After Medicare ends aid for drugs to sustain new kidney, N.J. woman back on transplant list

Crystal Perkins is on the waiting list for a kidney for the second time.

Experts say the Camden woman’s story illustrates a too-common problem that costs lives and drives up health care spending in the United States.

Perkins’ first transplant was more than a decade ago. She was a young mom and, at that time, Medicaid and Medicare paid for much of her surgery and medical bills. The transplant was a success. Perkins got well and pursued a career as a cosmetologist.

“I went to school, I got my license and eventually I had my own salon. So I wasn’t eligible for Medicaid anymore,” said Perkins, now 41.

Perkins had a steady job, but no insurance. Private firms rejected her application or told Perkins she had to wait as long as a year to get coverage, she said.

Uninsured people with kidney failure typically qualify for Social Security disability, and therefore, Medicare coverage through the End-Stage Renal Disease Program. But three years after her transplant, the drug assistance Perkins received from Medicare expired.

The government pays for anti-rejection medications for only three years.

Perkins was taking five or six medications a day — the immunosuppressive drugs alone cost about $1,400 a month.

“I needed them to keep my kidney, but I just didn’t have it,” Perkins said. “I couldn’t afford it anymore.”

Without the proper medications, her transplant kidney eventually failed.

“Then what happens? They go back on dialysis. And guess what? Medicare starts paying for it again at the tune of $75,000 to $90,000 a year,” said Howard Nathan, president of the Gift of Life Donor Program.

Nathan and others say the expiration date for drug help doesn’t make sense. There have been a string of unsuccessful attempts to change the law.

“And there’s a lot of people who latch on to these bills, but a lot of times they never come out of committee,” Nathan said. “Everything is about cost containment and this looks as if it’s going to add cost to the Medicare expenses, when in fact it could be a real cost saver, and certainly a life saver.”

Perkins is back on the waiting list and hopeful the federal Affordable Care Act will help her and other transplant recipients in the future.

While she waits, Perkins is working with a nonprofit group to raise money for the extra expenses — including travel and lodging — that she’ll face when she gets the call again.

Nathan said in the Philadelphia region the wait for a kidney is often three to five years — and the need for donor organs is critical.

“The most important part is for people to say ‘I’m an organ donor’ and take 60 seconds to get on the registry,” Nathan said.

Visit the  National Foundation for Transplants for more information on Perkins and her planned fundraising events.