FROM AN ACORN, A TREE GROWS: THE STORY OF PHA (U.S.)
By Rino Aldrighetti, President
In 1990, when PH patient Pat Paton and her sister, Judy Simpson, began searching for other pulmonary hypertension patients in the United States, the National Organization for Rare Diseases (NORD) had identified only 187 nationwide. PH was considered an exceedingly rare disease then, and few general practitioners or even specialists were familiar with it. There were no approved drugs for PH at that time, only palliative treatments to ease patients’ suffering. For half of them, a pulmonary hypertension diagnosis meant less than three years to live.
From the patients that NORD identified, Pat and Judy became pen pals with three other patients, Dorothy Olson, Theresa Knazik, and Shirley Brown. They were committed to ending isolation – finding other patients, educating medical professionals, and raising awareness of the disease. Theresa used her talents to create Pathlight, PHA’s long-standing patient newsletter, which the group copied at home and gave to their doctors to distribute to other patients. Soon people from all over the nation, and even some from some other countries, began to contact them and they realized they were becoming more than a support group in Florida. They quickly sought the support and involvement of doctors and scientists who had expertise in PH – the same medical professionals who became PHA’s first Scientific Advisory Board, and later, our Scientific Leadership Council. In November of 1990, the friends officially incorporated the United Patients’ Association for Pulmonary Hypertension (UPAPH).
They organized a membership program and established a telephone Helpline (now called Support Line). By 1991, they had 53 members.
With $5,000 in the bank, PHA’s leaders decided to organize a Conference in 1994. It was a financial risk, but more 100 patients, family members, and medical professionals attended. Today, PHA’s biennial International PH Conference and Scientific Sessions has become the largest PH meeting in the world; in 2008, more than 1,150 registrants from 14 nations attended.
In 1996, the Federal Drug Administration approved the first treatment for PH and doctors began to pay more attention to the disease. In 2001, two new treatments were approved and PHA believed that this would further increase medical interest in PH and that medical awareness and education would be important. Working with its Scientific Leadership Council, PHA launched the world’s first medical journal dedicated to PH. Today, Advances in Pulmonary Hypertension is sent to 41,000 doctors worldwide, including every cardiologist, pulmonologist and rheumatologist in the U.S., and any physician around the world who requests it.
PHA began to hire professional staff in 1999 and that same year began to raise money for research. By mid-2008, PHA had committed over $7,000,000 to PH research through independently reviewed programs. By partnering with respected government and medical organizations like the National Institutes of Health and the American Thoracic Society, the contributions of PHA’s donors have been multiplied in the fight against PH.
The challenge of staffing what had been a volunteer organization is to keep the spirit of the founders and early leaders. PHA does this by developing programs that involve one or more of our three constituencies – patients, family members and medical professionals. In recent years, these programs include the Media Action Network which provides tools to help patients tell their stories to local newspapers and TV stations, the 435 Campaign which organizes members to build relationships with their own Member of the U.S. Congress and PHA’s Support Group Leadership Training Institute which helps build the skills of those who lead a support group network of over 200 groups.
At PHA’s 2002 International Conference, PHA was asked by attendees from other nations to help make sure that information flows back and forth throughout the world so that we can learn from each other and advance our common cause faster. Since then PHA has taken that on as a special mission and dedicates one staff person to this role. PHA’s website – www.phassociation.org is a great help to those in the U.S. and throughout the world. With monthly visits rising to between 270,000 and 390,000 in 2008 and message boards with over 850 weekly postings, it is a resource for both knowledge and networking.
Almost twenty years later, PHA has grown to 10,000 members and has the support and friendship of an additional 36,000. Our Scientific Leadership Council, which provides leadership for all of PHA’s medical programs, is comprised of 27 internationally-renowned PH experts from six nations on four continents.
PHA is proof that all things are possible when people decide to make a difference.