Wednesday, March 20, 2013

Conference 2014: a road trip with PHA leadership...

It's coming...

PHA's 11th International PH Conference will be held June 20-22, 2014.

Last week, PHA's Conference Planning Committee met at the Conference site - the J.W. Marriott in Indianapolis, Ind. - to begin its work. Hosting a Conference for 1,500 of our closest friends is no small task ... it is a 15-month effort, this time led by Linda Carr and Rita Orth.  Linda's daughter Hannah was diagnosed at 5 and is now a married college graduate who is raising her adopted daughter.  Rita is a nurse and patient from California who has been living with PH for a number of years.

It's important for as many of PHA's leaders as possible to get to know the Conference hotel, so the Planning Committee wasn't alone last week. More than 50 PHA leaders and staff were at the Marriott for various meetings.

Looking at those meetings gives a pretty good picture of how PHA is governed and moves forward.

On Thursday, March 14, the first meetings began. PH Professional Network (PHPN) is PHA's membership group for nurses, pharmacists and other non-MD medical professionals. The PHPN executive committee members spent a good part of the day planning and discussing their upcoming Symposium - a three-day meeting that will provide education to more than 400 of their medical members. They are also active in producing web-based educational content for nurses, pharmacists and respiratory therapists on PHA Online University.

On the same day, four medical committees, who have spent the past 18 months planning different aspects of a new PHA program to accredit PH Centers of Care, held a workshop to refine their plans and discuss their thinking across committee lines.

This was followed on Friday by PHA's Scientific Leadership Council (SLC) meeting. The SLC is PHA's highest level medical leadership body. Among many other items, the SLC had the opportunity to hear and discuss the Centers of Care committee proposals. Another important discussion took place as a result of the many educational programs being delivered through PHA. The SLC arrived at some conclusions on how it can better coordinate these programs to offer greater value.

PHA's Board committees began their meetings Friday afternoon. The Conference, Strategic Planning and Governanace committees all had lively discussions in preparation for the weekend's Board of Trustees meeting. The Saturday and Sunday Board meeting covered a wide variety of issues from insurance and PHA's developing Specialty Pharmacy Review Board to the Early Diagnosis Campaign and support groups. Good discussions were held related to PHA's sustainability efforts in connection with our Chapters (New York, Midwest and San Francisco) and recently strengthened Development program. A highlight of the weekend was a visit with the Indianapolis PH Support Group which was meeting in the same hotel.

Every one of these patient, caregiver and medical leaders is a volunteer. It is a tribute to the strength of this community that so many (in these leadership groups and beyond) are doing so much to advance the fight against PH.

So, all in all, more than 50 Board members and staff did their important work ... and got to know our Conference hotel at the same time! We're ready to host PHA's 11th International PH Conference! (Well, actually, after another 15 months of exciting work!)

Tuesday, March 5, 2013

The Fifth World PH Symposium...

The Fifth World PH Symposium
Feb. 27- March 1, 2013
At 1,200, a tripling in size from fhe Fourth Symposium
We are not alone! 
February 28 was Global Rare Disease Day.  On that day, I was struck by where I was and who I was with.  PH may be rare but it is not forgotten...

Let me start with a little history.

In 1973, a handful of physicians and researchers came together in Geneva, Switzerland for a first ever meeting to discuss pulmonary hypertension.  The driving force was a small case series on elevated pulmonary artery pressures in otherwise healthy young individuals in the 1950s and 1960s; and the epidemic of anorexigenic-associated (appeite suppressant-associated) PAH in Europe.  The meeting led to an improved classification for PH and – several years later, in 1980 – the NIH began a five year registry for PH, the first in the field.  Analysis from that registry became a backbone of research for more than the next two decades.

That important meeting in Geneva, known as the World Health Organization (WHO) Conference on Primary Pulmonary Hypertension, was planned as a one-time event.  However, a quarter of a centuy later, Dr. Stuart Rich and others argued for a second meeting.  It was held in Evian, France in 1998 and established the pattern of meetings every five years…with meetings held in 2003 (Venice, Italy), 2008 (Dana Point, California) and 2013, last week (Nice, France).

