As the Liberal government advanced reforms to make costly prescription drugs cheaper for Canadians, resistance emerged from an unexpected source.
In the spring of 2019, Prime Minister Trudeau received a sternly-worded letter that expressed “concern” about a process that was “frustrating,” “infuriating,” “going over the cliff,” and which would lead to “unjustifiable” and “unfair” consequences.
The government, it concluded, should “reconsider” their reforms.
The letter wasn’t sent by a powerful pharmaceutical corporation—it was from groups who advocate on behalf of sick patients.
By the time the new regulations came into effect this summer, the government had indeed reconsidered. The reforms had been watered down so much they did little to curb the industry’s stranglehold on Canadians’ wallets—even though they had initially been seen as a first step towards a national pharmacare program.
“What began with a promise to protect Canadians,” the CBC reported, “ended with a commitment to support pharmaceutical companies.”
In the pharmaceutical lobby’s successful fightback against affordable medication, leaders of some of Canada’s most influential patient advocacy groups became their biggest, unlikely boosters.
Their stance reflected a dramatic transformation.
Once a vibrant grassroots social movement, patient groups in Canada have become a powerful cluster of corporate-influenced organizations, with leaders whose values, beliefs and ties align more closely with the private sector than the public interest.
For over two decades, aided by the same public relations firms that work for pharmaceutical companies, these industry-funded patient groups in Canada have brought the full weight of lobby tactics to bear on the government and the country’s drug agencies.
Patients critical of industry have been sidelined and patient communities divided, while an elite group of leaders—many with no direct experience with the serious diseases their groups represent—earn six-figure salaries and wield significant influence shaping policies that reverberate through the healthcare system.
Understanding this transformation—how patient groups were co-opted into fighting affordable medicine—is crucial to understanding the incredible grip that pharmaceutical companies have over government policy today.
“Not a lot of daylight” between patient groups and Big Pharma
Following their election in 2015, the federal Liberals appeared ready to tackle the long-festering cost of pharmaceuticals.
The following year, then Health Minister Jane Philpott announced the government would update the rules governing the federal regulator—the Patented Medicine Prices Review Board—that is mandated to protect Canadians from excessive drug costs and to encourage industry research investment in the country.
Since the price regulator’s founding over three decades ago, drug prices had only gone up and reinvestment in research had gone down.
The Liberals’ planned reforms, on the other hand, would save the country an estimated $13.2 billion on drug costs over the next decade.
The proposal was immensely popular. With one in four Canadians unable to afford prescription medications, almost ninety per cent of Canadians supported a universal pharmacare program. A system to cap excessive drug prices would be a stepping stone in that direction.
But the pharmaceutical lobby—at risk of losing $26 billion in profits over the next ten years, according to one report—was furious. They fought tooth and nail against the measures: they launched lawsuits, ran public relations campaigns, lobbied, and even dangled an apparent $1 billion bribe in front of the government.
Patient advocacy groups also joined in, calling for the process to be halted.
In the letter to Trudeau, jointly signed by Durhane Wong-Rieger, president and CEO of the Canadian Organization for Rare Disorders (CORD), and Martine Elias, the executive director of Myeloma Canada, they claimed that “lower prices will slow the introduction of new drugs to Canada.”
The two patient groups appeared on a steering committee established by the federal regulator to implement the reforms. But they were aligned with industry on most of the issues, the frustrated executive director of the regulator said publicly.
“There’s not a lot of daylight between their two positions,” he said.
Other advocacy group leaders—including a coalition of 13 patient groups called “Protect Our Access”— supported the push against the price reforms with a series of ads in the Hill Times in the spring of 2021, implying the reforms would cause treatment delays that prolonged patients’ suffering.
And when the pharmaceutical industry challenged the regulator’s proposed changes in both provincial and federal court, the Canadian Organization for Rare Disorders intervened to argue they would have a negative impact on patients.
In the federal court case, Innovative Medicines Canada—the industry’s top corporate lobby group—and 16 individual pharmaceutical companies charged that the proposed guidelines would be outside the authority of laws governing patents.
When the decision came down in 2020, the presiding judge said the Canadian Organization for Rare Disorders took “similar positions” to the pharmaceutical industry.
