The Social Security Administration (SSA) proposed changing the social security disability insurance (SSDI) process to make its eligibility review more frequent. PHA opposes the change and wrote to SSA in January to recommend that people with pulmonary hypertension (PH) undergo eligibility review less often.

Currently, SSA reviews SSDI eligibility every year, every three years or every five to seven years. The frequency depends on how likely SSA thinks someone will improve and return to work. Typically, SSA places people with PH in the three- or seven-year review categories, depending on the severity of their disease, whether they have other health conditions, what treatments they take and other factors.

SSA proposes to add a new two-year review category and condense the current five- to seven-year category to six years. The proposal was unclear about which health conditions would move to the new two-year category.

PHA knows that many people with PH continue to face major health challenges even after beginning therapy. In addition to PH symptoms, PH patients may face significant medication side effects and the burden of managing therapies that are complex to administer. PHA also heard from our members who receive SSDI that the review process itself can be burdensome. Even when the paperwork isn’t difficult, some patients reported dramatic increases in anxiety during the months that they waited to see whether they still would be eligible for assistance.

PHA shared these perspectives in formal comments to the Social Security Administration, strongly opposing any change that would lead SSDI recipients with PH to face more frequent eligibility review. In addition to PHA, more than 120,000 organizations and individuals submitted comments on the proposed change. SSA will review all comments before issuing a final decision about its proposal.