National Journal today...

A few weeks ago Donna Pederson, a 24 year old PH patient and nurse, PHA's good friend Congressman Kevin Brady and I agreed to a video interview with the National Journal.  Their video publications are available to all Capitol Hill offices (and heavily trafficked by them), as well as to other subscribers.

I thought they did a pretty good job with the exception of reporting patient survivability at 2.8 years for 50% of patients. That number is true for patients not on medication. With 9 treatments availble - 8 since 2001 - survivability continues to improve.

At any rate, here's the video.  See what you think.

Time to move...again

On February 16, I posted that construction permits went up for PHA's 6th move in 11 years.

Well it's time.

Last weekend the cubicle walls came down and were moved to our new space on the 10th floor.  This week, as you can see from the pictures on our 4th and 5th floor, it's been kind of like a sweatshop here at PHA.  Starting tomorrow and continuing on Saturday, our computers and phones will make the move and our staff should be reunified on a single, functioning floor on Monday.

Wish us luck!

Candid Reflections on Lung Transplantation...

Exactly a week ago, PHA had the opportunity to deliver a Lunch Symposium at the International Society for Heart and Lung Transplantation.

As a high level sponsor of the ISHLT Conference, Gilead Sciences had the right to this block of time but decided a PHA presentation would be more appropriate.  They covered the costs for the lunch event and we accepted and developed the content.

I opened with a slide presentation titled Blending the Patient and Medical Communities: The Pulmonary Hypertension Association Model. Truth be told, it was really more about it's subtitle,,,Heroes.  I told brief stories about individuals like Bonnie Dukart, Diorothy Olson and Barbara Smith, people who by their actions made a difference and built this organization.

Following that, we presented a video PHA developed in 2005, featuring stories of patients experiences pre and post transplant.  I hadn't seen it myself in quite awhile and found it quite moving.  One of the doctors who saw it suggested it would have value as a training tool for medical professionals coming into the field.  I think we'll explore that possibility.

We were fortunate to have Dr. Reda Girgis of Johns Hopkins conclude the program with a presentation on Challenges in Lung Transplantation for PAH.  He educated the audience on a number of transplant issues specific to PH patients.

It was a goos session and a great chance to introduce the work we are doing to the transplant community.

ISHLT..two surprises.

I spent most of last week at the International Society of Heart and Lung Transplant meeting in Chicago.

Their staff did an amazing job navigating around an unexpected problem.  The eruption under the Eyjafjallajokull glacier in Iceland made it impossible for over 500 European registrants to attend...and many of those were speakers.  With 48 hours notice, most of the speakers were able to present their slides remotely and well.  It was an amazing achievement and one I hope we'll never have to match ourselves to at a PHA Conference.

A second surprise was much more pleasant.  In an organization that historically has had little PH education, avery high percentage of content was focused on the disease.  As a matter of fact, the Conference had a full day symposium on PH last Wednesday.

This explosion of PH information is due to the hard work of many of the physicians we work with at PHA.  Two years ago, they formed a new PH Council within ISHLT and drew large attendance to strong PH sessions at last year's Conference in France. 

Christa from our Med Services staff and I attended this year's Council meeting.  The outgoing Chair, Dr. Ray Benza and incoming Chair, Dr. Myung Park led a dynamic discussion of their next steps in keeping PH as a topic of value and importance to the ISHLT membership.

PHA's next step is currently being worked out.  We have offered to support the PH Council's educational process within ISHLT by mailing the next issue of our medical journal to all ISHLT members. Its topic is Transplant.  We'll be sending the ISHLT board a review copy in the next week or so.  Dr. Debbie Levine, Dr. Myung Park, and Dr. Ray Benza, all Council members, have worked on the issue...with Dr. Levine being the primary editor. 

I feel fortunate to have been able to attend the ISHLT meeting.  It was another important element in the fight against PH and another chance to see how the interconnectedness of our community can drive positive change for the good of all. 

...And, while that's a pleasure, I'm pleased to say it is no longer a surprise.

And that's how awareness grows...

