Once a global movement, pharmaceutical giants are now fighting affordable medicine alongside co-opted patient advocacy groups. Resistance to the government’s efforts to lower the cost of expensive prescription medications for Canadians came from an unexpected place.
Prime Minister Trudeau was sent a letter in the spring of 2019 that was strongly written and expressed “alarm” about a process that was “frustrating,” “infuriating,” “heading over the cliff,” and that would have “unjustifiable” and “unfair” repercussions.
It came to the conclusion that the administration should “reconsider” its measures. The letter was written by organizations that support sick individuals, not by a big pharmaceutical company.
The administration had actually changed its mind by the time the new rules went into force this summer. Even though the measures had been initially viewed as a first step towards a national pharmacare scheme, they had been so severely watered down that they did little to break the industry’s grasp on Canadians’ wallets.
According to the CBC, “what started with a promise to safeguard Canadians, ended with a resolve to promote pharmaceutical firms.”
Leaders of some of Canada’s most powerful patient advocacy organizations turned out to be their largest, most unlikely supporters in the pharmaceutical lobby’s successful fight against accessible medicine.
Their posture revealed a significant change.
Patient groups in Canada, which were once a thriving grassroots social movement, have evolved into a potent conglomerate of corporations with leaders who have greater ties to the commercial sector than to the public good.
These industry-funded patient groups in Canada have used full-throated lobbying strategies to influence the government and the nation’s drug regulators for more than two decades, assisted by the same public relations firms that work for pharmaceutical companies. Digital Agency reports.
While a select group of leaders, many of whom lack personal experience with the serious diseases their groups represent, earn six-figure salaries and have significant influence over shaping policies that have repercussions throughout the healthcare system, patients who are critical of the industry have been marginalized and patient communities divided.
Understanding this shift—how patient organizations were persuaded to oppose accessible healthcare—is essential to comprehending the enormous influence that pharmaceutical companies currently wield over public policy.
“Not so much bright things” exists between patients and pharma companies
The federals seemed prepared to address the long-standing issue of pharmaceutical costs.
The government would update the regulations governing the federal regulator—the Patented Medicine Prices Review Board—whose mandate is to safeguard Canadians from exorbitant drug costs and to promote industry research investment in the nation—the following year, according to then-Health Minister Jane Philpott.
Drug prices have increased steadily since the establishment of the pricing regulator more than 30 years ago, but research funding has decreased.
On the other side, the Liberals’ proposed changes would save the nation over the following ten years an estimated $13.2 billion on prescription expenses.
The idea was very well received. Nearly 90% of Canadians backed a universal pharmacare scheme since one in four of them could not afford prescription prescriptions. A system to restrict inflated drug costs would be a step in that direction.
However, the pharmaceutical lobby was incensed because they could lose $26 billion in profits over the following ten years. They waged a valiant battle against the measures, filing lawsuits, conducting public relations. Patient advocacy organizations joined the chorus and demanded that the procedure be stopped.
The executive director of Myeloma Canada, Martine Elias, and Durhane Wong-Rieger, president and CEO of the Canadian Organization for Rare Disorders (CORD), wrote to Trudeau jointly stating that “reduced prices will hinder the introduction of new therapies to Canada.”
The two patient organizations participated in a steering committee that the government regulator set up to carry out the measures. But, as the regulator’s irate executive director openly stated, they were in agreement with business on the majority of the issues. There isn’t much space between their two places, he observed.
Other advocacy organization leaders supported the effort against the price reforms with a series of ads in the Hill Times in the spring of 2021, claiming the revisions would result in treatment delays that prolonged patients’ suffering, including a coalition of 13 patient groups called “Protect Our Access.”
The Canadian Organization for Rare Disorders also intervened to argue that the proposed modifications would be detrimental to patients when the pharmaceutical industry contested them in provincial and federal courts.
Innovative Medicines Canada, the leading corporate lobbying organization for the sector, and 16 distinct pharmaceutical companies argued that the proposed rules would violate the patent laws in the federal court case.
