Ottawa high jumper fighting province for drug coverage will get kidney transplant

Marie-Eve Chainey may have completed her final high jump on Sunday, but she still faces hurdles when it comes to getting funding for the medication that treats her rare blood disease.

The Ottawa woman has been competing for 20 years, but after she receives a kidney transplant this month from her aunt — which means she will no longer need daily dialysis treatments — she'll have to leave the sport behind.

She's been taking the expensive drug Soliris for her disease, and her drug coverage is currently approved for six months after her transplant. But even with a new kidney, Chainey said, she'll still have to repeatedly reapply to get those drug bills paid — bills that cost roughly $750,000 each year.

"Although I'm super happy about the transplant and excited that I won't have to [be on] dialysis anymore, I'll have the stress of knowing that — if I'm not covered for the medication — that it's a very high possibility that I will lose the transplant," she said Sunday afternoon.

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Both of Chainey's kidneys failed 15 years ago due to severe blood clots caused by atypical hemolytic-uremic syndrome (AHUS), a rare disease which affects less than 100 people in Canada.

AHUS causes the body to attack and destroy red blood cells, causing anemia, organ failure and ultimately death.

Ontario only covers Soliris, a drug that helps stop the progression of AHUS, on a case-by-case basis. The drug is part of a dispute between Canadian provinces and its U.S. manufacturer Alexion, which has refused to lower its prices.

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Chainey said Soliris has stabilized the progression of the disease to the point where she could have a kidney transplant. She said she'll have to keep taking the drug afterwards — and for the rest of her life — to keep the new organ healthy.

Possible final jump

Chainey competed in her final high jump event at the city's Terry Fox Stadium on Sunday, and was choked up as she explained the mix of feelings.

"I've been jumping for over 20 years. It's a big moment," she said. "I didn't expect [the end] to come this fast, and the only reason it's my last jump is because I'm going to have a kidney transplant in a week."

Chainey said her doctor has told her she'll have to stop jumping because of the nature of her procedure, although she doesn't completely rule out perhaps competing at a lower level at some point in the future.

"The transplant will be in the front of the abdomen, which would be really high risk for any damage to the new kidney transplant," she said.

Chainey said while the possible end of her sports career is bittersweet, the transplant — scheduled to take place in about a week — will give her a freedom she hasn't had for more than a decade and a half.

She'll be able to do things she hasn't been able to do in the last 15 years.-  Manon Desrochers, Marie-Eve Chainey's aunt and her kidney donor

"Having a transplant that works means I won't have to do dialysis everyday, means that I can travel more than two days at a time, means I can go home to see family, means I don't have to miss my friends' wedding," she said. "And [I'll] be able to eat and drink things that I want without having to count everything."

Chainey's maternal aunt Manon Desrochers is donating her kidney. Desrochers said she knew she was a match for her niece before she even took the test.

"Marie-Eve will have a better quality of life. She'll be able to do things she hasn't been able to do in the last 15 years. It's a gift, yes — but I think it's just the way it's supposed to be," Desrochers said in French.

"Even if I have to make some small compromises immediately after the surgery, [afterwards] my life will go back to normal. With one kidney, you can live well. But she'll have a much better life afterwards."