Monday, March 21, 2011

More from PHA Norway...

PHA Norway from PHAssociation on Vimeo.

On March 14, in a blog titled, "Honoring his father...", I mentioned Hall Skara's mountain-climbing video which he presented at our June 2010 International Conference.  Today, Kathy Frix finished converting that video and you can find it on our International Faces of PH page or by clicking the video on this blog.

I thought you'd like to see this...and the other rich content on PHA's international web pages.

Thursday, March 17, 2011


Our hearts go out to all those involved in Japan's unimaginable disaster...particularly our friends at PHA Japan.

I met Noriko Murakami, PHA Japan's founder in 2000 at PHA's International Conference in Chicago. As she tells in her story of the organization's formation, that was shortly after they had formed.

It was also shortly before I had an extraordinary visit to Japan.

Ten years and one month ago - in February 2001 - I represented National Voluntary Organizations Acive in Disaster (NVOAD) on a 12 day speaking tour of Japan, concluding in Sendai.

That tour was my lsat piece of consulting work before converting from a part-time exeuctive director at PHA to full-time ED and, later, president.

Over the past few days, as I have watched the devastation on television, I have been thinking a lot about that trip and the wonderful people I met.    While I was working as a consultant ED for PHA, I was also in the same position for NVOAD, an umbrella organization for the major non-profit disaster response organizations in the U.S.  The group was built on the simple idea that the best time for disaster responders to meet and plan is before the next disaster strikes.

Well, that's the background.  The story is a diary I kept during that trip and later posted on the NVOAD website (webmaster was among my duties there).  It's been long down but Kathy Frix at PHA revived it for me.  If you do want to take a look, my experience at the podium in Sendai may be worth a quick read.

Tomohide Atsumi organized NVNAD after the 1995 Kobe earthquake.  He once told me that up until that event, the expectation in Japan had been that government would come in and solve the problem...but the Kobe disaster was too big.  His role and that of others has become to introduce the concept and practice of volunteerism into the culture.  To the extent that they have succeeded, the country will benefit as they move through this yet unfolding tragedy.

Dr. Atsumi, a professor at Osaka University, returned to Japan from his position as a Fulbright Visiting Scholar at UCLA the day after the earthquake struck.

On Monday, he sent out a long situation report.  It closed with the following...
At this phase of disaster, and being in the area, it is hard to think of any "academic" issues unless they are truly practical. It is, at least, obvious that we should re-examine our concepts of society, culture, civilization, safety, sciences, and meaning of life. I hope that you input us any/many ideas to think for (future) academic contributions from various areas of the world.
Let me go now. I have to go to the office and respond. Today, I will discuss when/how/whether/where to dispatch our team (including me), develop programs for volunteers now and in long-term, reply to many supportive messages from people in Japan, and talk at two TV programs and one radio program...

Thank you for your attention.
Good luck Tomo.  Good luck Japan.

Tuesday, March 15, 2011

A new step forward in pediatric medical education...and a growing concern

Last week, I wrote that Caitlin Flewellen on our Medical Services staff and I would be going to San Francisco for the Fourth International Neonatal and Childhood Pulmonary Vascular Disease Conference.

I had attended last year's meeting in Banff and was impressed at how much of the programming focused on pediatric PAH.  It struck me then that  the pediatric field was progressing rapidly, much as the broader PAH field was developing two decades ago.

As we thought about how we could help with this acceleration, the idea of filming those sessions where speakers were agreeable and posting them with educational credit on PHA Online University emerged.

Thanks to the active support of Dr. Jeffrey Fineman, Conference organizer, Matt Trojnar and PHA SLC members, PAH pediatricians Dunbar Ivy and Erka Berman Rosenzweig, we were able to work out an agreement and get word out to the 31 speakers.  We were also able to work out an arrangement with the University of California at San Francisco to make it financially feasible to re-purpose the talks for educational credit.

We contracted with Fleetwood the same company that did such a great job filming sessions at the PHA International Conference last June.  I love their presentation tool which syncs slides and speaker video.  Here's a sample from Conference.

By the time we had made these arrangements, we were within a week or so of the Conference start.  Our e-mails to the speakers generated 11 positive responses.  So, we went to the Conference with some nervousness.

Caitlin was invited to sit at the registration desk and connected with speakers as they arrived.  By the time she was done, speakers agreed to be filmed in 28 of the 31 sessions!

We believe this success, besides making a great deal of pediatric medical education available online and publicizing the value of this Conference, will be groundbreaking as a model for the filming of other valuable events.

