Peter Thurley:

Patient advocacy in Canada is broken

(Photo credit: Sharon McCutcheon via Pexels)

Where patients were formerly at the centre of cannabis advocacy, business has now become the primary overriding concern for those involved in the industry. Where medicine for sick people was previously paramount, commercially viable recreational products with higher profit margins have taken its place.

When I made the decision to step down from the board of directors at Canadians for Fair Access to Medical Marijuana (CFAMM) in December 2019, I did so because I felt like the voice of patients had become increasingly lost in the din of commerce and industry.

While patients were under no illusion cannabis companies would shift focus once the drug was legalized for adult use in 2018, many had hoped their licensed producers would remember their original customers, and at the very least, maintain the level of service and quality they were providing for patients. With the advent of legalization came hopes of pharmacy distribution and increased access to research resources, which many medical consumers thought might result in more efficient cannabis mail order and delivery systems.

And while some of these have materialized, a year and a half after cannabis became legal in Canada patients seem to have fewer affordable, quality legal options, despite the glut of products sitting in warehouses across the country.

Not all of these concerns belong to industry, of course, with the federal government laying an especially big egg on the taxation model, in what appears to be a successful bid to discourage medical sales, citing supposed patient fraud. Despite several protests, tens of thousands of emails, and hours of testimony before the House of Commons in Ottawa, Finance Canada pushed ahead in applying an excise tax on all THC-based cannabis products.

I don’t want to rehash old grievances, but I do want to point out that these moves meant patients had to put their energy into fighting policymakers on taxes instead of working with the government. Together, we could have developed a regulatory framework that allowed patients to choose the medicine they need, when they need it, while ensuring that the product remains safe.

The taxation fight exemplifies the larger problem—patients do not have the appropriate support from industry or government to make their concerns known and to offer suggestions on how to improve the system.

It’s long been the case that patients have to fight for every inch they take, and with a review of the medical program coming up shortly, few cannabis patients are prepared for the eventuality of losing a legal, stand-alone medical cannabis system.

Industry talk these days, at least the online chatter, is focused around company downsizing and c-suite exits. There is too much unsold product on the market, we’re told; the industry overhyped itself and set the expectations too high, and so it’s just coming back down to earth. Building projects have been halted and shareholders are becoming more risk-averse, wanting industry to produce on its extravagant promises before investing more. And while each of those shareholders has an important voice, most often left out of the mix is the fact that the end consumer is a patient, and cannabis is their medicine.

Even when things are tough-going for the industry, the patient-consumer still needs to access quality cannabis at reasonable prices.

None of this excuses the patient lobby efforts either. Disjointed and unorganized, patient groups have spent too much time fighting imaginary turf wars and not enough time helping the industry and government focus on their needs.

Instead of moving forward on important issues that all parties can agree on, like accessible pharmacy distribution and scientifically validated impaired driving laws, patient advocacy groups seem to be content to silo themselves. Some are focused on direct access, some are working on consumer lobbying, and still others are attempting policy development.

Of course, this organized work, best done through a professionally-run, registered charity, is challenging for patients to do alone. Advocacy cannot be done solely on a volunteer basis. Patients have such limited abilities, many living lives with chronic health conditions, that it means most have to rely on those who are healthy to do the basic, everyday work of running a non-profit organization. Building an organization committed to patients ensures that time and energy is focused on the ones who need medicine, not on furthering personal interests. Medical consumers need support on a variety of issues, and this requires organizational leadership to recognize healthy, competent professionals working full-time to help advance the interests of patients must be a part of a long-term public policy strategy.

All of this full-time lobbying on behalf of patients requires money—the great big purple elephant in the room. With the federal review of the medical program just around the corner, patients risk being left out in the cold now more than ever.

Let me be clear: just as patients (many of whom are reliant on government disability payments) are typically too sick to do their own lobbying, they also cannot self-fund their interests in Ottawa. The industry, despite the downturn it is experiencing, has a responsibility to support and invest in the work of lobbying. While corporate money must never determine patient policy direction, it is clear that without an industry-funded lobby, the medical program and all who depend on it will go the way of the dodo.

While I am grateful for my time on the board at CFAMM, I am deeply disappointed that the organization’s work has been unable to attract both human and financial capital, despite a wealth of talented people in the industry. While it is clear this lack of support says something about the nature of cannabis advocacy work, I believe it also says something important about our industry—in this business, when the going gets tough, people are expected to fend for themselves.

That’s not the cannabis community I was introduced to several years ago, and that’s certainly not the community that patients need going forward.

With the recent economic downturn, it’s imperative that we think not only of those who can afford premium or specialty products, but also of those on government assistance. While I remain hopeful that patient advocacy work can get back on track, it will require substantial investment in time, human resources, and money from healthy people across the industry. I trust we’re up for the challenge.