World PH Day: Pieces of a Brilliant Mosaic

As I've watched it grow and evolve over the past 16 years, I've come to see it as a beautiful mosaic. The power of that beauty flows from people who unite around the common cause of fighting this disease.

First, in 1991, four women sat around a kitchen table in Florida in the United States. Their desire to ease the isolation of living with a disease that was both rare and without treatments drove them to form the first pulmonary hypertension organization in the world, the Pulmonary Hypertension Association.

In 1996, patient associations were organized in France and Germany. 

In 2000, at PHA's International PH Conference in Chicago, we realized that people from other nations had actually come. When we invited them to meet with PHA's Board of Trustees, seven people joined us to begin a conversation that has never stopped. By 2001, PHA-UK and PHA Israel had formed.

When we had a more intentional meeting at our 2002 International Conference, 80 people came. When we asked them what they wanted from us, the message was clear.: PHA has been around longer. Help us to learn. Help us to build.

More national organizations were formed, and by the 2004 Conference, we had staffed a position to help increase communication and collaboration among the patient organizations. We also shared a simple principle that has been adopted by all PH associations: to succeed, we have to stand together – not just patients, not just caregivers, not just researchers, not just medical professionals... but ALL of us.

So now, as we prepare for PHA's 2014 International PH Conference, it remains the same. It has always been equal parts patients, family members and medical professionals. It has always been and will always be homecoming for the PH community

It has also become something more. It is the International Conference and Scientific Sessions. It is the International Conference and Global Leaders Symposium. More than 30 nations are expected to have a presence.

They are part of a global movement that today includes 68 national PH associations.

When our friends in Spain proposed World PH Day three years ago, we were glad to help. Since the Second World PH Day last year, we created and have managed a website for all the associations to share and coordinate activities.

We are also often invited to participate in other World PH Day activities.

This year Julia, who coordinates our international activities, and I were the guests of the Saudi Association for Pulmonary Hypertension. We boarded the plane on April 29 for a 13-hour flight to Muscat, Oman. For seven years, this group of physicians has led the Joint Pulmonary Hypertension Association Assembly of the Eastern Mediterranean Region. As she has with other national organizations, Julia has worked with PHA staff to make our patient and other materials available for translation by SAPH. Last year, she helped organize a call between U.S. and Saudi patients. 

Our visit was a great opportunity for us to meet physicians from throughout the Middle East and share information and discuss possible partnerships. One important conversation is likely to lead to a patient component for the next conference. When we helped Dr. Nick Hill organize a patients component for his medical Symposium at Tufts in Boston more than 10 years ago, we saw that concept spread rapidly to other PH meetings throughout the U.S.  Today it is the rule, not the exception. Our hope is that if Dr. Majdy Idrees and his SAPH leadership group are successful, the concept will spread throughout the region.

After three days on the ground in Muscat, Oman (a beautiful city by the Indian Ocean), it was time to hit the airport. Julia headed back to Washington, D.C., and I headed to a different gate for a nine-hour flight to Beijing, China. (I'm writing this as I wait for a lift to the airport for my trip home.)

ISEEK, the patients’ group in China has been working hard to meet needs in their nation. I had been invited to come to their first Conference. They had brought together more than 150 patients, family members and doctors with government officials to discuss the importance of creating drug availability for PH patients. I was brought in to discuss the multi-part U.S. insurance system (private insurance, Medicare, Medicaid, the Affordable Care Act, pharmaceutical support programs and so on). While there, I had a chance to renew acquaintances with Dr. Cheng, who I had met seven years ago during my last trip. Huan Huang, a young woman who was transplanted two years ago and is now the Director at ISEEK, presented on patient depression issues. It was striking to see the similarities and differences from our own and PHA Europe's depression and anxiety study to this Chinese study.

Following the meeting, about 30 doctors held an open meeting, with press attending, where they discussed positive ways to achieve the same thing every patient group in the world is after: a better life for patients as we continue the march toward a cure. It was good to see the doctors and patient leaders working so well together.

I spent most of the next day with the ISEEK staff. Their executive director, Rong Li, formerly a filmmaker, has built the organization quickly in a country now beginning to accept the value of nonprofits. They remind me so much of PHA's days of early staff history. They have moved four times in the past three years of their existence. Their staff has grown to six. They hire for the same values we do: bright people with commitment to cause and an ability to work well in teams. And they have a refusal to fail.

While Julia and I were traveling, Briana was in Medellin, Colombia, where PHA had been invited to present at the Sociedad Latina de Hipertensión Pulmonar (Latin Society of PH) – an umbrella organization similar in structure to PHA Europe. Briana's report will come in a future guest blog.

So, as I wait for my ride to Beijing airport for the long ride home, I continue to catch up with the regular daily and sometimes hourly updates about PHA's World PH Day project, which has generated celebrity interest on Twitter and continues to expand TV and radio play for our public service announcements.

Every day another piece of the mosaic falls into place. Every day we move another step closer to our goal.

It was wonderful to spend time with this enthusiastic and inquisitive group. I know we will hear a lot from them in coming years.