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Cardiovascular Disability Cover

An Insider’s Perspective

For pulmonary hypertension patients, applying for Social Security Disability (SSD) can be challenging. While 30 percent of disability applicants get approved in their initial filing, PH patients may be at a disadvantage, because language in the Social Security Administration’s (SSA) Listing of Impairments does not properly include PH.

Since 2008, PHA has been working with SSA to update the Listing of Impairments, include PH in the Compassionate Allowance program and ensure that PH patients get onto disability as quickly as possible, if they qualify.

A Brief Look Back

  • 2008: PHA met with the Social Security Administration (SSA) shortly after Alan Harder - former SSA employee and caregiver to his wife and PH patient, Marsha - brought to our attention that outdated listings regarding PH were leading to unnecessary application denials.

  • 2009: The SSA created a training video to educate adjudicators about PH-related listings based on a script created by the SLC:
  • Spring 2010: The SSA invited the Scientific Leadership Council – PHA’s committee of leading medical experts in the PH field – to present to the Institute of Medicine (IOM) committee charged with updating the SSA’s Cardiovascular System Listings. Dr. Ronald Oudiz presented on how to best include PH in the SSA’s Listing of Impairments used to determine if a patient is eligible for Social Security disability. View the SLC’s Presentation

View PHA’s Statement on Disability

The SSA is still in the process of revising the listings. Any changes to federal regulations have to go through a multi-step process involving public comment periods. PHA will continue to advocate on behalf of the PH community. Stay tuned!

“I was pleased to have the opportunity to testify, because I know how hard it can be to receive Social Security benefits, due to my own condition, but also due to friends and family who clearly are unable to work and, yet, cannot seem to convey this to the Social Security Administration."-Ellen Harris, PH Patient
  • November 2010: PH patient Ellen Harris brought the PH community one step closer to being among the 88 other disease states listed in the Social Security Administration’s (SSA) Compassionate Allowance program. Armed with a moving personal story, Ellen Harris delivered a poignant testimony that culminated in the recommendation of “Pulmonary Arterial Hypertension (PAH) – with NYHA/WHO class IV symptoms and/or severely reduced exercise capacity” as a compassionate allowance.

As with our efforts to update SSA’s Listing of Impairments, we continue to work closely with the SSA to ensure that qualified PH patients access their disability benefits as soon as possible.

Watch a recording of the hearing

  • September 2014: PHA attended the first National Disability Coalition meeting to discuss ways to improve SSA's disability program. 


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Dr. Oudiz

"During the actual meeting, both the SSA members and the members of the Institute of Medicine were extremely receptive to our input… We believe that by the time the SSA disability guidelines are updated, limitations unique to PH patients will be formally recognized and will help SSA better determine the need for disability in our patients."
Dr. Ronald Oudiz

A special thank you...

To all who have volunteered their time and expertise on this initiative, including Drs. Ron Oudiz, Robyn Barst, Harrison Farber, Vallerie McLaughlin, Greg Elliot, Adaani Frost, Mike McGoon, Nick Hill, Erika Rosenzweig, Charles Burger and Carol Vreim as well as Alan Harder, Gavin Lindberg, and Jennifer Jaff.

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The information provided on the PHA website is provided for general information only. It is not intended as legal, medical or other professional advice, and should not be relied upon as a substitute for consultations with qualified professionals who are familiar with your individual needs. PHA does not endorse or recommend any commercial products or services.

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The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.