Because we have given the physicians review rights on their filmings and because we have to go through CME review, the presentations won't appear immediately but we're hoping to have them up within four months.

As a cautionary aside, one disturbing factor in this march toward the development of pediatric medical education is a new FDA rule which requires that pharmaceutical industry support can only be provided for pediatric medical education if the supporting company has an approved indication for the pediatric use of their product.  In the case of PH (and we are not alone, given the FDA's caution in allowing pediatric trials), all approved drugs are being used off-label for children. 

So a question must be asked of the FDA... 

If the pharmaceutical industry is being regulated out of providing support and we already know that neither government nor academia are willing or able to provide such support, are physicians to be condemned to restricted knowledge in the name of purity?

As this Conference's funding is being threatened, PHA has offered to do our best to help but the problem is a rapidly growing one and our own resources are limited.

We will do our best to help and fulfill our mission in the face of a regulatory system that is more and more ignoring the (unanticipated and damaging) consequences of its actions.

We are simple people, trying to do a simple thing...and I'm convinced it is the right thing.

Monday, March 14, 2011

Honoring his father...

PHA Norway President, Hall Skåra sent us this video earlier today.  Those of you who were at PHA's 2010 International Conference may have met Hall and his family or remember his great mountain-climbing story from one of our plenary sessions.
Hall's son, Nils-Paul (a former guard at William and Mary in Virginia) is now back home, continuing to play basketball and using his talents to help build PH awareness in Europe.

As you'll see from the video, Nils- Paul's whole team Baerum Basket played a key game (they won!) with Blue Lips as part of PHA Europe's effort to mark Rare Disease Day and to honor Nils-Paul's father.

They created a lot of publicity about the event in pre-game newspaper ads, local articles and an appearance on national TV. Now that they’ve just made it to the semi-finals, there should be even more interest!

It's a great story.  Many thanks to our friends in Norway for subtitling the video in English (and to Bayer for helping PHA Norway get it made) and sharing it with us here in the U.S.

Oh, and for those who'd like to learn a little more about PHA Norway and hear Hall's thinking on developing patient education as an empowerment tool, you can see and listen to his presentation at our International Leaders Symposium this past June.

Wednesday, March 9, 2011

Leadership meetings...

Last Wednesday, I flew to Orlando, Florida for a meeting marathon.

Twice each year PHA's Board of Trustees meets face-to-face.  Often, because there are connections between our board, Scientific Leadership Council and PH Resource Network Executive Committee we hold these meetings in sequence.  It's a lot of work but builds connections across PHA's various leadership structures and saves on travel costs.

All three meetings (plus a few committee meetings) were held in sequence this time for a special reason.  Our meeting site was also a test of the site for our 2012 International PH Conference and Scientific Sessions (June 22-24, 2012).  The Renaissance Orlando at Sea World looks like it will be a great host for our community.

The PH Resource Network was the first of the meetings, held all day on Thursday. A big part of that conversation was the 2011 PH Resource Network Symposium which will include almost 30 sessions for allied health professionals.  Another important discussion was held around the group's rapid growth.  PH Resource Network is a professional association within PHA for allied health professionals.  With over 900 members they have grown to include many specialties (pharmacists, respiratory therapists, physicians assistants, nurse practitioners, and so on) beyond the RNs who were the original members.  Building programs and a welcoming environment within the group's umbrella is becoming increasingly important.

On Friday, PHA's Scientific Leadership council met for a rich and full day.  Their focus was a review of our current research programs, our medical education programs and providing more valuable information for patients and their families in how to work with their medical professionals.

The PHA Board met on Saturday and Sunday, discussing our goals for the year and much of our organization's wide-ranging programming.  An interesting aspect of the Board is that it interlocks all components of PHA for better and broadly viewed decision making.  Patients and family members participate with physicans from the SLC and allied health professionals from PH Resource Network.

The board was able to meet with members of the Orlando support group and a dozen support group leaders from around the state.  Fifty-two support group members attended.  There is no question they will be great hosts for our Tenth International PH will Dr. James Tarver and his great team at the Orlando Medical Center.  Dr. Tarver attended the board meeting with his nuse practioner (and PH Resource Network executive committee member, Melisa Wilson.

The entire board was very excited about the meeting possibilites we saw in the hotel.  It will be great to come back to the state in which PHA was founded for our 2012 Conference.

I'd like to write a lot more but I have an early flight to San Francisco tomorrow for the Fourth International Neonatal & Childhood Pulmonary Vascular Disease Conference.  PHA will be filming many of the sessions to provide pediatric medical education on PHA's Online University website.

We do keep moving...