Risk to reality...

Today, I did something that astonished me.

I signed a licensing agreement that will help PHA bring medical education to India in an important new way.

Why this was astonishing goes back to 2000...

On the second day of PHA's Fourth International Conference - June 24, 2000 - in the atrium of the Wyndham Hotel, Dr. Bruce Brundage, Craig Mears (then of Gentiva) and I met to talk about the possibility of publishing a medical journal.

Bruce had the reasonable concern that any publication not be "a throwaway" for the doctors who would receive it.  I saw the impact it might have but wasn't sure whether there was enough content to sustain a medical journal over the long term.  Craig was willing to talk to his company about the initial funding.

It was a different time then. There were only about 100 treating physicians in the U.S. - and they were seeing about 3,000 patients.  Only one complex and still relatively new treatment had been approved by the FDA at that point, not the nine we have today.

Several months after the Conference, Dr. Brundage (then Chair of PHA's Scientific Leadership Council) convened a telephone conference to talk about the possibility.

The group understood the potential value and decided to move forward.  Dr. Tapson at Duke was invited to become the first editor and we were off and running.  Advances in Pulmonary Hypertension: the Official Journal of the Pulmonary Hypertension Association published it's first issue in 2002.  It was a big name for a then small organization.

We were taking a huge risk for a potential large benefit. At the time of the Chicago meeting, PHA was an organization that just a year earlier had a total annual budget of $137,000.  Now we were taking on the responsibility for a new project that would cost over a quarter of a million dollars per year.  Some might say we were crazy.

As it turned out, the risk more than paid off.  Advances has published regularly in the ten years since then, reaching over 40,000 cardiologists, pulmonologists and rheumatologists four times each year, providing leadership and education from world recognized experts.  The field has grown considerably since Advances began publishing and I'm confident in saying that this journal has played an important role in that growth.

Now back to India... About 10 percent of the publication's distribution is sent to physicians in 63 nations outside the U.S. and international interest has been growing.   Over the past year, PHA has received several unsolicited requests to license international distribution and translations of Advances.

The editorial committee, led by Dr. Erika Berman Rosenzweig of Columbia University has carefully worked out a template agreement for international licensing that protects the integrity of content and allows, with PHA's editiorial review and approval, the addition of some additional content relevant to the particular nation.  Leadership of PHA's Scientific Leadership Council has approved the template.

Today, I signed our first agreement.  An Indian edition of Advances will soon be published. 

May it be as valuable to Indian physicians and their patients as Advances has been in the United States...and may it be the first of many such agreements.

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.