Each meeting has grown.  Each has systematically strengthened how physicians and researchers across the world can work with common understanding for more rapid progress in the field.

The PHA and PHA Europe exhibits, side by side: Dr. Alma Rubio,
Pisana Ferrari (VP of PHA Europe), Gerry Fischer (President of
PHA Europe), Carl Hicks (VP of PHA), Melanie Gallant-Dewavrin
(President of HTAP France),
Hall Skaara of PHA Norway, Noriko Murakami of PHA Japan
and Yosef Gotlieb of PHA Israel are not pictured.
(Rino was behind the camera.)
The first meeting I attended was the Fourth World PH Symposium in Dana Point in 2008.  It was exciting then to see 400 physicians and researchers from around the world plan together.  Coming to Nice last week, the view was astonishing.  In five years the meeting had grown to 1,200 attendees.

It was a good feeling to hear Dr. Gerald Simmoneau open the Fifth World Symposium on the morning of February 27, speaking to the importance of the
patient associations across the world, specifically mentioning PHA and PHA Europe.

The Symposium Steering Committee was composed of five physicians from Europe and five from the U.S.   Seven of the Steering Committee members were current or past members of PHA’s Scientific Leadership Council, four having served as chairs of that body.

The work of the Symposium had been developed by twelve Task Forces:

  1. Pathology & Pathobiology
  2. Genetics & Genomic
  3. Definitions & Classifications (and particularities of different PAH subgroups)
  4. Pathophysiology (focusing on exercise and RV)
  5. Epidemiology & Registries
  6. Diagnosis & Prognosis
  7. Therapy - Standard of Care
  8. Therapy - Goals
  9. New Trials Design & New Therapies
  10. CTEPH
  11. PH due to Left Heart Diseases and Chronic Lung Diseases
  12. Pediatric PH

Over the course of three days each Task Force delivered their program, presenting the results of their work and their recommendations to the 1,200 participants.  In each case, the presentations were followed by discussion and debate. Many of the presenters asked questions and the audience used electronic response devices to vote their responses. It was a great process of involvement and the task Forces will be reviewing the audience response before finalizing their recommendations over the next several weeks.  Since this was the first time that a Pediatric Task Force was included, we are particularly interested in seeing their final report.

PHA's poster presented at the World
PH Symposium (primary author,
Dr. Sean Studer)
PHA and PHA Europe were provided with exhibit booths and it was so good to reconnect with our friends from PHA Europe as well as leaders from PHA Japan and PHA Israel.  Our International community continues to grow.  Melanie Gallant-Dewavrin, who I first met at PHA’s International Conference in 2000, told me that the HTAPFrance was founded in 1996 by Nicole Cabon after she attended PHA’s International conference in Stone Mountain, Georgia.  That was the third PH association in the world (the German PH association, PHeV, was founded shortly before).  Today there are over 60 (the Indian PH association website was just announced to the world PH community today!) 

We were pleased to have an opportunity to present our poster and study on patient depression and anxiety.  Since it came out after the European study, which PHA Europe also presented at the Symposium, we were able to include comparative data between the US and Europe in our material.
Last week was a great experience and the Fifth World PH Symposium is ended. Now we await the final reports but one thing is already very, very clear:  PH may be a rare disease but it no longer exists in a dark corner.  There is a spotlight shining on it and only good can come of that. 

Monday, March 4, 2013

Charity Navigator says...and says again

In 2003, PHA held our first PH Professional Network Symposium.  Our medical journal was one year old.  Our support group network hovered around 50 groups. And Charity Navigator, the U.S.'s most highly regarded charity evaluator, rated PHA for the first time.

A lot has happened since then but one thing has stayed the same - PHA's standing with Charity Navigator has remained the same.

Today, we received our tenth rating...and for the tenth consecutive year, it was the highest rating possible, four stars
This year year PHA was scored at 69.03 out of a possible 70 points.  Only 1% of the charities Charity Navigator rates have received 10 consecutive four star ratings. 

Take a look at this and other awards received byPHA and, if you're moved to help PHA continue to move forward, feel free to donate or join.
Thank you for all you do to to keep PHA strong in the fight against pulmonary hypertension!