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Advocacy in Action: The Human Cost

John* has been taking Orkambi for the last two and a half years, starting as part of the clinical trial, rollover study and now through an extended care plan from the drug provider. While he is confident he has benefitted from the drug, he is concerned about the cost of the drug. These are his thoughts.

“My cystic fibrosis has been relatively stable over [my] time [on OrkambiTM] and I have had no exacerbations that have required hospitalization. For two months in the middle of this period, I had to discontinue OrkambiTM as a “washout” period in order to have another procedure unrelated to CF. During these two months, my lung function and general health declined markedly and, for the first time in my life, I was worried that cystic fibrosis would begin to seriously disrupt my life and plans for the future. However, after the washout period was over, I was able to recontinue OrkambiTM and my health steadily improved to the point of stability.

“It is very possible, even probable, that taking Orkambi has protected me from exacerbations and therefore hospitalizations.”

“OrkambiTM is not, however, a panacea in the treatment of CF. It does not replace my other treatments nor decrease the amount of time I have to spend in disease treatment, which is substantial. I do believe that OrkambiTM has been a key component in the stabilization of my CF over the last two and a half years. It is very possible, even probable, that taking OrkambiTM has protected me from exacerbations and therefore hospitalizations. Above the raw cost of potential hospitalizations to the healthcare system, there is the additional human cost passed on to me of missing work and being away from my family. Hopefully these are also points of consideration when deciding whether to cover OrkambiTM through the public drug plans.”


I understand that there are difficult choices to make in deciding to provide public coverage for expensive pharmaceuticals which impact small numbers of people. I would urge decision-makers to consider the human costs for us as CF patients in any cost-benefit calculations on OrkambiTM. I would further urge a strong consideration of a national pharmaceutical plan, if only for the purpose of vastly increased purchasing power in dealings with drug providers. Though I strongly recommend the inclusion of OrkambiTM in Canada’s public drug plans for the purpose of preventing disease progression in patients with CF, I would not add this drug at any cost. A simple economic analysis shows that the amount the drug provider is proposing to charge for Orkambi is unrelated by any practical measure to the research and development costs invested to create the drug. Drug providers are given further negotiating strength by Canada’s decision to, rightly, provide largely socialized medicine to her citizens; drug companies ask for higher prices when they know public pressure will be placed on governments.

The best decision would be to add OrkambiTM to a harmonized or nationalized formulary and negotiate a reasonable price of purchase with the drug provider. This will both improve the lives of patients with CF and ensure that other patient populations with rare diseases, to be covered by orphan drugs in development, can be cared for in the future.”

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*Names have been changed.