Awareness Month…planes and trains and other things

Zebra in the Fresno crowd

PH Awareness Month...  

It’s a footrace – an important footrace – with a lot of zig zag.  To explain, I’m using this blog to fill out what I wrote in earlier blogs and talk a bit about what I saw and did as I traveled for PHA just before and during this important time for building PH Awareness.

Personally, Awareness Month is also a time to feel the pulse of our community and better understand the effectiveness of current programs and future directions.

When I first came to PHA in 1999, there was little time or financial ability to travel but I was struck by the Awareness Week (that’s what it was then) pioneers who were tabling at several hospitals around the country.  They were the backbone upon which we built the great Awareness Month activity we are seeing today. 

As always, my November Awareness Month travels began in late October.  On the 23^rd of the month I made my first stop in Denver to attend the induction of Dr. David Badesch into the Colorado Pulmonary Hall of Fame.  Dr. Badesch is one of the great clinicians and researchers in the field and a friend who helped build medical side of PHA’s work.  It was wonderful to see him receive this great honor.

After less than 24 hours in Denver I went on to Fresno, California.  Many months earlier, I had promised Dr. Vijay Balasubramanian, Director of the PH program at UCSF Fresno, and Perry Mamagonian, the very active Fresno support group leader that I would be there.  The night before the event, On October 24^th, I had dinner with Dr. Bala as he is called and several administrators and staff at his hospital.  He said to me, “You know, we have worked hard to build a strong PH program here in Fresno.  When I looked at PHA’s PH Care Centers accreditation guidelines, I saw that we had everything needed…except a nurse coordinator.  I went to my hospital administrators and told them that I believed the accreditation program is important and asked their help.”  What he said next was striking in realizing how the new PHCC program is already improving quality of care for patients.  “My administrators supported me. Meet my new nurse coordinator.  She started last week.”  He went on to describe how his nurse coordinator was already tapping into connections with other nurse coordinators from PHA’s PH Professional Network (PHPN) for mentoring.  Knowing all the work that has gone into building the PHCC accreditation program, it was striking to see how it is already beginning to impact practice for the good of patients.

 On Saturday October 25^th, I attended the Fresno Annual Fun Walk.  I was impressed at how many people came and reminded how important it was to have a PHA presence at such events.  I truly wish we had the opportunity to attend all these great events…but with an annual calendar that includes 90 special events, 60 PHA medical education meetings, 15 Building Medical Education in PH meetings, 4 regional patients conferences and quite a bit more, that has become sadly impossible. We have grown to have one PHA meeting almost every two days.  All are important in our quest to change the history of this disease…whether or not we are staffed to attend.

Later in October 25^th, I flew to Austin, Texas for the annual conference of the American College of CHEST Physicians.  PHA attends conferences like this where we exhibit and connect with medical professionals, develop alliances and host our own committee meetings.  CHEST is always a good opportunity for all these things. In the Austin airport I saw the banner to the right.

After several days back at the office, I attended the Baltimore Zoo Walk on Sunday, November 2. Later in the day, I traveled to San Francisco for two days of meetings with our corporate partners at Actelion and Gilead.  It is an opportunity to let them know how we have used their financial support during the past year and where the organization is heading in the next.  At Actelion, I had the opportunity to speak to their staff at their Awareness Month Kickoff Luncheon.

On to New York City on Nov. 6 for two events.  First, a visit to NASDAQ where our PSA's played on the NASDAQ stock exchange screen (the largest screen in the world!). Then on to our New York Chapter Gala.  It was a terrific event honoring Dr. Evelyn Horn as a pioneer in PH and her patient, singer Chloe Temtchine and Shad Azimi.  Jeffrey Hayzlett, host of Bloomberg TV’s C Suite was a great MC.

After the New York Gala, I headed to Syracuse for the Sarah Smiles event, held at the Camillus, NY Fire Department.  It’s an event I had been hoping to get to for several years.  I had met Sarah Peek and her parents Michelle and David and little brother Nathan in 2009 at the Long Island Support Group Fun Walk.  Sarah was a lovely 6 year old whose spirit

really struck me…and whose loss in 2010 was deeply saddening.  It was great to see Michelle and David again at this annual fund and friend-raising tribute to Sarah – and to meet Sarah’s grandma, Bonnie Corey, who I’d previously spoken to by phone.