The judge dismissed their claims, saying the case was not an “opportunity to litigate policy issues” already discussed with the regulator in other venues.
But he ultimately sided with the pharmaceutical industry on several of their arguments.
It was a devastating blow to the Liberals’ planned reforms.
The “phantom prof” leading the charge
Among leaders in the patient advocacy world, Durhane Wong-Rieger of the Canadian Organization for Rare Disorders has gained particular acclaim—and condemnation.
She rose to prominence during the aftermath of the tainted blood scandal, becoming president of the Canadian Hemophilia Society and eventually leaving her university job as a psychology professor. (In a December 1998 profile in Chatelaine magazine, she would refer to herself as the “phantom prof.”)
As the Society advocated for reparations on behalf of patients who were victims of Canada’s notorious tainted blood scandal, she came to hold prominent roles as an advisor to the federal government.
Physician and MP Carolyn Bennett, now a Liberal cabinet minister, called her “the moral authority on the blood system.” Yet Wong-Rieger infuriated Justice Horace Krever, who headed the commission investigating Canada’s blood system, after she leaked sensitive confidential documents to the media. She defended the tactic as in the public interest, but according to the Chatelaine feature, Krever said there was “nothing to be gained, except some publicity.”
In 2008, identified as a “consumer advocate,” Wong-Rieger gave a keynote address on the role of consumer health advocates at a national conference in Australia.
The Australian health advocacy organization Healthy Skepticism protested Wong-Rieger’s “extensive ties to the pharmaceutical industry,” calling them “an example of a disturbing trend for pharmaceutical companies to use consumer advocates and consumer organizations to lobby covertly on their behalf.”
The group’s detailed dossier documented nine patient-related organizations in which Wong-Rieger held leadership positions and how they were linked to pharmaceutical and public relations companies. The policies she has advocated for include legalized drug ads aimed at consumers and strong patent protections for the industry.
Wong-Rieger did not reply to requests for an interview nor comment on written questions The Breach sent her.
Several heads of patient advocacy groups, like Wong-Rieger and Elias of Myeloma Canada, are not identified in their public biographies as patients suffering from life-threatening or debilitating illnesses.
When Elias was appointed Myeloma Canada’s Executive Director in 2018, a biography published on the group’s website said she came to the organization after many years working for two major pharmaceutical companies, GlaxoSmithKline and Janssen. “With Martine at the helm, we are now poised to propel Myeloma Canada to the next level,” says the press release.
Bill Swan, a health activist who has taken medications for severe asthma since childhood and completed a master’s degree on Canada’s lack of public pharmacare, says he has always been bothered by the number of people in leadership roles who have no personal experience of the diseases they represent.
He acknowledges that “one can’t expect everyone in a patient advocacy leadership role to have lived experience with the condition they represent.”
“But it does lead to a disconnect between the business of running an NGO and people living with the disease,” he says.
Barbara Mintzes, a former professor at the UBC who specializes in the study of pharmaceutical policy, now based at the University of Sydney, agrees.
She cites research findings where “sometimes you’ll see that current employees of companies are volunteers on the board of a patient group, which is outrageous.”
She says she’s also seen a pattern of former executives of a company running a patient group to which their former employee is providing sponsorship.
“You have to wonder, is the industry just getting another kick at the policy can, wearing a different hat? That’s certainly not how patient representation should be happening.”
“It’s fine for industry to represent itself, but that’s different from what patient groups should be doing,” she says.
A “lawless” world of Big Pharma funding
The last decades have seen private corporate money transform a grassroots sector.
In the 1980s, when AIDS activists demanded a say in policies impacting them, governments like Canada’s created opportunities for patient representatives to register their views.
Mintzes began her career in the non-profit health sector in the 1980s, working for the Vancouver Women’s Health Collective and DES Action, which represented women whose offspring were affected by the drug diethylstilbestrol.
At that time, grassroots health advocacy groups in Canada were eligible for small grants to support an office and a few paid staff. But as part of a broader trend, the government suddenly withdrew these subsidies to organizations often critical of public policies.
“The government even pushed people to go to the private sector for money,” she recalls. “Yet that happened without full consideration of what that means in terms of those groups being able to represent patients’ interests and not sponsors’ interests.”
