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Volunteer Advocate
cf insights cf insights

ADVOCACY IN ACTION: Updates on BC residents lose access to life-changing Cystic Fibrosis medication

Dear Friends,

I am writing to thank you for your support in my struggle to get coverage so that I can stay on the medicine that has changed my life: Orkambi. I have good news and bad news to share with you today.

While I don’t meet the criteria for the manufacturer’s compassionate care program – which is surprising since I have been on the drug and have good results – the good news is that I got a brief extension of coverage.

This means I have sixteen days of medicine left instead of just one.

The bad news, which I wish was good news, is that BC’s Health Minister, Adrian Dix, called me on Friday to tell me that:

  • Under no circumstances will BC Pharmacare cover Orkambi unless Vertex provides more evidence to CADTH, and receives a positive recommendation, despite the fact that there are challenges in trying to gain more evidence because CF is a rare disease and our numbers are small.

By CADTH’s own rules Vertex can’t present any more information because they will not accept anything unless it is from a randomized clinical trial, so even though Vertex may have more positive findings they are unable to present them to CADTH.

  • That BC has not gone against CADTH decisions in the past; that covering Orkambi would set a precedent. When I told him that BC recently did this with a Parkinson’s drug which, like Orkambi, also received a negative recommendation from CADTH, he said that it was different.

It’s not, and while it doesn’t work for everyone, it works for me. I have medical records to prove it.

It concerns me that our Health Minister doesn’t seem to know how our drug programs work, yet is making decisions about what drugs should and shouldn’t be covered for the citizens of BC. Other residents of BC should be concerned about this too.

  • That the problem lies with Vertex, not him, and that we should be asking them to lower the price. Until the price is lowered, it is up to them to pay for the drug, not his ministry.

Yet, he is unwilling to go to the table until Vertex brings new evidence and CADTH recommends that provinces should pay for the drug.

The CADTH decision in non-binding: all I want is to be able to stay on a drug that has already proven to improve my health, and my Minister of Health could help me do that if he wanted to. I appreciate that Canada’s Health Ministers need to work together to negotiate a better price, so why won’t my Health Minister do just that?

On a very personal note, I think I was in shock when he called me, out of the blue, late on a Friday to deliver this news. Even though the CF community has asked for a meeting with him, he thought that this was the best way to deliver this devastating news to me.

Being Canadian, I never thought I’d see the day when I couldn’t get the medicine that I need to live healthy and well, and I especially did not expect these words or actions from an NDP Health Minister whose party had the following in their recent election platform:

“Reducing the cost of prescription drugs: Health care that works for you includes being able to afford the medication your doctor prescribes. Under the BC Liberals, drug prices have risen and nearly one in five British Columbians report they cannot afford to take their medications as prescribed. Every day, people are forced to make unacceptable choices between paying for prescription drugs and putting food on the table.

  • We will ensure the Therapeutics Initiative has the resources it needs to do its job effectively, keeping drug costs down and patients safe.
  • We will work with the federal government towards a national pharmacare program and we will support efforts to bulk purchase medication, bringing costs down.
  • We will enhance support to British Columbians living with, and at risk of, diabetes and remove the age restriction on access to the insulin pump program for people over 25.”

Minister Dix signed off on our call by letting me know that he empathized with me as he lives with Type 1 diabetes. Maybe if he lived with CF I would have access to the medicine I need too.

Melissa Verleg, Wife and mother of two, Vernon, British Columbia

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