In 2008, the Pulmonary Hypertension Association (PHA) approached the Social Security Administration (SSA) with a problem. Despite the life-altering, often fatal nature of pulmonary hypertension (PH), and the fact that it leaves many unable to work, people with PH faced a long and complex road to qualifying for disability assistance.

Recently, that road became easier.

When making a disability determination, SSA first reviews an individual’s medical records for references to conditions that typically qualify for disability — the “disability listings.” When a person’s medical records do not match the qualifying listings, they may still be eligible for assistance, but they must pursue a multi-step process and provide additional information to prove that they qualify. Until recently, the respiratory listing most relevant to PH did not even use the words “pulmonary hypertension.” Instead, SSA staff reviewed medical records for an out-of-date phrase, “cor pulmonale.” The language was so old that physicians seldom included it in medical records. Disability applicants with PH almost always had to take the longer route to qualify for assistance.

Over the past decade, people living with PH and the medical professionals who care for them have advocated for streamlined disability approval for PH. Updating listing language can often take many years, so in the meantime, PHA and SSA worked together to create a video educating disability claims adjudicators about PH. PHA also advocated for PH to be included on SSA’s “Compassionate Allowance” list of conditions that receive expedited disability approval.

At a recent SSA forum on disability assistance, PHA learned some good news.

SSA has finally updated its disability listings, removing the outdated language and replacing it with “chronic pulmonary hypertension due to any cause.” This new language should help streamline approval for applications related to PH.

PHA will continue to advocate from faster, easier access to disability assistance for those with PH who need it. If you have questions about PHA’s work with the Social Security Administration, please contact Katie Kroner at gro.noitaicossAHP@ecnarusnI or 301-565-3004 x749