A Quick and Informal Summary of PHA

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A Quick and Informal Summary of PHA’s Activities in 2005

Like each of the preceding years in the fight against pulmonary hypertension, 2005 has been a time of rapid expansion and encouragement. PHA provides this document to give you a quick picture of all that has been done on your behalf and with your help. Early in 2006, you will receive PHA’s full annual report of our fifteenth anniversary year.

This is the story of members of a community stepping forward to help each other, as they help themselves. This is a story of heroes and hope.

Thank you for all that you do.

In 1927 Franklin Delano Roosevelt created the Warm Springs Foundation, which in 1938 became the National Infantile Paralysis Foundation and then the March of Dimes. These organizations are widely credited with leading the fight to a cure for polio. Roosevelt believed people could solve any problem if they worked together. As he wrote in 1937,

“The general purpose of the foundation will be to…unify the fight in every phase of this sickness.”

In the spirit of that success, here are some of this year’s activities and programs and the words of a few of the many patients, family members and medical professionals who made them possible.

Patient Services:

PHA’s electronic resources are constantly expanding to incorporate new information and to allow for increased communication. Launched in 1997, www.phassociation.org, PHA’s website has grown mightily over the years. By the beginning of the fourth quarter of 2005, the number of visitors to this more than 3,000 page site had increased to 115,000 per month. The primary message board now receives over 500 messages per week…and our bi-weekly electronic newsletter PHAnews has over 5,000 subscribers. Here is part of a note from a message board user and patient named Colleen,

A little over a year ago, PHA’s PH Patient’s Survival Guide was published in its third edition. This 280 page book was written by Gail Boyer Hayes with the help of over 20 volunteers and medically reviewed by Ron Oudiz, M.D. and his team of over 20 medical professionals. It has served thousands in our community. In 2005, translations of the book progressed in Spanish, Japanese, Arabic, Chinese and Dutch. This guide is quickly becoming a worldwide resource. In her introduction to the third edition, Gail, a patient diagnosed in 1983, writes,

PHA has long wanted to develop insurance resources for PH and this year made a strong beginning. A new Insurance section has been added to the website (www.phassociation.org/insurance). It includes a new insurance manual as well as a wealth of Medicare, Medicaid and Social Security resources. As the government prepares for the new Medicare Part D prescription benefit, PHA is organizing a series of informational conference calls – four for patients and four for medical centers. At all six of PHA’s regional medical education sessions in 2005, ACCESS Director, Kim Bernstein delivered a detailed and valuable insurance presentation. Kim, a long-time disability lawyer, says,

Text Box: “ACCESS and I will do anything I can to help PHA and the patients it serves. PHA is focused, keeps its eye on the goal and is committed to doing the right thing.”

In early November, PHA announced our new nationwide public relations campaign, Faces of PH. Through patient stories, we will put a human face on what has been a relatively unknown illness. Originally conceived three years ago, the campaign will now be put into effect to help build awareness of pulmonary hypertension in major media markets. Jack Stibbs, the Chair of PHA’s Board of Trustees understands the importance of this new project,

Text Box: “We are our stories. Through the Faces of PH campaign, these stories will be told to a wider audience. By putting a face on this illness, it will become real to our fellow citizens. From their understanding will come caring and help.”

As we approach the end of 2005, PHA support groups have grown in number to almost 130. This year, PHA’s electronic message system (list serv) for support group leaders expanded and has led to an increased exchange of ideas, a PHA support group logo was designed and voted on by support group leaders, monthly leader packets have been sent from the PHA office to help with information flow and programming ideas. In addition, Faces of PH and Journeys DVDs have been made available for use at support group meetings. A new DVD, Writing for Your Health was released in early November. Gail Bucci, the Support Group leader for the Sarasota, Florida area says,

In September, PHA sponsored a very special concert at the Kennedy Center in Washington, DC by Charity Sunshine, a 21 year old PH patient. She was accompanied on the piano by Dr. Condoleezza Rice. PHA’s special events continue to increase, with over 26 taking place in 2005. These ranged from golf tournaments to fun walks to garage sales. Mandy Kimbrough, who runs three Support Groups in Arizona, organized a golf tournament. She relays her experience hosting a golf tournament in this way,

PHA’s Bill to increase PH research and awareness (H.R. 3005) was re-introduced in the House of Representatives on June 21, 2005 by Congress Members Kevin Brady (TX) and Tom Lantos (CA). As of the end of October, PHA has 237 co-sponsors in the House…more than half the number of Members. Our companion Bill (S. 1774) was introduced in the Senate on September 27, 2005 by Senators Cornyn (TX) and Mikulski (MD). As of the beginning of November, it is up

to 6 co-sponsors. A campaign to increase these bi-partisan numbers, particularly in the Senate, is underway (see www.phassociation.org/advocacy or call 301-565-3004 x113 for more information). Carl Hicks, who has led three teams on Capitol Hill visits, writes,

Text Box: “I had never visited a Congressman before this year. I found that it was not difficult at all…our cause is good, our requests are reasonable. Hundreds of our members are contacting their Senators and Congressman by phone, e-mail and visits in their home districts. Working together, change is possible. We are making a difference.

Medical Services:

When PHA was founded by four patients and a family member in 1990, they immediately understood the importance of involving the medical community in the life of PHA. That decision continued to pay large dividends in 2005.

