How Much Would You Pay to Stay Alive? Read This Woman’s aHUS Story

According to CBC, Marie-Eve Chainey was on dialysis six out of seven days a week. For 15 years, this was her life.

It was a necessary feat to control her atypical hemolytic uremic syndrome (aHUS) diagnosis.

AHUS causes blood clots and leads to kidney failure. It appeared that dialysis would be necessary for the rest of Marie-Eve’s life.

But then a medicine came along. Marie-Eve was put on Soliris. The drug controlled the blood clots, and she’s now eligible for a kidney transplant.

The problem? The drug costs $750,000 a year.

Say what?? Source:

While she hasn’t had to pay that amount out of pocket, the pure thought of anyone paying the sum outrages her. The cost of the drug has been covered by the government, at least for now. But Marie-Eve is fearful that they will deny her coverage. She has to reapply every six months for assistance with the bill.

And she suspects she’ll have to be on Soliris for the rest of her life.

The company who makes the drug, Alexion Pharmaceuticals, says the cost was set by normal protocol, followed regulatory guidelines, and was approved for sale. The price hasn’t changed in the eight years it’s been on the market.

But others argue that the drug should only cost a few hundred dollars to produce. Therefore charging such an outrageous amount is largely immoral. Alexion argues the drug cost billions during development phases, warranting its cost.

Even so, shouldn’t the $750,000 price tag have covered the development costs by now? What other costs are being considered when justifying its continued cost?

Marie-Eve wants to know. So does the Patented Medicine Prices Review Board (PMPRB), an independent group dedicated to making healthcare affordable for the patients who need it most. The group should issue a statement soon, and if it places Alexion at fault, they will be forced to change the price and pay back excess revenue.

Stay tuned for an update on PMPRB’s decision and what the future will look like for atypical hemolytic uremic syndrome patients.

Read more about Marie-Eve’s story by clicking here.

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