By the late 1980s, pharmaceutical companies began offering money and policy advice to the proliferating array of grassroots patients’ organizations. Many of these groups were both cash-strapped and new to health policy.
“Pharma’s funding shifted swiftly from doctors to patients’ organizations, because the community was lawless,” Bill Swan says. “There’s no code of conduct so you can do what you want. You just give somebody some meds and a free trip to Las Vegas or whatever, and they’ll say whatever you want. Especially if they’re dealing with something that’s life-threatening, or makes life really difficult.”
As the patient movement grew, activist leaders were divided over whether they could be both “pharma-partners” and free to criticize a corporate sponsor promoting a therapy that was ineffective, inferior to existing therapies, dangerous, or excessively priced.
Today there are close to 100 national patient advocacy groups representing specific diseases in Canada, with many more at the local and provincial levels.
A study last year conducted by Joel Lexchin, a professor emeritus at the York University Faculty of Health, found that 25 per cent of pharmaceutical companies belonging to IMC—the industry’s top lobby association—reported making 165 donations to 114 patient groups.
Only four companies specified the amount given and only five stated the purpose of the donation.
Mintzes says this funding generates obvious conflicts of interest.
“Having a patient group sponsored by a company that’s selling products, or producing new products and trying to get them reimbursed for that patient population, creates a conflict for the group between being able to fully represent members and patients, versus the interests of sponsors,” she says.
Bill Swan believes pharmaceutical companies strategically funded groups to co-opt the sector.
“They knew the game they were playing,” he suggests.
He was on the board of the patient group Asthma Canada and recalls, “early on, it seemed ok to take their money, which were designated ‘unrestricted educational grants.’ But as I got further in, the companies started asking for changes in the language of our documents and it became more oppressive. Basically, they knew that if you can get someone addicted to this kind of funding, they will do what you want. It’s like booze, it’s like cigarettes, it’s like crack.”
As an Asthma Canada board member, in August 2012 Swan attended a pharma-sponsored conference in Quebec City. “Soon after that I started to get the heebie-jeebies about it.”
He resigned from the board over a statement put out by an association of health charities. “They wanted us to adopt this statement, but it was so blatantly pro-industry that I just refused to sign and resigned. I couldn’t possibly be an honest broker if I took industry funding.”
In 2015, buoyed by the government’s stated commitment to a public pharmacare program, he started a group called Faces of Pharmacare, to tell the stories of people struggling with high drug prices.
The group’s website prominently displays an image that says “No Industry Funding.”
From grassroots to corporate-friendly: the transformation of CORD
Wong-Rieger’s organization did not always intervene on the side of pharmaceutical giants.
It began as a grassroots group run on a volunteer basis and led by people who suffered from rare disorders.
It was founded by Maureen Gaetz-Faubert, who lives with a rare connective tissue condition known as Ehlers-Danlos Syndrome. For years, doctors dismissed her fatigue and pain until, when she was 29, a geneticist recognized her problem.
Gaetz-Faubert realized that others must be suffering alone, so in 1987 she started the Lethbridge Society for Rare Disorders. With a volunteer staff of five and a small budget from donations and casinos, the Lethbridge Society for Rare Disorders collected information on thousands of uncommon conditions and answered as many as 80 queries a day from individuals, support groups, and doctors
After a decade, Gaetz-Faubert turned the group into a national umbrella organization, renaming it Canadian Organization for Rare Disorders.
It maintained independence from the pharmaceutical industry. Even though she was the organization’s lone part-time staffer, she turned down an offer of $50,000 from a drug company that wanted to advertise in the group’s newsletter because “it didn’t seem ethically right.”
For a decade, its achievements garnered admiring articles in the media and from health professionals.
Gaetz-Faubert has never spoken publicly about her painful departure from the organization, but agreed to go on the record for this article.
Hoping “to bring CORD to the next level,” Gaetz-Faubert reached out to Wong-Rieger, who had risen to prominence in the 1990s as a voice for victims of Canada’s tainted blood scandal.
