Maria Klimenko considers the extent to which the price of innovative treatments like CASGEVY, a type of gene therapy, should reflect not just the cost of development, but also their broader societal impact — and the public healthcare system’s ability to provide equitable access.

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CASGEVY is a ground-breaking, one-time human-genome editing therapy recently approved to treat sickle cell disease. It is the first treatment of its kind in Canada to use CRISPR/Cas-9 genome editing technology, marking a major milestone in precision medicine. It was approved by Health Canada in October 2024, following earlier regulatory approvals in the UK (December 2023) and the USA (January 2024). At approximately $2.8 million CAD per patient, CASGEVY offers the promise of a cure. But that promise comes with a price tag that puts it out of reach for most and risks straining a publicly funded system designed to deliver care based on need, not income.

Faced with this cost, the Canadian Drug Expert Committee has recommended to the Canadian Drug Association (CDA) that CASGEVY should only be publicly funded if its price is significantly reduced by a minimum of 39%, still amounting to a staggering cost of $1.7 million CAD per patient. This stance reflects much more than a budgetary concern—it speaks to a deeper ethical dilemma: how to reconcile the promise of life-changing therapies with equity and sustainability in a publicly funded healthcare system. The answer matters not only for CASGEVY but for the future of Canada’s healthcare system.

Photo Credit: Ed Uthman/flickr. Image Description: Sickle cell blood cells.

Pharmaceutical companies often justify high prices by pointing to the enormous cost of research, development, and regulatory approval. These costs are real – developing gene therapies like CASGEVY takes years of clinical trials, stringent testing, and specialized manufacturing. The price likely reflects both the high development costs and the long-term cost savings associated with a potential cure. But this narrative is incomplete. It ignores the fact that innovation is rarely a private endeavour. Publicly funded universities, research institutions, hospitals, and government grants all contribute to the science that underpins these breakthroughs. Taxpayers often fund the early stages of research long before a therapy enters the marketplace.

So, when it comes to pricing, the question isn’t just about recouping investment—it’s about recognizing the role of public infrastructure in innovation and ensuring that the public is not priced out of the results it helped create.

Canada’s healthcare system is built on the principle of universal access: everyone should receive care based on need, not ability to pay. This model relies on collective funding and responsible allocation of resources (among other things). But universal access is only meaningful if the system itself remains financially sustainable. When a single treatment like CASGEVY threatens to consume over one million dollars per patient, it forces a reallocation of resources that could affect thousands of others. And it’s not just the financial cost; the CDA and the Canadian Agency for Drugs and Technologies in Health (CADTH) also recognize that CASGEVY is highly resource-intensive — requiring specialized staff, hospital beds, and transplant centres, all of which are already in limited supply. CADTH noted that while CASGEVY shows clinical promise, its cost-effectiveness is limited under the current price structure. By insisting on a lower price, the CDA may be taking a stand for the integrity of the entire system. It’s a reminder that we cannot support innovation at the expense of equity.

Gene therapies are often celebrated for their transformative potential, but we must also ask: who gets to benefit? Without public coverage, the only people who can access CASGEVY will be those with private insurance or personal wealth. In the case of sickle cell disease, it’s a condition that disproportionately affects marginalized communities. Roughly 6,500 Canadians live with sickle cell disease and about 40% reside in the country’s lowest‑income neighbourhoods, with the vast majority being Black. This group often experiences racism in their interactions with the healthcare system, such as longer emergency-room wait times, undertreatment of pain, and stigmatization as “drug seeking”. The high cost of CASGEVY risks reinforcing these existing health inequities. It sends a message that innovation is available, but only for those who can afford it. That is incompatible with the principles of a public healthcare system and with any meaningful definition of justice in medicine. By demanding a price reduction, Canada isn’t turning away from innovation. Perhaps it’s ensuring that medical progress doesn’t deepen social divides.

In a publicly funded system, value must be measured not only by scientific achievement, but by public benefit. We must move beyond pricing models that reflect only the cost of development or future market potential. Instead, pricing should also account for the societal value of universal access, long-term sustainability, and equitable distribution of care. For example, in the UK, the listed price for a single dose of CASGEVY is £1.65 million (approximately $2.09 million CAD), yet it was made available to the NHS at a negotiated discount following a commercial agreement. This suggests that alternative pricing models are possible. Canada’s healthcare system isn’t saying no to CASGEVY, it’s saying yes—but not at any cost. Perhaps it’s a call to rethink how we define value in medicine, not just in dollars, but in justice as well.

The question of how to price innovative treatments like CASGEVY is ultimately a question of social values. Should medicine reward only those who can afford it, or should it reflect a shared commitment to collective health? Should Health Canada approve gene editing technologies prior to resolving (predictable and significant) concerns about fairness in access and burdens on already burdened health care systems?

Life-saving treatments should be accessible to all, not just the select few. The CDA’s recommendation to reduce the price of CASGEVY reflects a crucial ethical judgment—that innovation must be encouraged, but not at the cost of fairness, equity, or the sustainability of the healthcare system. If we want to build a future where medical breakthroughs are truly transformative, we must ensure they are not just invented for the public—but available to it.

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Maria Klimenko is at the Centre for Health Care Ethics and the Department of Health Sciences, Lakehead University, Thunder Bay, Ontario.