From Syracuse I headed back to the office for four days of 2015 budget sessions.  Twenty-two budget presentation meetings were held on Monday, Tuesday, Wednesday and Friday during the week of November 10.  Thursday was reserved for PHA’s Annual Congressional Luncheon.  This was a well-attended event which included encouragement from Sen. Bob Casey of Pennsylvania and NHLBI Director Dr. Gary Gibbons and Congressional office visits by the many patients, family members and medical professionals who attended.  Before the event, many of PHA’s members called their Members of Congress requesting that they or someone from their office attend the luncheon and saying that they would call back to hear how it went.  As always, our community’s efforts at the local level really helped build Congressional interest and attendance and our clout at the national level.

Shortly after the last budget meeting at 4pm on Friday November 14, I headed back to the airport for a late flight.  This time it was a little different.  I got to spend the weekend with my daughter and son-in-law in Germany before continuing on to Paris to meet with leaders of European PH Associations (including France, Germany, Italy, Hungary, Norway and the United Kingdom).  As the number of PH associations continues to expand globally, meetings like this help to us all to collaborate better and find ways to build programs of value to our communities.  While I was in Europe, PHA launched the first CTEPH Awareness Day as part of PH Awareness Month with great participation.  It was exciting to see that our European partners were already aware of and excited about tis new effort.

Following the European meetings, I flew to Chicago for PHA’s Midwest Chapter Hearts Phor Hope Gala on November 22.  I particularly wanted to be there to acknowledge Dr. Stuart Rich who was receiving an award for his career-long and ground-breaking work as one of the founders of the field of pulmonary hypertension.

The next morning, I flew home for more budget work and a very quiet and restful Thanksgiving!

There is so much that I saw during Awareness Month 2014…and much more that I could not see. 

PHA is based on the principle that a strong community can change our world for the better. 

Awareness Month is one important and vibrant proof of that principle.

From Orlando to Istanbul…

At PHA’s 2012 International PH Conference and Scientific Sessions in Orlando, Fla., one of our medical speakers during the Scientific Sessions was Dr. Ghazwan Butrous, a Professor of Cardiopulmonary Sciences at the University of Kent in the United Kingdom. His presentation on schistosomiasis, an infection (caused by parasitic worms in contaminated water) that is a primary cause of pulmonary hypertension in South America, Asia and Africa, is now available on PHA Online University and is well worth watching.

We have known Dr. Butrous since, as a scientist at Pfizer, he played a critical role in demonstrating the value of sildenafil for treatment of pulmonary hypertension. Today, he plays another important role as Managing Director of the Pulmonary Vascular Research Institute (PVRI), an organization of physicians with whom PHA has been developing an increasing number of partnerships.

Grand Bazaar

There are many connections between PHA and PVRI, and at the end of 2012 I got a call from Drs. Stuart Rich and John Newman. Dr. Rich is a past member of PHA’s Scientific Leadership Council (SLC) and co-founder of PVRI, and Dr. Newman is immediate past chair of PHA’s SLC and active in PVRI. They invited me to attend PVRI’s annual meeting in Istanbul to address the group on what patients want from medical research and to discuss a potential clinical trials initiative.

When I heard the question – what do patients want from medical research, I was really pleased. Here were Dr. Rich and Dr. Newman, researchers who played important roles in building this field, asking a question we had rarely heard before.

Hagia Sophia

I accepted and began developed a survey. Once it was ready and posted online, Kim Lamon-Loperfido, who manages PHA’s Patient Outreach and Services, circulated a single Facebook message to let our community know it was available. Twelve hours later I checked to see if anyone was interested. To my astonishment, 143 people had already completed the survey … and within 72 hours we had met our goal of 250 respondents. This was no small statement of interest since we estimated completion would take 35 to 45 minutes. 

