There's a health crisis unfolding in Ohio, Michigan, and nationwide, with people's lives hanging in the balance. Kidney transplant patients must have anti-rejection medication to keep their transplanted organ, but 13abc has found they often can't afford it. 13abc health specialist Susan Ross Wells has been investigating this no-win scenario that has prompted a local woman to launch a campaign to help.
On its face, what we discovered seems unbelievable: kidney disease patients can get money for the transplants they need, but after they have a new kidney, they find limitations on obtaining the medication required to keep the kidney from being rejected.
"He died of a brain hemorrhage, and but, I think he knew, ya' know, it was.... the dialysis was rough on him.. I think in the end he just gave up."
Vickey Grunden's precious pictures and loving memories of her son Michael are all she has left. Sick with kidney disease his whole life, Michael received transplants... three times.
"In America when you are transplanted with a kidney, whether its live or deceased, you only get Medicare insurance for three years," says Susan Rees, who assisted with Michael's care.
Then you have to have private insurance, or pay full price for very expensive anti-rejection medicines. Michael and his family didn't have the money. He wound up back on dialysis and died four years ago. He was only 22 years old. Today's economy makes surviving kidney disease even more difficult. As people lose their jobs, they lose the ability to pay for their care.
"They're gonna do the same thing we would which are borrow money from friends and family, charge up the credit cards, its really after we've sort of done everything we can that we're gonna reach out for help," says Dr. Silas Norman, a Transplant Nephrologist at the University of Michigan.
We talked with several kidney transplant recipients about the dilemma, including Kyle Stevenson.
"Of course that weighs heavily on my mind," says Kyle. "Will I be able to find a job? Will I be able to get insurance? My fiance is a teacher. She has her music teaching degree and she is unemployed."
"Its in the back of my mind because when that three years runs up, so do my pills and it'd be a shame to waste this gift of life that i got," says another transplant recipient, Robby Rariden.
Keep in mind, these patients have already had expensive transplant surgery. The point is, Medicare doesn't pay for anti-rejection medication after three years, to ensure the transplant succeeds. So, private insurance becomes essential. Progress leaped forward in 2004, when Susan Rees founded Toledo's "Options Post Transplant, or OPT for a New Start". The idea: help kidney recipients, many of whom have been sick all their lives, to become educated, skilled and employable, so they can get insurance to cover the cost of their anti-rejection drugs.
"They've always been accountable to a dialysis machine, but now they're accountable to their school and to me," says Rees.
She says since OPT was founded, with the help of grant money and donations, over 36 students in our region have entered college or other training programs. We heard how the program has directly impacted their lives and goals for the future.
"I just started my third year. I'm at Mott and I'm going for nursing," says kidney recipient Kayla Douglas.
"The experience alone is overwhelming. Its really incredible... words can't even explain, says Donell Smith."
"I can't explain how grateful I am to be able to go to college," says Julie Anderson, "I always wanted to go, and I knew I would, but I didn't know how I'd get there."
"I have two sons," says kidney recipient Angela Chance, "So I need to be around for them, so its very important that I do this."
A transplant coordinator at University of Toledo Medical Center for years, Susan Rees remembers when Michael rejected that kidney and she was called to the clinic.
"Susan, there he was sitting crying. He couldn't afford his medications. It wasn't because he didn't wanna take them, he just plain could not afford them. I remember walking out of that clinic and thinking what am i going to do? This is a problem not just here in Northwest Ohio, this is nationwide. Think about how many Michaels are suffering from this every day that are dying, wanting to live, and they're dying. Dialysis costs about 80-thousand-dollars year. Immunosuppression drugs cost about 25- thousand a year. Wouldn't it be better for the taxpayers to pay life-long immunosuppression costs?"
There's been an attempt in Washington to get these medicines covered. Legislation has been introduced in both the House and senate, and there's some reason for optimism.
"We are attracting bipartisan support for it and we're hopeful that we can get something enacted if not this year then next year," says Troy Zimmerman, the Vice President for Government Relations for the National Kidney Foundation."
Meanwhile, 90-thousand people are on the list waiting for a kidney. Susan Rees says they're transplanting 17-thousand a year, but 800 of those will lose their kidney because they can't afford the drugs.
"That list is only going to get bigger," says Rees. "Its never going to get any smaller. We're going to continue to have people die every day unless we find a way to sustain these kidneys."
According to the National Kidney Foundation, Medicare stepped in in the first place to address kidney disease in the 1970's, when people had kidney failure and insurance wasn't covering dialysis. As for the OPT students: they're hopeful their educations will pay off. Some will find out relatively soon. Four of them will graduate in May.