The CA PH Forum - June 25 - 26, 2005 - was a great success. Over two hundred people attended which included: patients, caregivers, friends, family, medical professionals and representatives from major PAH pharmaceutical and distribution companies. Everyone came to hear the latest news from some of the top PAH specialists in the country and to meet and mingle.

Because there were no recordings made of the talks themselves, we will try to give you the flavor of the gathering and relay a little of what was discussed. Some of the speakers have made their slide presentations or handouts available to us. You will find a list of forum resources here.

The Embassy Suites, where the forum has been held twice, is easily accessible from the airport and there is plenty of parking for the locals too. The atrium is tropical and spacious with trees, natural sunlight, small bridges over koi ponds and plenty of places to sit, visit or just relax.

Our meetings began in the large ballroom which had been set up to accommodate everyone; the room would later be divided to accommodate two groups. It was crowded but comfortably so. There was plenty of room for everyone.

The major drawback to Flolan, as anyone who has lived with the pump and the Hickman line will tell you, is that it is cumbersome. The drug is delivered through intravenous infusion by a line surgically implanted in the upper chest. Flolan patients must learn to mix their own medications, carry a pump that delivers the meds 24/7, and may experience numerous side-effects from this strong vasodilator. Even with all of these drawbacks, Flolan is the gold standard and often the therapy of choice for many patients who are diagnosed in an advanced stage of PAH.

Dr. Doyle went on to discuss the drugs that have been approved for PAH subsequent to 1995, and explain how they work either as a vasodilator or endothelin receptor antagonist. The drugs she discussed are: Remodulin (treprostinil sodium) delivered by subcutaneous infusion, Tracleer (Bosentan) delivered orally, Ventavis (Inhaled Iloprost) delivered via special nebulizer and Revatio (Sildenafil) delivered orally.

The next speaker to address the assembly was Dr. Shelly Shapiro from the University of Southern California Medical Center. Dr. Shapiro gave us PAH from a cardiologist's point of view by showing us schematics of the heart while discussing the heart-lung relationship.

Dr. Shapiro described the changes that take place in the pulmonary artery and vascular bed, the cardiologist's view of the heart and lungs, what occurs at the hemodynamics level and what happens to the right side of the heart of a PAH patient. She also explains when and why one should get a right heart cath, the role of echocardiography, how right heart failure is treated and a great deal more.

Review Dr. Shapiro's Power Point Presentation.

Dr. Roham Zamanian, a research fellow at Stanford University Medical Center, talked about current and possible future research with much enthusiasm. Currently, scientists are studying the roles that certain genes and gene mutations play in the development of PAH. Researchers think PAH may develop in certain people with specific risk factors in combination with environmental factors.

To help with this research, Dr. Zamanian asked for us all to give blood during the forum. He and several nurses manned the blood draw table throughout the day.

In other studies, Simvastatin - often prescribed as a cholesterol reducing drug - has been shown to be helpful in animal models, but he warned us that they are a long way from confirming positive benefits in humans.

Future studies will include genetic serotonin, elastase inhibitors and stem cells. A better understanding of individual factors that contribute to the development of PAH may lead to development of new therapies, in the same way that their understanding of the role of endothelin in constricting blood vessels led them to develop endothelin receptor antagonists such as Tracleer.

Before we adjourned as a group to have lunch and begin the breakout sessions, we heard from Mr. Carl Hicks who has a daughter with PAH and who is now traveling to Wash. D.C. to lobby for a new bill co-authored by Rep. Tom Lantos (D) California and Tom Brady (R) Texas. The Pulmonary Hypertension Research Act authorizes $250 million over the next 5 years for NIH Research. As you might have read recently, Rep. Lantos has a granddaughter with PAH! Mr. Hicks urged us all to get involved by calling and writing our Senators and Representatives about this important piece of legislation.

The doctors who addressed our entire assembly - all top specialists in the field - were clearly excited about the explosion of interest and research taking place today. Although the topics were sobering - heart failure, management of symptoms, no cure...yet - the presentations were informative and uplifting.

After a tasty lunch with PAH friends, it was time to make some tough choices. There were three breakout sessions in three separate rooms going forward. Which to choose?

For example, many of us have been told to limit salt intake, but by how much? Ms. Traiger Gave us practical guidelines that are rarely discussed by our PAH doctors. You'll find Ms. Traiger's slide show presentation - her handout - along with some comments here.

Things are changing quickly in the world of PAH

The second half of this session on alternative medicine was presented by Francisca McCartney, PhD, on the healing effects of meditation. Ms. McCartney explained how we can access and direct our own healing energies.

Both speakers feel that the individual can and should play an active role in nurturing wellness in our own bodies.

Dr. Charles Hoopes, of the UCSF Transplant Team, reassured many of us who might have to consider that route someday by pointing out positive statistics for PAH patients undergoing lung transplant these days. Further encouragement was given by Carrie Shellhammer and Collette Nichols, each of whom is a very successful transplant recipient.

Dr. Richard Channick, University of San Diego Medical Center, addressed the entire assembly on Sunday morning. He spoke on issues relating to the FDA approved therapies and took questions from the audience.

Jay Watson, PharmD from United Therapeutics, and Dr. Morris Cheeks of Encysive, gave a special presentation just for medical professionals on the current and future use of prostacyclins and ERAs. It is amazing to see the new therapies that are being developed each year we meet like this.

Finally, patients and caregivers divided into separate support groups so they could speak more candidly about their personal experience with PAH. The passion with which they share their stories, and encourage others like themselves, makes us feel that it is well worth the time and effort that went into planning this conference.

Click here for a complete list of sessions.

When it was over, it felt like a whirlwind had picked us up and dropped us back down. Everyone said is was a great event, but exhausting.

This event is planned and executed by a small group of people, most of them PAH patients. We met often for working luncheons and bit by bit, the event came together.

If you would like to receive information and guidance about planning a similar event in your region of the country (or your part of the world), we would be glad to share what we can with you. Within the next few months, we should have a forum package put together to help us with the next event and to offer anyone with an interest in learning more.

We think the CA PH Forum 2007 will be a great, well attended event. We hope to see you there!