PHA hosts over 20 message boards and lists servs.  Many support the work of various committees, while others are active sources of broad communications for various segments of our community.

Lately, there's been a lot of buzz on the support group list servs about two pieces of video involving support group leaders.

Ellen Harris, a support group leader from Northern Virginia, is featured on a PH segment on the PBS show, Healthy Bodies, Healthy Minds (scroll down to episode 1506).  North Carolina support group leader Doug Taylor reported that WTVI in Charlotte, NC also had a recent program on PAH. (Once on the page use the arrow at the bottom to scroll down to the Pulmonary Hypertension show). Host Joey Popp interviewed cardiologist Theodore Frank, MD, and pulmonologist Doug Kelling, MD as well as local PH patients (and twins) Linda Miles and Brenda McCallum.

Then there's the continuing coverage of the Kilimanjaro Climb which has generated over two million readers and viewers across more than 70 articles and features.  I'm sure you'll enjoy one of the most recent from WQED in Pittsburgh.

While the PH community may not be large compared to other diseases, our drive to get our story out is creating awareness and opportunities beyond our numbers.

I hope you'll take a moment to find ways to get involved through the Awareness pages on the PHA website. It can make all the difference.

Beyond expectations...and yet

On October 9, I posted a blog titled, Keeping our values straight.  It was about the launch of our scholarship efforts for PHA's 2010 International PH Conference and why this event is so important for patients and their families..

Yesterday, we had our monthly Executive Committee call with leaders of the PHA Board. 

Patty, our Finance Director reported that our Scholarship Fund has grown to $219,305.  To understand what this means, you have to think about the number of PH patients in the U.S. in proportion to diabetes (23.6 million), asthma (16.4 million), Bi-polar disorder (5.7 million), Alzheimers (5.3 million) or many others.  Campare these numbers to the 20,000 to 30,000 diagnosed PH patients in the U.S.  Our numbers are small and so our climb to make the changes we need and want on any issue is steep.  It is a climb that involves everyone's best efforts...and, in that, this community has never disappointed.

That our community is able to provide this kind of support for patient scholarships - to what has been described by many who attend as a life-changing event - says a lot about the PH community's values.

We're proud of the scholarship program.  There's no question it's hard work to raise these funds but it's so worthwhile.  My only regret is that, even at this extraordinary level of support, there are still many patients who have to be declined for scholarships.  My dream is that, someday, we will be able to endow this program at a level high enough to guarantee that we can fully meet the need and turn away no patient who wants to come..

Kind words spotlighting PHA chats...

It's always nice to receive kind words  Last week, Chris Akins sent those and also put a spotlight on PHA's chats.  I thought I'd share his note with you...

I wanted to personally thank you for the PHAssociation and the online chat that you provide. My wife of 14+ years Marla was diagnosed with PAH 16 months ago. Last March she was in right hear failure and had a mean pulmonary pressure of 138. At that time she was placed on Flolan and a host of oral meds. If it were not for the online chat and the ability to connect with others with PAH I don't think she could have moved past the initial shock. Today, I am over joyed to report that she returned from her quarterly check up with Dr. James Gossage and her pulmonary pressures and heart size are within the range of normal.

From March 2009 to January 2010 she has successfully been transitioned off of Flolan to Tyvaso and her oral meds have been reduced. The mental stigma of PAH still remains but the PHA chat is a constant source of hope, joy, sadness and renewed belief that together we can overcome. The community that PHA provides is instrumental in not only the physiological well being of PAH patients but their mental well being as well.

From a caregivers perspective and being in the medical field for the past 10 years I have to say PHA is a God send. I had the privilege of attending the PHA on the road in Orlando last year. WOW what refreshing change of paradigm of patient, physician, and pharmaceutical interaction. But most of all it is a great opportunity for me personally to interact with other care givers and PAH patients via the online chat. A year ago I was one who didn't know where the road was going to take us and now I find myself a unique position of knowing where the road could go and sharing it with others.

Again Thank You and PHA for all that you do to make things a little easier.

Anyone in the PH community can connect with a scheduled (or unscheduled) chat through the PHA website.