Maryellen Ramstack learned in November that her Medicare prescription plan through Aetna wouldn’t cover Adempas (riociguat) in the new year. For the past four years, Ramstack, of North Carolina, has been stable on Adempas, the only drug approved by the Food and Drug Administration to treat CTEPH.
Ramstack is among the people who recently learned some Medicare plans remove PH therapies from their drug formularies. The changes affect people with pulmonary arterial hypertension and chronic thromboembolic pulmonary hypertension.
The plans include, but aren’t necessarily limited to, Aetna, SilverScript and Humana. Specific therapies vary by plan. At least one plan no longer will cover Adempas, Opsumit (macitentan), Tracleer (bosentan) and/or Ventavis (iloprost).
Deeply troubling
Thankfully for Ramstack, her care team requested an exception and received approval before the new year. However, the idea that her insurance company would consider ending coverage for this life-saving drug at all was deeply concerning to Ramstack, a retired nurse. She reached out to the Pulmonary Hypertension Association to report what had happened to her and see whether others were experiencing similar troubles.
Her suspicions were on target. Rosemary Graham of Atlanta received an email in November from Aetna that said the insurance company was dropping her medications from its covered drug list. Graham, who was diagnosed with pulmonary arterial hypertension in 2012, takes Letairis (ambrisentan) and Tyvaso (treprostinil).
After hearing from Aetna, Graham contacted PHA and Sens. Ralph Warnock, Jon Ossoff and Rep. Nikema Williams, all Georgia Democrats. She also contacted two other rare disease advocacy organizations.
Graham initially searched for a better Medicare Advantage plan but found that Aetna was still the best option available in her area. After contacting Aetna, Graham received prior authorization for Tyvaso and learned that her Letairis prescription was covered by a prior authorization through January 2025.
Forced to switch treatment
Jackie Goodman of Chicago wasn’t as fortunate. Goodman, who takes Opsumit to treat her PH, learned that Humana wouldn’t cover her Opsumit in 2025. Goodman’s health care team appealed and was denied twice.
Her doctor is now recommending she switch to ambrisentan, the medication her insurance will cover instead. Goodman called PHA in January to discuss her concerns and find out what her options are. She worries her body will react differently to this medication, despite her doctor’s assurances that the two are similar.
Taking action
In November 2024, PHA sent a letter to CVS Caremark, the company that manages Aetna, SilverScript and other Medicare plans. The letter called attention to the life-threatening nature of the formulary changes. CVS responded that health care providers should use their formulary exception process. CVS said the formulary exception process should take about the same amount of time as prior authorization for a covered specialty drug.
PHA will continue to fight for formulary inclusion of all targeted PH therapies so PH treatment can be driven by patient needs and medical expertise.
How you can help
If your Medicare drug insurance no longer covers your PH treatment, email us or call 240-485-0758. The more stories we can collect, the stronger a case we can build to push back against these coverage changes.
Maryellen Ramstack
Jackie Goodman