The sitting court stated that the Canadian Organization for Rare Disorders adopted “identical stances” to the pharmaceutical industry when the verdict was rendered in 2020. The judge rejected their arguments, stating that there was no “opportunity to dispute policy problems” that had already been brought up with the regulator in other forums.
However, he finally agreed with the pharmaceutical sector on a number of their points. It dealt the Liberals’ proposed changes a fatal blow.
How pharma corporations influenced consumer groups to maintain inflated medicine pricing in Canada
Leading the charge is the “ghost”
Leaders in the field of patient advocacy have praised and decried Durhane Wong-Rieger of the Canadian Organization for Rare Disorders in particular.
She gained notoriety in the wake of the tainted blood scandal, rising to the position of president of the Canadian Hemophilia Society before eventually resigning from her position as a psychology professor at a university. (She would refer to herself as the “phantom prof.” in a December 1998 profile in Chatelaine magazine.) She attained key positions as a federal government advisor while the Society fought for compensation on behalf of people who had been hurt by Canada’s infamous tainted blood issue.
The now-Liberal cabinet minister and physician Carolyn Bennett referred to her as “the moral authority on the blood system.” But once Wong-Rieger exposed private, sensitive data to the public, Justice Horace Krever, who oversaw the panel looking into Canada’s blood system, became enraged. According to the Chatelaine story, Krever claimed there was “nothing to gain, except some exposure,” even though she had supported the strategy as being in the public interest.
At a national conference in Australia in 2008, Wong-Rieger, who characterized herself as a “consumer advocate,” gave a keynote speech on the function of consumer health advocates.
Wong-“extensive Rieger’s ties to the pharmaceutical industry,” which the Australian health advocacy group Healthy Skepticism objected to, were cited as “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 thorough dossier included nine patient-related organizations where Wong-Rieger held executive roles along with their connections to pharmaceutical and PR firms. Legalized medication advertisements aimed at consumers and robust patent protections for the sector are among the things she has backed.
Many leaders of patient advocacy organizations, including Wong-Rieger and Elias of Myeloma Canada, do not identify themselves as patients with serious or disabling illnesses in their public biographies.
A biography posted on the organization’s website at the time of Elias’ appointment as Myeloma Canada’s Executive Director in 2018 stated that she had spent several years working for two significant pharmaceutical firms, GlaxoSmithKline and Janssen. According to the press release, “With Martine at the helm, we are now positioned to drive Myeloma Canada to the next level.” The Breach questioned Wong-Rieger about whether she had ever been a patient herself, but got no response.
Health activist Bill Swan, who completed a master’s degree on Canada’s lack of public pharmacare and has taken medications for severe asthma since childhood, says he has always been troubled by the number of people in leadership positions who have no personal experience with the diseases they represent.
One cannot expect everyone serving in a leadership position for patient advocacy to have first-hand experience with the ailment they are advocating for, he admits. However, he adds, “it does result in a separation between the business of running an NGO and those suffering from the condition.”
In agreement is Barbara Mintzes, a former UBC professor and expert in the study of pharmaceutical policy who is currently based at the University of Sydney. She cites data showing that it is “outrageous” to see some current employees of firms serve as volunteers on the boards of patient organizations. She claims to have observed a pattern whereby former firm executives support a patient group that is being headed by one of their former employees.
You have to question: “Is the industry simply trying to kick the policy can while donning a different hat?” That most definitely is not the proper way to represent patients. According to her, patient groups shouldn’t promote themselves in the same way that industry does.
How pharma corporations influenced consumer groups to maintain inflated medicine pricing in Canada
A world where Big Pharma controls the laws
Over the past few decades, a grassroots sector has been transformed by private corporate funding. Governments like Canada’s developed chances for patient representatives to submit their views in the 1980s when AIDS campaigners demanded a say in policies that affected them.
In the 1980s, Mintzes started her career working for the non-profit organizations DES Action and the Vancouver Women’s Health Collective, which supported mothers whose children had been harmed by the medication diethylstilbestrol.
At that time, Canadian grassroots health advocacy organizations qualified for modest funds to support an office and a small number of paid employees. But as part of a larger pattern, the government abruptly cut off these funding to groups that frequently oppose governmental policy.
