Wednesday marks seven years since Alexis Conell received the kidney transplant that saved her life, however the 53-year-old Chicago woman isn't exactly celebrating.
Although the us government paid most of the costs on her 2012 transplant, a long-standing Medicare policy halted coverage three years later for that drugs that keep her body from rejecting the organ.
So when Conell lost her job suddenly last September, she also lost her medical health insurance – and her ability to pay the 16 daily medications she must survive.
“I was terrified,” she said. “All you're thinking is, 'I don't want to lose my kidney.'”
For nearly a half-century, Medicare has covered patients, no matter age, who've end-stage renal disease, including make payment on 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 every month.
Last week’s announcement of the Trump administration overhaul of kidney care within the U.S. has reanimated an attempt by federal lawmakers and kidney care advocates to increase drug coverage.
“After a transplant, patients shouldn't need to bother about if they'd like to 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 through the Congressional Budget Office pegged the cost at $400 million over 10 years if the government were to extend lifetime drug coverage to people 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 requirement for patients to obtain additional transplants or dialysis. Based on financing, savings could reach $300 million in that period, suggested a quote through the Centers for Medicare & Medicaid Services.
Armed with this particular data, a bipartisan coalition led by Kind and Rep. Michael Burgess (R-Texas), a physician, is anticipated introducing legislation by August that would narrowly extend Medicare's Medicare part b program to provide drug coverage for kidney transplant patients who have no other option.
“We must ensure patients get access to immunosuppressant coverage to ensure the success of their transplant, which keeps costs down by reducing 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 if the CBO agrees that paying for the medication would save the federal government money, advocates said. The new estimates by CMS suggest that changing this program would increase costs initially, with savings apparent once ten years.
Dr. Emily Blumberg, president from the American Society of Transplantation, said there appears to be high-level support for change now. In championing the overhaul of U.S. kidney care policy, Health insurance and Human Services Secretary Alex Azar has cited a personal tie, noting that his father suffered from kidney failure and received a transplant in 2021.
Critically, Azar said during the announcement last week that the Trump administration is supportive of the legislative efforts. “We are hoping Congress will work together with us to alleviate that time limit so that we can support patients on immunosuppressants in the long run,” he said.
On a phone call with reporters on Wednesday, Tonya Saffer, vice president for health policy at the National Kidney Foundation, asserted using the administration’s backing, the audience is hopeful this legislation might finally go somewhere. A key next step is an analysis on what it would cost or save in the Congressional Budget Office.
“There's a CBO score forthcoming,” she said. “The legislation still needs to be introduced, however i know that the members will work using the Congressional Budget Office to attain that legislation.”
Nearly 100,000 patients are awaiting kidney transplants within the U.S. and about 10 people die each day due to an ongoing shortage of organs.
More than 56,000 Americans with functioning kidney transplants do not have Medicare coverage, according to data in the U.S. Renal Data System. About two-thirds pay for their medications through private insurance, Medicaid or other government programs, experts said.
But about one-third of those patients might have no other supply of drug coverage, which can lead to missed doses, jeopardizing their new kidneys. A 2010 study found that nearly 70% of U.S. kidney transplant programs reported deaths or organ losses proportional towards the very high cost anti-rejection drugs.
If Medicare drug coverage have been extended in 2021, it would have averted a minimum of 375 kidney transplant failures that year alone, the most recent analysis showed.
When transplants fail, patients can die – or they have to go back to dialysis – taken care of by Medicare for around about $90,000 per year, having a poor prognosis.
“It's a no-brainer that you ought to do that both from a moral and ethical and, now it may sound like, cost perspective,” said Dr. Robert Gaston, a nephrologist in the University of Alabama-Birmingham who co-authored a call for coverage in an Institute of Medicine report two decades ago.
Conell battled end-stage renal disease for years before receiving her kidney transplant. When she lost her job abruptly last fall, she had to cancel scheduled medical appointments and diagnostic tests.
She drained her savings, then nearly ran from medication before she found a pharmaceutical firm program that gives the drugs she needs at a deep discount.
“If I needed to pay full price on their behalf, it would easily be $3,000 or even more monthly,” Conell said.
When her unemployment benefits ended in April, Conell qualified for Medicaid, which provides coverage for her drugs for now. The strain continues to be unrelenting, said Conell, who spent a day a week ago in the er with dangerously high blood pressure.
“I was attempting to look for a job, concerned about paying my bills. Ultimately, I'm worried about losing my kidney,” she said, adding that the long-delayed legislation could solve the problem. “I think they should pass it, like, yesterday.”