On Wednesday, Alexis Conell will mark seven years since she received the kidney transplant that saved her life, but the 53-year-old Chicago woman isn't exactly celebrating.
Although the federal government paid most of the costs for her 2012 transplant, a long-standing Medicare policy halted coverage three years later for the drugs that keep her body from rejecting the organ.
So when Conell lost her job suddenly last September, she also lost her health insurance — and her ability to afford the 16 daily medications she needs to survive.
"I was terrified," she says. "All you're thinking is, 'I don't want to lose my kidney.'"
For nearly a half-century, Medicare has covered patients, regardless of age, who have end-stage renal disease, including paying the costs of kidney transplants and related care, which run about $100,000 per patient.
But coverage ends after 36 months for those younger than 65 who don't otherwise qualify for the program — and that includes payment for the vital immunosuppressive drugs that cost thousands per patient each month.
Last week's announcement of the Trump administration's overhaul of kidney care in the U.S. has reanimated an effort by a group of federal lawmakers and kidney care advocates to extend drug coverage.
"After a transplant, patients should not have to worry about whether they can afford the treatment needed to keep their transplanted kidney," Rep. Ron Kind, D-Wis., said in a statement.
For years, Kind has been among a bipartisan coalition in Congress championing legislation targeting kidney immunosuppressive drugs — to no avail.
The sticking point was price. A 2009 estimate by the Congressional Budget Office pegged the cost at $400 million over 10 years if the government were to extend lifetime drug coverage to those patients.
Two recent federal projections show that Medicare could actually save money — between $73.4 million and $120 million over a decade — by expanding payment for anti-rejection medications to help decrease the need for patients to get additional transplants or dialysis. Depending on financing, savings could reach $300 million in that period, suggested an estimate by the Centers for Medicare & Medicaid Services.
Armed with this data, the bipartisan coalition, led by Kind and Rep. Michael Burgess, R-Texas, a physician, is expected to introduce legislation by August that would narrowly extend Medicare's Part B program to provide drug coverage for kidney transplant patients who have no other option.
"We must ensure patients have access to immunosuppressant coverage to ensure the success of their transplant, which will keep costs down by decreasing the need for a re-transplant or further dialysis," said Kind.
Sens. Richard Durbin, D-Ill., and Bill Cassidy, R-La., are poised to introduce their own legislation, sources told KHN on background.
The efforts in Congress will hinge on whether the CBO agrees that paying for the medication would save the government money, advocates say. Even the new estimates by CMS suggest that changing the program would increase costs initially, with savings apparent only after a decade.
Dr. Emily Blumberg, president of the American Society of Transplantation, says there appears to be high-level support for change now. In championing the overhaul of U.S. kidney care policy, HHS Secretary Alex Azar has cited a personal tie, noting that his father suffered from kidney failure and received a transplant in 2014.
More than 56,000 Americans with functioning kidney transplants don't have Medicare coverage, according to data from the U.S. Renal Data System. About two-thirds pay for their medications through private insurance, Medicaid or other government programs, experts said.