PHA’s Scientific Leadership Council (SLC) is the center around which our medical agenda is developed. In February, PHA began to support twice annual face-to-face meetings of the SLC. Its Chair, Dr. Robyn Barst of Columbia University says,

Text Box: “It may be expensive to bring together 26 physicians from 6 nations but being able to have these meetings is already making a huge difference in the work of the SLC. We are in a fight for life and these meetings increase our chances of winning.”

Also in February, the SLC renamed and began to reshape PH Clinicians and Researchers (PHCR). PHCR is a new membership structure for MDs and PhD-level researchers within PHA. Led by the Scientific Leadership Council, PHCR has two goals. First, it is designed to provide increased education to the hundreds of new doctors entering the field. Second, it provides a point for further involvement for those who are experts in the field but not currently serving on the SLC. We expect to have over 150 members in PHCR by the end of 2005. In the words of Dr. Michael McGoon of the Mayo Clinic,

Text Box: “PHCR is the first and only professional structure for pulmonary hypertension physicians. As it continues to grow and develop, I have no doubt of it’s importance as a centerpoint for our growing medical community. PHA has given us another tool to coordinate our work and make it more effective.”

PHA’s medical journal, Advances in Pulmonary Hypertension, continues to educate the medical community on a quarterly basis. It is mailed to all cardiologists, pulmonologists and rheumatologists in the U.S. and many in other nations. It is also available electronically to the PH community worldwide through the PHA website at www.phassociation.org/Medical.

Vallerie McLaughlin, M.D. of the University of Michigan, who succeeded the founding editor, Victor Tapson, M.D. of Duke University, has made it her goal during 2005 to increase the numbers of physicians involved in producing this publication. She has succeeded with editorial and editorial advisory boards receiving service from 17 leading PH physicians. Dr. McLaughlin writes:

An important benefit of the new SLC meetings is better coordination of projects being developed through various committees. For example, at its February 2005 meeting, the SLC’s Education Committee was asked to develop a CD-ROM to increase understanding of PH diagnosis among physicians. Not only did they accomplish this goal by November of this year – producing Pulmonary Hypertension: An Interactive Guide to Diagnosis – but the topic was coordinated with the third quarter issue of Advances in Pulmonary Hypertension. According to Dr. Ivan Robbins of Vanderbilt University, Chair of the SLC Education Committee,

PHA’s direct support of research also increased in 2005. Besides continuing to support our Young Researchers Grants and our NIH Partnership Grants, in April 2005 PHA launched a new partnership with the American Thoracic Society (ATS). Just as with our NIH Partnership Grants, the American Thoracic partnership assures that PHA will be able to fund the highest quality applications for new PH research. These partnerships also mean that the donations we receive to fund research are matched by NIH and ATS. For example, a $50,000 contribution from PHA to our new ATS partnership becomes $100,000 in PH research funding. The $312,000 PHA expects to be spending annually as our NIH partnership matures will leverage an annual $800,000 for this program. All administrative costs will be covered by our partners, meaning that contributions go directly to research. Dr. Lewis Rubin of the University of California at San Diego and Chair of the SLC’s Research Committee says,

Text Box: “Through partnerships with highly regarded organizations like the National Institutes of Health and the American Thoracic Society, PHA is helping to build the community of researchers focusing on this illness. PHA has now established three grant programs and they are an important part of the research effort to find answers to the many questions surrounding this disease.”

In March 2005, planning began for PHA’s Seventh International PH Conference and Scientific Sessions: Roadmap to a Cure (June 23-25 2006, Minneapolis). This event is expected to draw over 1,000 patients, family members and medical professionals. (More information at www.phassociation.org/Conference) Dr. Gregory Elliot of the University of Utah is taking lead in organizing the Scientific Sessions which will precede the Conference and draw several hundred researchers, while Dr. Ronald Oudiz of Harbor-UCLA is the primary planner of the dozens of medical sessions for patients to be delivered at the Conference. Dr. Oudiz describes the Conference experience,

As Chair of a subcommittee of the SLC’s Education Committee, Dr. Richard Channick of the University of California, San Diego led a team of PH specialists in developing Shedding Light on Pulmonary Arterial Hypertension, PHA’s new regional medical education sessions. Between September 10 and November 5, hundreds of doctors, nurses and pharmacists attended sessions providing background on PH and offering educational credits. In addition, a special dinner session was offered for patients and caregivers and was well-attended in each of the cities…New York, Chicago, Atlanta, Seattle, Dallas and Washington, DC. Reflecting on the sessions, Dr. Channick writes,

Text Box: “These sessions, utilizing medical professionals in each host region, have offered a great opportunity to reach out to physicians and patients throughout the country. The events, built on the spirit of PHA, have been very well received.”

PH Resource Network is PHA’s medical section for nurses, pharmacists, physicians assistants, respiratory therapists and other non-MD medical professionals. In January 2005, the leaders of this group approached PHA about supporting the development of a two day PH Resource Network Symposium: Learning Together, Moving Forward. Modeled on an event held in 2003 that drew 60 registrants, the Symposium was held at the end of September in Bethesda, Maryland. Three hundred medical professionals attended sessions presented by 50 speakers. PH Resource Committee co-chairs, Cathy Anderson Severson RN, BSN and Traci Housten, RN, MS report,

Unlike diabetes, cancer and heart disease, each of which impacts the lives of millions, PHA’s strength emerges not from our numbers but from the commitment of time, talent and treasure of each of our members and friends. Because each member of our community contributes of themselves in whatever way and to whatever degree they are able, we have the right to say,

“This organization is accomplishing more than anyone has a right to expect of a rare illness association.

Together, we are changing the history of this illness.”