Problem Solver: Kidney transplant recipient approaching deadline for anti-rejection drugs
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Katie Fairbank Problem Solver problemsolver@dallasnews.com
Published: 22 November 2012 08:39 PM
Billy Dawson has always lived with numbers.
He’s had to check his insulin levels for four decades. He’s had a triple bypass. He spent more than two years hooked up to a dialysis machine three times a week for about four hours at a time.
He got three calls that he was the finalist for a kidney transplant and drove from his home in Waxahachie to Baylor University Medical Center in Dallas only to be turned away.
A fourth call resulted in a kidney.
Since then, he takes two insulin shots, 12 pills in the morning and eight at night.
But the number that loomed most recently for Dawson was how many days he had left for Medicare coverage of the anti-rejection medication he’s taken since his transplant.
“I’m at the end of my time on the coverage. I called and got the price for the medicines and just for anti-rejection medicine alone, it comes out to about $1,750 a month. If I don’t take that medicine, I’ll lose that kidney and I’ll be back on dialysis,” said Dawson, 54.
Medicare covers kidney patients under the age of 65 for only 36 months after the transplant surgery, a limit written into the statute under the Social Security Act. The rationale for the ruling is that younger patients will recover from end-stage renal disease following the transplant, get a job and buy private insurance through their employer.
But Dawson — like many other transplant recipients — is unlikely to be hired.
“I can walk from my house to my mailbox, which is about 100 feet,” he said. “I’m just worn out when I get back in. My heart doctor said I should not go back to work and I’m not capable of working.”
As the coverage time limit edged closer, his mother contacted Problem Solver looking for options.
“If you’re given a life for three years, you jump on it,” said Barbara Dawson about the limited number of months that immunosuppressive drugs are covered. “It’s a shame that that after that point they don’t care about you. I think people need to know that. Three years goes really fast.”
According to the most recent numbers available from the National Kidney Foundation, Medicare spends about $19,000 on average for individuals with a functioning kidney transplant about a year after the surgery. Meanwhile, dialysis — which is wholly covered by Medicare for a patient’s lifetime — costs about $77,500 a year.
Even with the $110,000 average cost of surgery added, the drugs become a cheaper route than dialysis some time during the second year.
Advocates have pressed that point and fought for changes to the statute for years.
The Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act would extend Medicare coverage of immunosuppressive drugs, but the proposed legislation has foundered for more than a decade.
Nineteen groups — representing such interested parties as kidney doctors, transplant surgeons and dialysis patients — wrote a letter in June in an attempt to spur lawmakers to action.
“It is not sound public policy or cost effective for Medicare to cover a kidney transplant and then stop immunosuppressive coverage after 36 months — which can, and all too often does, lead to someone rejecting the transplanted kidney because they cannot afford their medicine,” the letter reads.
The New England Journal of Medicine reported a study in February that Medicare would realize a savings of $200 million a year if lifetime drugs were provided. Authors John S. Gill and Marcello Tonelli called the current policy “irrational and needlessly wasteful.”
“Although the decision not to provide lifetime coverage for immunosuppressive drugs might once have been justified by the hope that transplantation would improve the health and earning power of patients with kidney failure, allowing them to obtain private insurance, this optimism is not borne out by the current reality,” the study reads.
Patients are wary of admitting they didn’t take their anti-rejection medications because it might keep them off the list for another replacement kidney.
Even so, a 2010 survey found that more than 70 percent of kidney-transplantation programs reported that their patients had an “extremely serious” or “very serious” problem paying for immunosuppressive medications.
“Sixty-eight percent reported deaths and graft losses attributable to cost-related nonadherence,” the study found.
Mary Beth Callahan, a senior social worker with the Dallas Transplant Institute, said that nationally it is believed that the lack of anti-rejection drugs is the third-leading cause of transplanted kidney loss.
The bulk of what she and her colleagues do is to ensure people have access to the medications. The conversation begins even before the transplant, but for desperate patients on dialysis an issue three years down the road is not their primary concern.
There are different avenues to help patients find drug coverage, including pharmaceutical-assistance programs, job-assistance programs that could help extend coverage, help in applying for disability coverage and Medicaid. Most of those options are income-based.
Callahan, who has worked in this field here since 1984, said that she’s found patients confused about their coverage. They believe it is ending under the 36-month rule when they actually may have Medicare based on disability relating to their kidney disease. Medicare continues under disability until the government finds that the patient is no longer disabled.
“People who have an ‘A’ at the end of their Medicare number are getting disability and it’s not necessarily going to end,” said Callahan.
When I told Dawson that information, he reviewed his own number and found he did have an “A.” He then met with a social worker at the transplant institute and found that he will have to do a good deal of paperwork, but it is unlikely that he’ll lose his anti-rejection drug coverage.
“That’s wonderful!” said his mother. “That makes me breathe a little easier. Thank God he is covered, and I want the rest of them covered, too.”
Follow Katie Fairbank on Twitter at @ProblemSolverKF.
http://www.dallasnews.com/investigations/problem-solver/20121122-problem-solver-kidney-transplant-recipient-approaching-anti-rejection-drug-deadline.ece
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