People make change...

We usually write about end points...the things that happened.  The reality is that the outcomes and results we celebrate are most often built upon long and hard work.  Today, my blog is about a year's long process that, in truth, began quite a bit before the 2006 event with which I open and will no doubt continue long after this month's victory with which I close...
In 2006, Carl Hicks (then PHA board chair-elect), Dr. Ramona Doyle (then at the Vera Moulton Wall PH Center at Stanford, Congressman Tom Lantos (who has since passed), our Washington representative Gavin Lindberg, myself and others went to the Department of Health and Human Services to meet with their leadership and discuss our concerns about the then new PH transplant standards.  The new rules moved PH patients lower on the priority list...based on interpretations of information that our medical leadership and PHA disputed.

HHS was engaged and the meeting led to follow ups with the United Network for Organ Sharing (UNOS).   UNOS is the private, non-profit organization that manages the nation's organ transplant system under contract with the federal government.

PHA's medical leadership worked hard to get it right and to build some appropriate flexibility into the system for PH patients.  Their interest led to increased activity within the influential International Society of Heart and Lung Transplant (ISHLT) and, for the past several years, these doctors have been building a strong and active assembly within ISHLT and continuing to engage UNOS.

In early-August, PHA circulated the following message to over 600 physicians who are members of the PHA medical group, PH Clinicians and Researchers.  (The LAS mentioned in the note refers to the Lung Allocation Score.)

Physicians PHA works with, who are also involved with the REVEAL Registry, gave a presentation at the ISHLT in 2009. Following that, UNOS invited them to speak to the thoracic council about their results on the LAS score. Dr. Ray Benza was then asked to be on the thoracic board and began to advocate changes in the LAS for PH patients. Dr. Benza reports that the Thoracic Board - particularly its current chair, Mark Barr - was very receptive. UNOS’ new policy on submitting lung allocation score exception requests for candidates diagnosed with PH appears below.

Dr. Benza has asked us to circulate this to the PH medical community as quickly as possible since it may impact current and future patients awaiting transplant.
PHA thanks and congratulates the physicians who have been building a rapidly growing and effective PH section within ISHLT, including Drs. Benza, Frantz and Park and others and Dr. Benza for his work on the UNOS thoracic board.

The change is partly described by UNOS, as follows:

Lung transplant candidates diagnosed with pulmonary hypertension (PH) and who meet the following criteria may qualify for an increase in their Lung Allocation Score (LAS):

1. Patient is deteriorating on optimal therapy, and

2. Patient has a right atrial pressure greater than 15 mm Hg or a cardiac index less than 1.8 L/min/m2.

We hope this decision will increase options for more patients living with PH and needing to consider the transplant option. 

People make change.  We benefit from their persistence and thank them for their dedication.

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.