The Unfair Coverage for Rare Disease Drugs

Lilia Zaharieva was a University of Victoria student in her early late twenties when she found herself losing half her leg function due to cystic fibrosis. Walking from class to class and participating in student events became almost impossible.

To learn more about cystic fibrosis (CF), click here.

Worst of all, she was given a two to five year life expectancy. Lilia was already tying up loose ends in her life and ready to transition out of this world.

However, a drug called Orkambi changed her life. On September 2016, her UVic student health plan provided the drug, which comes in at $250,000 and treats cystic fibrosis at the root of the problem, rather than simply suppressing the symptoms.

But every miracle came with its challenges. She soon learned that Orkambi would no longer be covered under the UVic student health plan. Luckily she was not alone, and the UVic Student Society voted to buy her a final month’s supply of the drug. The company gave her an extra 90-day free supply before coverage ended.

Stories like this are happening all the time. In the case of 23-year-old Shantee Anaquod, she became the first person in B.C. to get her coverage approved for Soliris which is used to treat hemolytic uremic syndrome (aHUS). Solaris used to be covered in B.C., but now is only covered on a case-by-case basis. Orkambi, which treats her cystic fibrosis, is off the table.

Both of these cases are perfect examples as to how unfair and uneven the decision making process is for rare disease drugs in B.C. Shantee has the drugs she needs to survive and Lilia does not.

Lilia was relieved to hear that Shantee was getting her medication, but she still waits for her own case to get resolved.

Durham Wong-Rieger is the president of the Canadian Organization for Rare Disorders who agrees that the system doesn’t make any sense. He is a harsh advocate against the Common Drug Review’s thought process for making recommendations on drug coverage.

“No one knows what the terms of reference for the community are, nobody really knows who is on the committee, and nobody knows how to find it — even the committee members themselves have said that they are not happy with the fact that there’s so little known about it,” said Wong-Rieger in an interview with CBC News.

As for Lilia, she will continue the fight for coverage, “until her last breath.”

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