WASHINGTON – Like many high school graduates, Katelynn Janes, of Cheney, made big plans last June: move out of the house, study psychology and eventually counsel young people who have chronic physical ailments.
Kidney failure didn’t make the list. But in December, after months of being lethargic and unable to eat, tests showed her blood was filling with toxins. She needed dialysis right away.
“I thought I was dying when they told me,” she said.
Doctors advised that she was a prime candidate for a kidney transplant. Her parents, Ben and Lisa, were matches, and she received one of her mother’s kidneys in a transplant procedure on March 8. The family calls her speedy path to a new organ a blessing, but it comes with a quirky price tag in federal law.
Despite her young age, Medicare automatically covered Janes’ dialysis costs and also paid for the transplant. But Medicare will only pay for her anti-rejection drugs for three years, and only 80 percent of the cost at that.
Critics say the discrepancy between full coverage for dialysis and partial coverage for post-transplant treatment is an outdated provision of a 1960s-era program – one that can more than double the annual treatment cost paid by federally funded Medicare. Extending medication coverage, despite a hefty initial investment, would save money in the long run and provide benefits to the nearly 20,000 Americans with renal failure who are neither retired nor disabled, they say.
A ‘ridiculous’ wrinkle in Medicare
Doctors diagnosed Janes, 18, with end-stage renal disease, the only condition for which Medicare has specific benefits. In the 1960s, Medicare promoted dialysis by covering patients’ costs for life because transplants were rare and anti-rejection drugs costly.
Since then, medicines have become cheaper and transplants more common. Anti-rejection drugs now cost a fraction of dialysis payments. A 2012 study from the United States Renal Data System showed Medicare paid between $66,000 and $88,000 per year for a patient on dialysis, compared to around $33,000 for anti-rejection medication. Given the cost of transplant surgery, Medicare savings kick in after about two years of drug coverage.
Providence Sacred Heart Medical Center’s Director of Transplant Services Tim Stevens said the benefits discrepancy is a long-standing issue.
“To us in the transplant world, it’s ridiculous that they would pay for a transplant and then wouldn’t pay for what sustains it,” Stevens said. Janes’ operation was performed at Sacred Heart.
Health care providers pursue all avenues to ensure patients can pay for anti-rejection drugs, including soliciting private foundations and insurance companies, Stevens said. But for patients still years from retirement or who haven’t yet been able to work because of their illness or age, Medicare is the surest avenue of support.
Night and day
Katelynn’s disease caught the Janes family off guard. She’s always been small, Ben Janes said, and her prolonged naps after school and choir practice were never a major cause of alarm.
The fatigue and nausea hit a breaking point in November after she hurt her foot at work. She took anti-inflammatories and developed a persistent rash. The diagnosis came a few weeks later, and she detected the pattern in her yearslong exhaustion.
“If anybody on the outside looked, they’d say, ‘Wow, this girl is really lazy,’ ” she said. “But I wasn’t. It was my body shutting down.”
Dialysis filters out toxins in the blood that would otherwise be cleaned by the kidneys. The difference after dialysis was night and day, her mother said.
“All of a sudden, she had a little bit of a spark in her,” Lisa Janes said.
That energy only intensified after Katelynn Janes received her mother’s kidney on March 8, but it comes at a high cost. Just one of Katelynn’s prescriptions costs $850 every two weeks, Ben Janes said, and the total cost of her immunosuppressant drugs comes to roughly $2,000 a month. Studies have shown the price tag for anti-rejection drugs leads many people to skip doses, increasing the risk of organ failure.
The potential debt burden has led the family to make tough financial choices, like selling their 2007 Dodge pickup. The $17,000 owed on the vehicle would be better spent on medication, Ben Janes said.
“We want this kidney, this gift that my wife has given, to last as long as it can,” he said.
Still, the Janeses worry about the choices they may have to make when Medicare funding runs out.
“We want so much for her to serve God, to love her family, to have a family,” Lisa Janes said.
Revising Medicare benefits to include anti-rejection drugs has largely stalled on Capitol Hill. Though offered as an amendment to the 2009 Affordable Care Act, Medicare spending would have increased by an estimated $400 million between 2010 and 2019 with the extension.
But researchers at Washington University in St. Louis found the plan would save money in the long haul. The initial price tag would be alleviated by the lower cost of immunosuppressant drugs compared to dialysis, lost wages and increased transplant failure. While Medicare spending would rise, the researchers found the net effect to the U.S. economy would be $136 million in annual savings.
The House of Representatives passed a version of the health care law that would have extended coverage for life. In the Senate, however, it was paired with a billing provision that was expected to cost drug companies a hefty sum. The lifetime extension was not in the Senate-passed version of the law signed by President Barack Obama, although the billing provision was enacted in a 2011 adjustment to Medicare law.
Despite previous failures, there is some hope within the transplant community that state health insurance exchanges created through the Affordable Care Act will include support for kidney patients. But Washington state has not yet made clear what – or if – anti-rejection drug coverage will be available.
On the federal level, Sen. Dick Durbin, D-Ill., has once again introduced a bill to amend Medicare by extending anti-rejection drug coverage indefinitely.
“This makes no sense morally, medically or economically,” Durbin said of the current benefit structure last month on the Senate floor. Durbin’s legislation sits on the Senate Finance Committee agenda, as it has for several successive Congresses.
An uncertain prognosis
Janes’ plans to attend BYU Idaho in Rexburg remain on hold. She hopes to enroll in January. Still, the Janes family – which includes four children ages 7 to 18 – counts itself lucky. Katelynn quickly qualified for a new kidney, and she and her mom are recovering well. Her drugs, while expensive, are few compared with other transplant recipients with more health problems.
Still, Ben and Lisa Janes worry about their daughter’s future, which is largely decided by a system they say is irrational.
While Katelynn acknowledges dialysis saved her life, she said she never wants to face the choice of going back on the treatments. She understands why some young people decide they can’t afford the debt that comes with a transplant.
“They want to be able to go out in the world and experience a good life and get a good job,” she said. “Dialysis doesn’t allow you to do everything.”
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