Donna Peratino is no stranger to the trial-and-error struggle of finding the right medication. Diagnosed with pulmonary arterial hypertension in 2015, she and her health care team tried various experimental drugs before settling on a brand drug that hit the sweet spot of effectiveness without side effects.

Peratino, of Silver Spring, Maryland, remained on that treatment for seven years. However, after a generic version became available, Donna’s insurance refused to cover the brand version. She had to switch to the generic.

Within a few months, Peratino and her husband Greg noticed her PH symptoms worsening. They also noticed the onset of seemingly unrelated health problems. After a few months, her pharmacy called to ask whether she had experienced certain side effects. She realized her downswing in health might be due to the switch.

Find out how Peratino pushed back with her insurance and secured coverage for the version of the drug that works best for her.

Document health changes. Peratino’s care team was already monitoring her hearing due to unrelated hearing problems so she had been documenting one of the generic’s inexplicable side effects: hearing loss. It’s important to pay close attention to physical changes if your treatment changes.

Ask people around you to help monitor your condition and take careful notes of how you feel each day. The notes will show why your preferred treatment is best and the negative effects of the treatment your insurance is pushing for.

Do your research. It was a real “eureka” moment when Peratino began reviewing the generic medication’s side effects. She realized she had developed six of the eight listed.

She then looked into the manufacturer of the generic and checked the Food and Drug Administration’s website for information about problems with the drug. She discovered a warning letter that noted poor manufacturing conditions and cross contamination, which solidified her certainty that the generic was the cause of her troubles.

Be tenacious. Once she realized the generic was the culprit, Peratino became “a dog that just wouldn’t give up the bone” in fighting to get her insurance to cover the brand version of her drug.

“Ensure your PH doctor is on board for fighting the good fight,” she recommends, as it will take several levels of appeal before your insurance is likely to grant coverage. The appeals process can be lengthy, so it’s important to appeal the coverage denial as soon as you can.

Consider reaching out to your specialty pharmacy for an emergency supply or financial assistance to cover the preferred treatment if you need to switch before the appeals process is completed.

Learn more about appealing an insurance claim denial. Call 301-565-3004, ext. 758, or email insurance@PHAssociation.org to reach PHA’s treatment access program.

This story originally appeared in the fall 2023 issue of Pathlight, PHA’s quarterly member magazine. Join or renew your Pulmonary Hypertension Association membership to receive Pathlight and other exclusive benefits.