The tan and white capsules that allow 19-year-old Matthew Kinney to live a normal life with a transplanted kidney lay on his kitchen table in a paltry cluster.
“Five, 10, 15 …,” the Simi Valley teen counted on a May Friday before reaching the 44th and final pill — about a five-day supply. “It just all adds up to devastation.”
Without nine capsules daily, the young man with a lifetime to fill out his matchstick physique will lose the organ. He’ll spend three days a week in dialysis treatments that on average will cut the life span of a white male his age by 23 years.
With the pills, he can focus on the earth science class he needs to complete high school, and pursue a life that isn’t disabled, or from his vantage point, dependent.
“All my life, I’ve had people say ‘You can’t do this and you can’t do that,’ ” Kinney explained. “I know I’m not the average person, but the average life is what I strive for.”
Kinney often feels alone. But he is among 144,000 kidney transplant patients nationally whose Medicare benefit for drugs they will need throughout their lifetimes has expired.
The drugs, known as immunosuppressives, or anti-rejection medication, allow the body to accept the transplanted organ at a cost of $17,000 year. But Medicare currently provides them for only 36 months, leaving transplant patients like Kinney in a desperate scramble.
Meanwhile, policymakers have chosen to provide kidney patients a lifetime of dialysis treatments, which funnels them to part-time lives and leaves taxpayers with a $71,000 annual Medicare tab for each patient — four times the expense of the anti-rejection drugs.
“This is economically inefficient and morally wrong,” said Sen. Dick Durbin, an Illinois Democrat who has twice proposed lifetime kidney medication benefits, only to see the legislation defeated.
The measure has been vigorously opposed by the influential dialysis industry, which counts Ventura County powerhouse Amgen as a key player.
Adding to the anguish of patients like Kinney, and to the public tab, is the fact that Medicare will cover the $100,000 average expense for kidney transplants, and 80 percent of the medication cost, only to let the medication benefits expire. When the kidney fails for lack of anti-rejection medicine, it leads to another costly, years-long dialysis stint, and a new transplant ringing up another $100,000.
We see patients come in after three and four years with failed organs, saying they can’t afford their medication. You sit there and you absolutely cry.Dr. Mark Aeder
Two of the precious, donated organs are expended instead of one.
“It’s a poster child for what’s wrong with the system,” said William Applegate, Senior Policy Adviser for the American Society of Transplantation, an advocacy group for transplant patients and the medical professionals who treat them.
Funding anti-rejection drugs
Under Durbin’s plan, government funds would be taken from the $8.6 billion annual outpatient dialysis budget and used to pay for anti-rejection medication coverage. Its estimated $100 million annual cost is slightly more than 1 percent of the dialysis budget.
Dialysis became a multibillion dollar industry under a unique funding structure — the only lifetime Medicare “entitlement” provided to people under age 65 who are not disabled.
Limits on anti-rejection medication were first established in the 1970s, when few transplants survived beyond a year. In the 1990s, with more organs surviving, legislators settled on a three-year limit out of cost concerns.
Durbin plans to reintroduce his legislation again this year, arguing that as many as a third of transplant patients are having trouble finding any job, let alone one with health insurance that would cover the medications. As they wait years for the procedure, most are in poor health and unemployable. For the minority who have been able to keep their jobs and insurance, there is no time limit on immunosuppressive drug coverage, but there may be higher copays and other costs.
The health reform law passed last year would not help these patients in need until full implementation in 2014, if it survives mounting federal court decisions against it. Even then, the law’s primary method for assisting people who have trouble finding work that supplies health insurance would be a government-subsidized insurance exchange that will differ in patient affordability from state-to-state.
Lobbying group Kidney Care Partners, which successfully challenged Durbin’s proposal last year, said providing lifelong kidney medication is the right thing to do, but maintains that no funds can be spared from the dialysis coffers.
“KCP strongly urges Congress to fund the vital coverage for immunosuppressive drugs, but not at the expense of patients receiving dialysis treatments,” said spokesman John Schmidt.
The group, based in Washington D.C., is financially supported by medical professionals, patient-advocacy groups and corporations, one of the most influential of which is Amgen of Thousand Oaks. DaVita and Fresenius, the nation’s largest dialysis providers, are also KCP members who lobbied against funding immunosuppressives with dialysis funds.
Amgen, the second-largest employer in the county — the Navy ranks first — patented the anemia drug Epogen in 1989. It is now used at dialysis centers nationwide at an annual billing of $2.5 billion. Its other drugs, including dialysis-related Sensipar and Aranesp, bring in $11.8 billion annually, according to company shareholder reports.
The company has aggressively protected its interests, even if that can work against transplantation, the most permanent health solution for the kidney patients who are its primary customers.
Amgen echoes KCP’s position: Dialysis funds should not be used to pay for immunosuppressive benefits. “Doing so forces one group of vulnerable patients to compete with another in a way that is unfair to both groups of patients,” said Christine Regan, the company’s spokeswoman.
The company spent $10.2 million on political lobbying last year, second only to drug giant Pfizer among pharmaceutical companies.
Finding another safety net
Families like Kinney’s have few resources to pay for their medication, let alone to buy political clout.