She recalls that the government even encouraged people to seek financial assistance from the business sector. “Yet that occurred without full consideration of what it meant in terms of such organisations’ capacity to represent patients’ interests as opposed to sponsors’ interests,” the author writes.
Pharmaceutical firms started providing funding and policy guidance to the growing number of grassroots patient organizations in the late 1980s. Many of these organizations were financially challenged and uninitiated in health policy.
According to Bill Swan, “Pharma’s funding quickly migrated from doctors to patients’ organizations since the society was anarchic.” You can act anyway you choose because there is no code of conduct. Give someone some prescription medication and a free trip to Las Vegas or something like, and they’ll say whatever you want. especially if they are dealing with a serious health issue or other challenging situation.
As the patient movement evolved, there was disagreement among activist leaders about whether they could be “pharma-partners” and still be free to condemn a corporate sponsor who was endorsing a therapy that was ineffective, subpar to existing medicines, risky, or overly expensive.
There are currently close to 100 national patient advocacy organizations in Canada that represent various diseases, and there are many more at the municipal and provincial levels. In a survey completed last year, Joel Lexchin, an emeritus professor at the York University Faculty of Health, discovered that 25% of pharmaceutical corporations that are members of IMC—the leading lobbying organization for the sector—reported giving 165 donations to 114 patient groups.
Only four businesses made the gift amount and five businesses made the donation’s purpose explicit. According to Mintzes, this funding produces blatant conflicts of interest. She claims that having a patient association funded by a business that sells products or develops new products while attempting to get paid for that patient population puts the group’s ability to fully represent members and patients at odds with the interests of sponsors.
According to Bill Swan, pharmaceutical companies strategically financed organizations to control the industry. He asserts that “they were aware of the game they were playing.”
“Early on, it felt alright to receive their money, which were designated as ‘unrestricted educational grants,'” he recalls of his time serving on the board of the patient organization Asthma Canada. But as I progressed, the businesses started requesting revisions to the wording of our documents, and it got more onerous. In essence, they understood that if you can make someone dependent on this kind of funding, they will do everything you ask of them. It’s comparable to alcohol, cigarettes, and crack.
How pharma corporations influenced consumer groups to maintain inflated medicine pricing in Canada
Swan attended a seminar in Quebec City in August 2012 as a board member of Asthma Canada. “Shortly after that, I started to feel uneasy about it.” A health charity association’s comments prompted his resignation from the board. They wanted us to adopt this statement, but I simply refused to sign it and resigned because it was so obviously pro-industry. If I accepted industry financing, I couldn’t possible be an honest broker.
In 2015, he founded a group called Faces of Pharmacare to share the experiences of those who were dealing with high prescription prices, encouraged by the government’s declared commitment to a public pharmacare scheme. The phrase “No Industry Funding” is prominently displayed on the group’s website.
Between being populistic to corporate-friendly: CORD
Wong-group Rieger’s underwent a transition, but not always on the side of the big pharmaceutical companies. It started as a volunteer-driven grassroots organization run by individuals with rare diseases.
Maureen Gaetz-Faubert, who has the uncommon connective tissue disorder Ehlers-Danlos Syndrome, founded it. Before a geneticist identified her issue at age 29, doctors had long rejected her discomfort and weariness.
Gaetz-Faubert founded the Lethbridge Society for Rare Disorders in 1987 after realizing that others must be struggling alone. The Lethbridge Society for Rare Disorders, which had a small staff of five volunteers and was funded by donations and gambling, gathered details on more than 6,000 rare diseases and provided answers to up to 80 questions a day from patients, support organizations, and medical professionals.
After ten years, Gaetz-Faubert broadened the organization’s scope and transformed it into the Canadian Organization for Rare Disorders, a federation of similar organizations.
It kept its distance from the pharmaceutical sector. She declined a $50,000 offer from a medicine manufacturer that wanted to advertise in the group’s newsletter even though she was the only part-time employee of the organization because “it didn’t feel ethically correct.”
