Transplant Patients Need Anti-Rejection Drugs. Why Won’t Insurers Pay for Some of Them?

Drugs to prevent organ rejection are not always covered for patients who had transplants before they enrolled in Medicare.


The question might seem indelicate. But transplant centers find it is necessary these days to know the answer even before they place a patient on the list for an organ transplant.
“How will you pay for the anti-rejection drugs?”
These are patients with insurance — they need it to pay for the transplant itself — so it might seem obvious that their insurer would pay. But if, as often happens, the patient gets an organ transplant with private insurance and later enrolls in Medicare, she may be in for a shock.
Necessary anti-rejection drugs may not be covered under Medicare. And without those medications, the body may reject the organ, with deadly consequences.

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.
For those who are on Medicare at the time of an organ transplant, anti-rejection drugs are covered by the federal program for the rest of their lives.
But most organ transplants go to to younger patients. According to the transplant society, 72.3 percent of liver transplant patients, 65.3 percent of heart transplant patients, and 59.7 percent of lung transplant patients are insured outside of Medicare at the time they receive new organs.
Patients who were not on Medicare at the time of their transplants are required to get their anti-rejection drugs through Medicare’s drug program, Part D, which is handled through commercial insurers.
Those insurers refuse to pay for many anti-rejection drugs, on the grounds that they have not been approved for certain transplant patients. Payment is required by Medicare only if the drug has F.D.A. approval for a specific organ transplant, or this use is cited in one of two drug compendia that Medicare approves.
Johnathan Monroe, a spokesman for the Center for Medicare and Medicaid Services, wrote in an email that one of the agency’s “top priorities is to ensure that beneficiaries have access to the medications they need, including immunosuppressant drugs.”

Cathryn Donaldson, a spokeswoman for America’s Health Insurance Plans, which represents insurers, said in a statement that the indications for anti-rejection drugs “are defined by federal guidelines, not health insurance providers.”
For patients receiving new kidneys, access to anti-rejection drugs usually is not a problem. They are almost always on Medicare before their transplants, kept alive with dialysis. And the medications were fully tested in this group, the largest among transplant patients.
But large clinical trials usually were not done to show the efficacy of some anti-rejection drugs in other transplant patients, because there were fewer of them. As a result, these medications are not officially approved for these patients, even though the drugs are widely used.
Doctors say they learned by experience that many of the same drugs approved for some organ transplants also are effective in patients with other organ transplants. But Medicare Part D insurers are not required to pay for them.
As a result, many Medicare patients — including most receiving lungs and many who have a transplanted intestine, pancreas or heart — need drugs that are not reliably covered by Part D insurers.

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.

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