Canadians need Ottawa to work with the pharmaceutical industry, clinicians and patients to improve access to new medicines and vaccines, write Nigel Rawson and John Adams in the Financial Post. Below is an excerpt from the article which can be read in full here.
By Nigel Rawson and John Adams, January 19, 2021
Patrick Quinn, co-founder of the 2014 “Ice Bucket Challenge,” created to increase awareness of ALS (amyotrophic lateral sclerosis) and raise funds for research into new treatments, died of the unrelenting lethal disease on Nov. 22. He was just 37 years old.
ALS is diagnosed in about one in 50,000 people each year. It gradually paralyzes its victims as their brains cease communicating with their muscles. Sufferers lose the ability to walk, talk, eat, swallow and eventually breathe. ALS victims rarely live longer than five years after diagnosis. The wife of one of us (Adams) died of ALS in 2014.
Two drugs (riluzole and edaravone) have been approved for ALS in Canada. They are only moderately effective and do not stop the disease. Edaravone is only available because patients lobbied its Japanese developer to bring it to Canada. The Patented Medicine Prices Review Board (PMPRB), the federal tribunal that sets ceiling prices for new patented medicines, established an unacceptably low price for the drug. The manufacturer responded by surrendering its Canadian patent in order to escape the PMPRB’s bureaucratic hands — only patented medicines come under its control — and allow Canadians with ALS to get the drug. Giving up patent rights is a risky business practice and a troubling warning about medical research and innovation in Canada.
The day after Patrick Quinn’s death, the House of Commons Standing Committee on Health met to hear why the PMPRB wants more regulations, including: replacing higher-price countries with lower-price ones in its international comparisons; introducing economic tests to determine prices; and requiring manufacturers to report details of confidential rebates negotiated with public and private insurers.
The new regulations have the potential to require drastic reductions in drug prices, which will make Canada a much less attractive market for launching new medicines. The result will be significant delays in accessing new drugs — or even no access — because developers decide low price ceilings, together with complex health technology assessments and harsh price negotiations, are not worth the trouble.
Sixty-eight briefs from individuals, patients, manufacturers, unions and associations have been submitted to the Standing Committee regarding the new regulations. Full disclosure: we were involved in three.