Paying to Live: Pricey transplants put spotlight on cost of living with disease and recovery

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Monday, Sept. 23, 2019
News 12 at 6 O’Clock/NBC at 7

The drugs Shelia Reeves must take to stay alive before her kidney transplant are staggering. (Source: WRDW)

AUGUSTA, GA (WRDW/WAGT) – The organ transplant list at Augusta University currently had 891 people waiting for vital organs. While they wait, those people are crunching the numbers for what their health will cost them.

That gift comes with a high price even with insurance.

If Shelia Reeves had one wish, it would be for more time. Reeves has lupus and it's attacking her kidneys. She's been on the waiting list for a kidney for over four years.

“I went through the surgery for dialysis and was on dialysis for like a month and a half until my body just couldn't take the surgeries and dialysis,” Reeves said.

So now, she has to get rid of all the dialysis supplies she bought. They can't be returned or even donated.

Reeves’ only option is now a transplant. Since she's running out of time, her family started looking at options for a living donor and found her daughter is a match.

“The biggest surprise was the money that's involved,” Reeves said. “I thought once you have a donor, it's pretty much, when does this process start? But, it's not a fast process.”

Take Medicare for example. With most plans, you pay your deductible, then you pay 20 percent of the costs. But 20 percent is a lot when you're talking about hundreds of thousands of dollars.

In 2017, Kaiser Health estimated the average cost for a kidney transplant, the pre-care, the post-care, the drugs -- all said and done – at over $400,000. If you need a new liver? Over $800,000. And if you need more than one organ, the priciest surgeries, like heart and lung transplants can cost up to $2.5 million. Twenty percent of that is $500,000.

“I worry about the money,” Reeves said. “You still have to do daily living, household expenses.”

Once you get a transplant, patients have to take anti-rejection drugs -- typically for life. Those can run up to $2,500 a month. If you can't prove you'll be able to pay for them, transplant hospitals can deny your surgery. You'll get a letter like a patient up in Michigan received that said, “You are not a candidate for a heart transplant at this time due to needing a more secure plan for immunosupressive medication coverage. The committee is recommending a fundraising effort of $10,000.”

Shelia's Medicare will cover some but not all of the cost for those pricey drugs, which is why her doctors referred her to a non-profit that will help match what she raises if she can raise $10,000.

But raising that kind of cash when some days you can barely raise yourself out of bed, can feel like an impossible task.

“I miss working,” Reeves said. “A lot of people just say, ‘I wish I didn't have to work and could just stay home.’ Never. I was never that type of person. I've been working since I was 15.”

It brings the reality into focus. You have to pay to live. It's a hard pill to swallow -- even harder than all the pills needed to maintain care as someone with Lupus.

“My family, my grandkids, my husband -- we've been married over 25 years,” Reeves said. “I want a little more time to be with them.”

We haven't found any transplant program that accepts uninsured patients. Here's a surprising twist: we found if your kidney problems are what allowed you to qualify for Medicare in the first place, you are booted off of Medicare three years after your transplant.

But remember pricey those drugs are usually for life.

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