Another chapter to the kidney transplant story

By: Natalie Shelton

If I achieved what I had hoped to, I wrote a rather heart-warming front-page article a few weeks ago about JoAnne Porter donating a kidney to her fiancé, Don Altis.

There’s much more to their story, and I have been struggling with how to package for readers another aspect of their ordeal. I wasn’t sure I could write an objective companion article because quite frankly, I am disturbed about Don’s experiences with dialysis centers and with how Medicare covers a dialysis patient compared to a transplant patient.

Dialysis centers

Don was self-employed when he suffered kidney failure, and he said he was told his only option was to sign up for Medicare to pay for costly dialysis treatments. Medicare allows patients to receive coverage specifically because of kidney failure, no matter their financial status.

It was a good answer at the time. Don showed me his invoices for dialysis services, which cost him about $22,000 a month.

Because he was on dialysis with Medicare picking up most of the tab, Don assumed he was on “the list” to receive a kidney. After a few months passed, he asked when he might receive a kidney. He learned he had never been in line to get one. When he was on home dialysis, he was given phone numbers in case he wanted a transplant, but no one followed up with him or gave him any encouragement to pursue a transplant.

Don has a theory as to why no one told him to seek a transplant. He thinks it is in for-profit dialysis centers’ best financial interests to receive money from Medicare. In fact, when he inquired about a kidney transplant, someone at the dialysis center he went to asked, “Why would you want a kidney when you’re doing so well on dialysis?”

As I researched to corroborate Don’s claim, I happened upon an article in The Boston Globe from October 2006 on how dialysis centers’ method for using a certain drug called Epogen was costing the federal government as much as $537 million annually “while generating additional profits for its manufacturer and clinics.” Don’s dialysis center was part of one of the two for-profit chains mentioned.

The article also said that “critics say the industry is motivated by profits.” One patient was quoted as saying he was a “cash cow” for his dialysis center. Another patient said that “taxpayers are paying the freight.”

Medicare’s catch-22

Don soon learned there was a bit of a catch-22 to getting a kidney transplant. After a transplant, patients must take immunosuppressive drugs for the rest of their lives to reduce the risk of their bodies rejecting the new kidney after the transplant.

However, “if you only have Medicare because of kidney failure, your immunosuppressive drugs are only covered for 36 months after the month of the transplant,” Medicare’s Web site says.

In essence, if Don had chosen to continue dialysis for the rest of his life, the government would have picked up his monthly dialysis tab until he died. But because he chose a kidney transplant, his Medicare coverage will end three years after the transplant.

Don will now have to pay for immunosuppressive drugs, which currently cost him about $4,000 a month but may go up to about $5,300 because of a medication adjustment. If he were disabled or over age 65, his Medicare coverage would continue.

Don’s dialysis would have continued to cost the government $264,000 a year, and his immunosuppressive drugs now cost a maximum of $63,600 a year. He’s choosing a cheaper option — an option that gives him a better quality of life — and the government is penalizing him.

A Midwest Transplant Network spokeswoman said the Medicare guidelines were in place with the thinking that if a patient was on dialysis, that person would be considered disabled. But if a patient had received a transplant three years ago, that line of thinking goes, then the person was probably able to go back to work and get insurance coverage. She said the Midwest Transplant Network did not have an official opinion on the on the issue.

I’m not so sure a person who has received a transplant could fall in such black-and-white categories. If you’ve had a transplant, that could mean you have other serious health issues. And would an insurance company cover such an expensive pre-existing condition? I just don’t know.

I’ve read that a lot of people who have had transplants have to cut corners to pay for their immunosuppressive drugs once their Medicare coverage stops, necessitating a new transplant. From what I can gather, Medicare will pay for that person to go on dialysis again and will pay for a second transplant, another practice that is costing Medicare even more.

In 2005, the latest of several federal efforts failed to pass legislation to extend Medicare coverage for those who’ve had kidney transplants. The National Kidney Foundation favors such legislation.

I’m not sure how we all can help Don and other transplant recipients on Medicare. Contacting our federal legislators might help.