Thank you Globe & Mail Health Reporter Kelly Grant for maintaining a focus on the effective Cystic Fibrosis drug Trikafta. We the miscoded owe you a debt of gratitude. How to price this virtual cure is a perplexing problem. One the one hand, the drug works, at a genetic level, enabling the small (approx. 4,000) number of Canadians with CF to lead more productive lives by contributing more than just a health burden to society. On the other hand, the drug is far too expensive.

If Wall Street darling Vertex Pharmaceuticals is charging provinces its full $306,000 annual list price, or thereabouts, and whether it is Canadians or their public and private health plans paying, the charge is cruel and steep from my biased point of view. Life is cruel, but as Grant has previously reported, the associated manufacturing cost is just $5,000 per year. That means the Rate of Profit (profit / cost) x 100 is 61.2 times. To clarify, that’s sort of like 100% markup times 30. Canada’s Patented Medical Review Board compiled a list of allowable pharmaceutical markups on the manufacturers’ cost ranging between 5% and 18%.

In the first few years following Boston-based Vertex’s release of Trikafta, and before PM Justin Trudeau’s Health Ministry caved, deciding Canadians would pay the vast majority of the company’s exorbitant profit demand, the company was making so much money it had resorted to share buybacks. Stock repurchases, reducing the number of outstanding shares, is action a company may take when there is an inordinate excess of funds available. In the case of Trikafta, that means Vertex is charging individuals six times more for a lifesaving drug than the average Canadian could ever expect to afford with their salary. What price life?

Argentina began licensing a generic form of Trikafta-predecessor Orkambi in 2019 after Vertex failed to patent the medication there. And the generic formulations of Trikafta’s constituent drugs elexacaftor, tezacaftor and ivacaftor together are priced at $4,000 monthly, a significant reduction to the name brand’s $27,000. A year ago, Vertex announced anticipated annual CF-related revenue of close to $10 billion, which we know is primarily profit, from what is a tiny customer base. It’s hoped Argentina will remain a symbol for hope for a more equitable world, and destination for buyers clubs.

It’s true, there is a corresponding decrease in hospitalization costs. In fact, the cost decrease looks surprisingly like Trikafta’s total end cost. In the early 2000s, soon after landing a corporate librarian position with AT&T Canada, I spent three months continuously admitted. If we assume $4,000 a day to be admitted, as Toronto’s Sunnybrook Hospital does, that’s $360,000. I wouldn’t be surprised if in developing a pricing strategy, Vertex chose to look at the potential reduction in hospitalization. Long admissions at Toronto’s St. Michael’s Hospital, under the life-saving care of Doctor and Professor Diana Elizabeth Tullis and her Adult CF Team located within the institution’s Respirology Department occurred repeatedly. Because of their expertise, and love of my partner Susan, I’m making a contribution as an adult even now that I’m no longer able to function as a salaried employee that shows up at work daily.

Giving back meaningfully was critical to feelings of self-worth because Canadians have given me so much. Just this year, my second non-fiction book about Ontario’s longterm covert textbook censorship of Baby Boomer and Generation X public school textbooks was released as Canadian Mockingbird: Exposing Censorship and Textbook-Mediated Social Engineering. Instead of going to work, I write. And as anyone who has read stories here on Art & Commodity by myself or Jamaican writer and philosopher Yannick Pessoa know, we’re writing for the people.

There are more cures on their way. How much compensation is due will continue to confuse. The science of genetic medicine is really just beginning. I remember several other people with CF who paid the ultimate price over the approximate thirty-five years since May 1989 when Canadian Dr. Lap-Chee Tsui, at Toronto’s Hospital for Sick Children, and Francis S. Collins at the University of Michigan⎯also the 16th Director of the National Institutes of Health and current Science Advisor to the President⎯isolated the gene responsible for causing CF.

In April 2024 Chinese researchers, led by Dr. Yin Hao, at Shanghai’s Changzheng Hospital announced that after a decade of research they had cured a patient of their type 2 diabetes by re-engineering their own stem cells harvested from the patient’s pancreas. Whereas Cystic Fibrosis Canada listed 4,400 Canadians living with CF in 2022, there are thought to be close to four million Canadians over one year-of-age to suffer from diabetes, and over 400 million worldwide.

How to pay for this cure is one question that arises immediately, quickly followed by what cost. What happens to insulin manufacturers, and last generation’s cure, is another. With the new cure, the patient gets new cells to produce insulin on their own rather than a drug.

The politics of drug pricing plays a role in Presidential politics, just like it plays a role in people’s lives. In the case of Cystic Fibrosis, for me there are many other drugs that continued to impact my health after I began using Trikafta.

Over the years friends have suggested trying this or that medication or vitamin, and sometimes they have been effective. Or, I have scoured the FDA’s drug database for what I could find. At least the 2x daily half-hour inhaled treatments, followed by lung percussion to clear the airways, have ceased.

And drugs aren’t the only solution. Once a family physician also suggested I think outside my drug box, telling  me “you will live longer if you move somewhere warmer,” although he wouldn’t write it down. Shortly thereafter I moved to Florida for the winters. He was correct. The hospital admissions ended immediately, even before Trikafta. Only one more short stay since 2017. My specialist described the relocation as providing “health stability.” I’ve often wondered if Canada can provide $300,000 for pharma care, could it be indicating to people with Cystic Fibrosis that there is a clinical benefit to sunshine, moderate temperatures and seawater.