Michael Gray and Briana Rivas-Morello in our Medical Services program volunteered to analyze the data and developed a detailed report and slide deck which I was able to present on Tuesday, Jan. 22, in Istanbul to the almost 200 physicians and researchers from around the globe who attended.

Topkapi Palace

The presentation was part of a symposium on the possible development of a global clinical trials consortium. Besides my presentation from the perspective of patient advocacy groups, Drs. Rich and Newman chaired sessions that included perspectives from academia, industry and government.

PHA’s presentation was well received, and we have already received considerable interest in more information from many who attended. Our next step will be to share the information with PHA’s Scientific Leadership Council so that one or more researchers can be encouraged to expand and refine it for publication. At that point, we look forward to sharing the information with those who participated in the survey, the rest of our PH community and researchers in other fields who are finding this topic of growing interest.

One thing that is already crystal clear from the survey is that patients want more information than they are getting from the research in which they are participating – and those who are not participating could be encouraged to do so with more information.

Dr. Al- Hazmi bringing the
Sometimes It's PH Campaign
zebra stripes to Istanbul

At PHA we will begin working on this and, as our information is reviewed and further developed, you will be hearing more about it.

I cannot write this without saying that Istanbul – with its long and historic blending of East and West – was a perfect place to host this global meeting. The meeting was hosted by the Saudi Association for Pulmonary Hypertension and at an evening event, I pointed out to Dr. Manal Al-Hazmi from Riyadh, Saudi Arabia, that her blouse looked like zebra stripes. She replied, “Of course, that’s why I chose it … to support the early diagnosis campaign and bring awareness to Istanbul!”

There is no question that we are all in this fight together.

A 20 year anniversary...

Earlier today, Amanda Butts was digging into our archives and found information about PHA’s original non-profit incorporation. What was striking was the date of that incorporation – February 11, 1992 – almost exactly 20 years ago.


A lot has happened in two decades…

PHA was known as United Patient Association for Pulmonary Hypertension (UPAPH) then. At the annual meeting in January of 1992, with ten people present and $858.31 in the bank, Ed Simpson proposed that PHA organize an International Pulmonary Hypertension Conference. And, organize they did, with the first PH Conference being held in 1994.

Taking place every two years since, PHA’s Tenth International Conference will be coming up this June in Orlando, Florida. Thanks to the willingness of these early patient and caregiver leaders to risk and work to create something extraordinary, these have become the largest PH meetings in the world drawing attendance from up to 20 countries.

In July of 1992, Stuart Rich, MD, Elizabeth Kaufmann, RN and Paul Levy, ScD published a key paper on calcium channel blockers in the New England Journal of Medicine. Today, the research field for PH has swelled as a unusually cooperative and productive body with the results that there are now nine treatments for PH (all since 1996, eight since 2001).

The minutes of the 1992 UPAPH meeting report on the intent to create a Scientific Advisory Board and the compiling of regional lists of doctors with interest in PH. Well, they certainly got that done. With what has become a globally recognized Scientific Leadership Council and two medical associations within PHA (one for physicians, the other for allied health professionals), not only are medical professionals listed but they are working actively with each other on many important projects…from face to face medical education, online education, research and journals to webinars for patients, knowledge videos and the creation and approval of new informational pieces for our entire community (too many possible links for that one!).

At the same time, the early leaders decided to create information packets for patients and new members. That was the seed that led to the dozens of brochures and booklets and thousands of pages of online information now being offered, including information for new patients.

The two support groups they started 1992 with have now grown to well over 230…and the 141 UPAPH members then are over 13,500 PHA members now.

Oh, and the database they authorized at that meeting has now grown to 70,000 people who are – members or not – interested in this disease and are potential connections for change.

So this seems like a blog that’s more about the details than the personalities…but I don’t think so.

To me, the numbers tell the story of possibilities – possibilities transformed to reality by people who refuse to accept impossibility.

All of us who are concerned about changing the history of this disease are indebted to the pioneers who created focus and direction 20 years ago. We build on what they began.