Wednesday, April 7, 2010

The quiet side of the fight...

Today was about one of those quiet pieces of work that makes a big difference for PH patients...

Several years ago, PHA noticed that many patients who applied for Social Security Disability were being rejected.  While most negative opinions were reversed on appeal, a lot of time and energy was lost.

That led us to a series of meetings with the Social Security Administration through which it became clear we had two major issues to resolve. 

The first - and quicker to solve - was to provide better training related to PH cases for the Social Security adjudicators.  About a year ago, with the support and cooperation of the Social Security Administration, we were able to script an official SSA training film, through the volunteer efforts of Dr. Adaani Frost.  That film is now available for the adjuducators and you can see it too.

The second issue took a major leap forward today. 

The standards on which the SSA makes disability judgments for PH patients were written at a time when there was much less understanding of the disease. Consequaently, they need to be updated to allow for a fair judgment. For the past two months, a team of PHA volunteer physiciansand lay experts, led by Drs. Ron Oudiz and Robyn Barst entered into discussion with SSA physicians and administrators.  This resulted in the development of a targeted presentation by Dr. Oudiz that was made today.  A very rich and extended discussion led by Drs. Oudiz, Barst and Hap Farber followed.  The education they provided and followups they were invited to provide will play an important role in helping SSA's Working Group complete the task of creating practical, meaningful and fair criteria for PH patients applying for Social Security disability.

A special thanks to Hap Farber, M.D., Alan Harder, Gavin Lindberg, Jennifer Jaff, Katie Kroner and Carol Vreim who worked extensively with Drs. Oudiz and Barst on this project, to Drs.Val McLaughlin, Greg Elliot, Adaani Frost, Mike McGoon, Nick Hill, Erika Berman Rosenzweig and Charlie Burger who provided medical review and to Margaret Beardsworth who staffed the project.

Issue by issue, it's always gratifying to see how ready members of the PH community are willing to jump in when needed to move our common cause forward.

You can see the slides presentation from today's meeting by going here and then clicking on other meeting resources in the right column.


  1. What a valuable effort PHA and these volunteers have made on behalf of PHers who are too ill to fight the SSA on their own.

    I wish more people knew how hard PHA works to bring about these necessary changes. Please extend my gratitude to everyone involved.

    Thank you for continuing to be an advocate for the PH community.