Kinney’s medication benefit expired in January, leaving him more dependent than ever on a mother whose most recent jobs were at McDonald’s and as a caregiver for an elderly woman.
In June, his goal was to fall from one safety net into another. Through Medi-Cal, the state and federally funded medical program for the poor and disabled, he sought an emergency card that would provide drug coverage.
He filled out forms and delivered paperwork about his income — $654 a month in government disability benefits — then returned to his bank to get more required documents.
Meanwhile, his last 1 milligram Prograf capsule rattled out of its bottle on the first Monday in June, forcing him to double up on a smaller dosage that was disappearing fast.
Running out of pills is dangerous because he experienced rejection symptoms once before, lowering his margin for error if he wants the kidney to survive.
“I was thinking as long as I take something, I’ll be OK,” he said.
Panicked, Kinney and his mother, Sheri Murphy, then tried Simi Valley’s Home Care Pharmacy. They were given a five-day supply of pills on IOU.
“We’ve already advanced him over $1,000 in medication,” said pharmacist Kent Miles. “It’s not the type of medicine you just stop taking.”
Finally, the day after Kinney’s Prograf ran out, Medi-Cal authorized emergency coverage.
But if he wants to keep his benefits, a decent-paying job can’t be part of the normal life he craves. If Kinney earns more than $27,250 a year, his benefits will shrink dramatically. If he accrues more than $2,000 in savings, he’ll lose all coverage.
According to a 2009 survey by the American Society of Transplantation, the difficulty in securing the essential drugs is common. It found that 68 percent of kidney transplant programs had some patients that either lost kidneys or died because they couldn’t afford the medicine.
The reason nothing has been done to help them: Policy has failed to catch up with medical advances for transplant patients, experts say.
When Medicare first provided renal benefits in 1972, there were only 500 patients nationally in line to receive a kidney. Sixty percent of kidneys from cadavers lost function within a year, according to the Human Renal Transplant Registry kept at the time.
The prevailing medical thought was that transplant patients who made it past the year were “cured” and might survive without immunosuppressive drugs, said American Society of Transplantation President Dr. Robert Gaston, who has written extensively on the history of U.S. kidney treatment.
Accordingly, Medicare offered only one year of anti-rejection drug benefits.
But by the early 1990s, nearly 75 percent of transplanted kidneys survived at least three years.
With the new survival rates, Congress asked the nonprofit Institute of Medicine to re-evaluate the drug benefit in 1991. It recommended a lifetime of immunosuppressive drug coverage so transplant patients would have benefits similar to patients on dialysis.
All my life, I’ve had people say ‘You can’t do this and you can’t do that.’ I know I’m not the average person, but the average life is what I strive for.Matthew Kinney
Another congressional evaluator, the Office of Technology Assessment, agreed that cost-savings should occur, but warned that providing lifetime immunosuppressive benefits could lead to transplant patients asking for lifetime coverage for secondary ailments such as high blood pressure.
The next year, Congress chose an intermediate approach, establishing a three-year drug benefit that remains in place today.
It is a flawed policy and “a historical artifact,” said Gaston.
Medical professionals like Gaston are not only troubled by the past, but worried about the future.
Growing numbers with kidney failure
On the horizon is an expected surge in patients with kidney failure, as America’s population ages and suffers increasingly from advanced stages of diabetes that lead to kidney disease.
In 1996, there were 308,000 patients with end stage renal disease, with 234,000 of them on dialysis, according to MedPAC, a congressional body that tracks Medicare expenditures. By 2006, their number increased to 506,000, with 355,000 on dialysis.
By 2015, the United States Renal Data System Coordinating Center projects there will be 712,920 people with end stage renal disease, with more than half a million of them on dialysis.
Not all dialysis patients qualify medically for a transplant. But 93,000 Americans have qualified, and are on a frustrating wait list for a kidney transplant that can delay the procedure up to 10 years.
A transplant gives these patients a new lease on life. According to the United States Renal Data System, the additional life expectancy of a dialysis patient between the ages of 15 and 19 is 18.5 years. That’s 23.8 years less than a patient of the same age who received a transplant.
But finally gaining a transplant could be moot if a lack of anti-rejection medication continues to force second transplants, and unneeded stints on dialysis.
“We see patients come in after three and four years with failed organs, saying they can’t afford their medication,” said Dr. Mark Aeder, a member of the UNOS Kidney Transplantation Committee who has performed more than a thousand transplants. “You sit there and you absolutely cry.”
Kinney is safe for now. But if he runs out of his drugs, the chance of his kidney shutting down quickly is high.
“If he has another episode of rejection, that’s it. The kidney’s not going to be saved,” said Dr. Jieshi Yan, Kinney’s specialist. “You feel bad for the patient because you know the next choice is to end up on dialysis.”
Meanwhile, Kinney reaches for his pills every morning and night, and worries.
“Something will change,” Kinney said, “and then I’ll have to reapply for this and all this crap will happen again.”
The tattoo that covers his slight chest is a reminder to press on. It reads: “Vive Ut Vivas,” Latin for “Live Life to the Fullest.”