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Treatment for genetic disorder costly endeavor

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A Cummins retiree didn’t mind the monthly half-hour drive from his home in Nashville to the Indiana Blood Center in Columbus.

About eight years ago, Randy Bartlett was diagnosed with hemochromatosis, a disorder that causes the body to absorb excess amounts of iron from food.

Left unchecked, the condition can lead to liver cancer, cirrhosis or other serious illnesses.

Fortunately for Bartlett, and most others diagnosed with the genetic disorder, there is a treatment that is simple and effective.

Phlebotomy, the same procedure used for blood donation, reduces the excess iron before it is stored in the body’s organs.

Bartlett, 63, came to the Indiana Blood Center location on National Road for the procedure every six weeks, which was done at no charge.

Then about a year ago, he was told the Blood Center would no longer provide the service.

“They said they made the decision that because they weren’t able to use the blood any more. They could use their money better for other things,” Bartlett said. “They say they can’t use my blood, but every time I pick up the paper, they say they need blood.”

Tammy Rigney, a blood collection supervisor at the Columbus location of the Indiana Blood Center, explained why the procedure, called therapeutic phlebotomy, was discontinued there.

“Ten years ago, we never processed therapeutic donors,” Rigney said. “Then, a few years ago we entered into an agreement that we would start processing them for no charge, but a certain percentage had to ... be able to be transfused to others. We never reached that percentage, however, and it became a very costly thing for us.”

Bartlett said he doesn’t understand why his blood can’t be used.

“What I’ve got, you can’t get because it’s a hereditary thing,” Bartlett said. “I feel like they are grouping me in with people who have (a communicable disease).”

Bartlett now has to go to Columbus Regional Hospital for the therapeutic phlebotomy and must pay for the procedure. His insurance covers

80 percent of the $180 cost once his deductible is satisfied, but it still costs him more than $30 every six weeks.

Bartlett said he is fortunate to have good insurance coverage, but others are not as lucky. He said for those with high-deductible insurance, which is becoming increasingly common, the expense can be burdensome.

During the early stages of treatment, people with the condition often require the procedure at least once a week until the iron level is reduced.

Rigney said she did not have statistics on the number of therapeutic phlebotomy patients who received treatment before the procedure was discontinued, but it wasn’t a large number. She said it is unfortunate Indiana Blood Center can no longer provide the service, but as a nonprofit, cost-efficiency is a priority.

“We have to focus on our primary goal, which is blood donation,” Rigney said.

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