By Consumers For Quality Care, on April 9, 2019
Physicians who work with transplant recipients are highlighting a coverage gap that makes it harder for some to get the drugs they need to avoid organ rejection and stay alive, The New York Times reports.
The drugs are vital for patients like 72-year-old Claudia McGinness, who underwent a double-lung transplant in 2008 after idiopathic pulmonary fibrosis destroyed her lungs and impacted her breathing. McGinness was not tolerating one of the standard anti-rejection drugs and another didn’t work. Her physicians switched her to a third medication, Sirolimus. Medicare denied her claim for the drug, as well as both of her appeals. Sirolimus costs nearly $500 a month without insurance, which is more than she can afford. McGinness has been forced to forgo anti-rejection medication and hope for the best.
“I hope I don’t go into chronic rejection,” she said. “You can’t cure chronic rejection. You die.”
Physicians and consumer advocates are highlighting stories like these, where patients struggle to get the drugs they need post-transplant. More and more, they find themselves asking insured patients how they plan to pay for their anti-rejection medications. Physicians say the issue is prominent with patients who receive an organ transplant while enrolled in private insurance and later switch to Medicare. Consumers who receive organ transplants while covered by Medicare have the drugs covered for the rest of their lives by the federal program.
It is “an emerging and alarming problem,” according to the American Society of Transplantation — another maddening twist in our convoluted, contradictory and confusing health care system.
Physicians say that some anti-rejection medications aren’t given large clinical trials to prove their efficacy, despite wide usage. Doctors report that drugs approved for one kind of transplant often work for another kind. However, the lack of clinical trial keeps the drugs off of Medicare Part D’s approved list and leads to denials for consumers.
Dr. David Roe, medical director of the lung transplant program at Indiana University Health, calls the coverage gap a “life-threatening problem.” He has repeatedly appealed on the part of his patients, even appealing to a judge more than once, he said. But he never got the insurers to pay.
“These drugs work, in transplant patients, regardless of the organ. We all know they work,” Dr. Roe said.
Physicians say that some transplant centers are working with drug manufacturers to get drugs donated. Other say they have suggested that patients turn to fundraising or charity. All highlight the severity of the denials: when patients’ bodies reject the transplanted organs, they can die.