medicine Publishes Supplement on Acute Pulmonary Hypertension in Infants and Children

A supplement to the March 2010 issue of Pediatric Critical Care Medicine summarizes the proceedings of a December 2008 symposium on critical treatment strategies for acute pulmonary hypertension hosted by the Pediatric Cardiac Intensive Care Society. Contributors address current management of acute pulmonary hypertension in children, highlighting the current limitations and future challenges facing pediatric intensive care providers. Available data from human studies, including relevant adult studies, is critically reviewed within this supplement. Recommendations for clinical practice are made, representing the latest clinical advances in treating acute pulmonary hypertension in children.

PHA Offers Insurance Advocacy and Education Resources

PHA's Insurance Guide provides tools such as tips for communicating with insurance companies and templates for letters to advocate on behalf of your patients and ensure that your patient doesn't have to wait to get the treatment they need. Whether you are speaking directly with an insurance representative, compiling medical information to send an insurance company, or writing a letter on behalf of your patient, your advocacy makes a difference. PHA's Web site is currently being updated to improve the materials available to clinicians as they work with their patients' insurance providers. To receive updates or for immediate questions, contact Margaret at Insurance@PHAssociation.org or call 301-232-3004 x773.

Calendar of PH Activities

To have your event for PH healthcare providers considered for listing in future issues of Advances in Pulmonary Hypertension, send your announcement to Priscilla@PHAssociation.org

PHA's 9th International Pulmonary Hypertension Conference and Scientific Sessions

June 25-27, 2010

Garden Grove, California, USA

www.PHAssociation.org/conference

European Respiratory Society Annual Congress

September 18-22, 2010

Barcelona, Spain

www.erscongress2010.org/

American College of Chest Physicians Annual Meeting

CHEST 2010

October 30 - November 4, 2010

Vancouver, British Columbia, Canada

www.chestnet.org/accp/chest/chest-annual-meeting

American Thoracic Society International Conference

May 13-18, 2011

Denver, Colorado, USA

www.thoracic.org.