She thought Wong-Rieger’s substantial knowledge of pharmaceutical policy would be a boon to CORD. “I’ve never believed I knew everything,” she told The Breach by phone. “But Durhane [Wong-Rieger] became president of the board and I was fired.”
Gaetz-Faubert was never given a reason for her termination. She hired a lawyer but chose not to sue for wrongful dismissal.
“Because I created CORD, it was like losing a baby,” she says. “It was devastating. But I decided to take a compassionate path. I didn’t start the organization to kill it.”
She left the rare disease community altogether in order to look after her own health, and today runs From Head to Heart, a project for mind-body healing.
Under Wong-Rieger’s leadership, CORD soon shifted its funding model and purpose, becoming corporate-friendly, less oriented to patient support, and more focused on advocacy.
A list of resources redirects people to organizations and databases that provide information and support to people with rare diseases.
With Wong-Rieger at the helm, CORD set up a Corporate Leaders Forum, a special membership category for corporations that, by September 2010, had signed up 26 pharmaceutical companies. The current website lists four levels of corporate membership based on the level of yearly donation, ranging from “Friend” ($2,500) to “Champion” ($25,000). The organization’s revenues top a million dollars a year.
Benefits of corporate membership, according to the website, include the opportunity to propose program initiatives, surveys and other projects for the consideration of CORD or its affiliate members.
Wong-Rieger did not reply to a question from the Breach about the total amount of corporate donations.
Canada “lagging behind” in transparency requirements
“Canada absolutely needs more transparency, and is lagging behind other countries by not having a transparency database,” says Barbara Mintzes, from her current office at the University of Sydney, in Australia.
Australia now has a database to which companies must report their payments to patient organizations, doctors and other health professionals. Pharmaceutical industry groups in the U.K. and Europe have similar mandatory databases.
In Canada, the industry lobby group for brand-name drug companies, Innovative Medicines Canada (IMC), has a voluntary guideline that states members “should” disclose their funding to stakeholders, but the industry group doesn’t track compliance or penalize companies that fail to disclose.
Patient groups in Canada are not required to declare their industry funding and pharmaceutical companies are not required to report groups to whom they give funds. According to Mintzes, federal legislation is sorely needed to expose the links that allow the industry to use these organizations to lobby covertly for its preferred policies.
The underlying goal of these patient groups has been to approve new drugs quickly, based on preliminary evidence, and to have these drugs funded from the public purse while dismissing concerns about prices as bureaucratic penny-pinching.
Some of these fast-tracked drugs, rushed to market to provide patients “hope,” have had lethal effects and had to be withdrawn. Others have had negligible therapeutic benefit to patients, but remain on the market, their exorbitant prices intact.
Another consequence has been the marginalization of grassroots patient advocacy, and the elevation of industry-tied patient group leaders, regularly cited by the media and consulted by the government.
The next fight over pharmacare
As a battle approaches over a long-promised national pharmacare plan, critics are warning that the industry-funded patient groups could be out in force again.
“We should look very carefully at what they did with the Patented Medicine Prices Review Board, and be ready for that with pharmacare, but worse,” Bill Swan says.
This time, he believes, the fight will unfold in many more jurisdictions, giving them “a lot more hooks.”
Already, some of the same arguments that industry-funded patient groups raised to oppose the price capping regulations have come up in their briefs and testimony submitted to the House of Commons Health Committee, which studied both pharmacare and improving access to rare disease medications.
“Cheaper is not always better,” declares the patient group Mood Disorders Society, in a June 2016 brief to the Committee that argued that the national formulary of a pharmacare plan “must include the newest and the best medications.”
But for Mintzes, the concern that the companies will just “take their ball and play elsewhere” if drug prices are reined in doesn’t stand up.
“The whole point of a national pharmacare plan is more access to medicines,” she says, pointing out that in countries like Australia there is no lack of new drugs being brought to market.
“It would really go against the interests of their members to advocate against national pharmacare,” she says. “It’s so much in patients’ interests, especially patients with chronic diseases, to have fully publicly accessible medicines that are available at an affordable price.”
But that may not stop them, Swan believes. Alongside Big Pharma, patient advocates “brought everything to bear” to beat back the price regulation reforms.
“So it’s gonna be a long-term fight for pharmacare.”