For ten years, both health experts and the media have praised its accomplishments. Gaetz-Faubert consented to speak on the record for this story despite never having talked in public about her difficult separation from the company. Gaetz-Faubert contacted Wong-Rieger, who had become well-known in the 1990s as a spokesperson for those affected by Canada’s tainted blood issue, in an effort “to bring CORD to the next level.”
She believed that Wong-in-depth Rieger’s expertise in drug policy would be beneficial to CORD. She told The Breach over the phone, “I’ve never thought I knew everything. But Durhane [Wong-Rieger] was elected board president, and I was let go. Gaetz-Faubert never received an explanation for why she was fired. She retained a lawyer, but she decided against filing a claim for unfair termination.
It was like losing a baby because I founded CORD, she claims. “It was terrible. But I made the choice to go the humanitarian route. I didn’t found the organization in order to destroy it.
She completely cut ties with the rare disease community to take care of her own health. Soon after Wong-Rieger took over as CEO, CORD changed its focus from patient support to advocacy, becoming more corporate-friendly in the process.
“Provide a strong shared voice to fight for health policy and a healthcare system that works for persons with rare disorders,” is the current mission statement of CORD. People can find organizations and databases that offer assistance and information to those with rare diseases by consulting a list of resources.
In September 2010, 26 pharmaceutical companies had joined CORD’s Corporate Leaders Forum, which Wong-Rieger established as a special membership category for corporations. According to the annual donation amount, the current website includes four categories of corporate membership, ranging from “Friend” ($2,500) to “Champion” ($25,000). The company brings in more than $1 million annually.
According to the website, advantages of corporate participation include the chance to suggest program initiatives, surveys, and other projects for consideration by CORD or its associate members. The Breach inquired about Wong-response Rieger’s to the total amount of corporate donations.
Canada “tends to lag behind” in terms of openness demands in pharmaceutical sphere
Because it lacks a transparency database, Canada is falling behind other nations, according to Barbara Mintzes, who is currently working out of the University of Sydney in Australia. Companies must now declare their payments to patient organizations, physicians, and other healthcare professionals to a database in Australia. European and British pharmaceutical industry organisations have comparable required databases.
Innovative Medicines Canada (IMC), a brand-name drug industry advocacy group in Canada, has a voluntary policy stating that members “should” disclose their funding to stakeholders. However, the industry group doesn’t monitor compliance or sanction businesses who don’t disclose.
In Canada, neither patient organizations nor pharmaceutical corporations are required to disclose the organizations they have received financing from. Mintzes contends that urgent federal legislation is required to reveal the connections that permit the sector to surreptitiously advocate for its desired policies through the use of these organizations.
These patient groups’ overarching objectives have been to hasten the approval of new medications and to have the public fund them, while rejecting pricing concerns as the result of bureaucratic cost-cutting.
Some of these expedited medications that were hurried to market in an effort to give patients “hope” had fatal side effects and had to be discontinued. Others have provided patients with little therapeutic effect but continue to be sold at excessive costs.
Another effect has been the marginalization of patient activism at the grass-roots level and the promotion of industry-connected patient organization leaders, who are frequently quoted in the media and sought out by the government.
How pharma corporations influenced consumer groups to maintain inflated medicine pricing in Canada
The following pharmacare battle
Critics are expressing concern that industry-funded patient groups may once more be active as a fight over a long-promised national pharmaceutical plan looms. Bill Swan adds, “We should pay very close attention to what they did with the Patented Medicine Prices Review Board and prepare for that with pharmacare, but worse.”
He thinks there will be a lot more jurisdictions involved this time, giving them “a lot more hooks.” The House of Commons Health Committee, which looked at pharmacare and increasing access to pharmaceuticals for rare diseases, received briefs and testimony from industry-funded patient groups that included some of the same objections to the price capping legislation.
The patient group Mood Disorders Society stated in a June 2016 brief to the Committee that the national formulary of a pharmacare plan “must cover the newest and the greatest pharmaceuticals” that “cheaper is not necessarily better.”
However, Mintzes believes that the argument that if medicine prices are reduced, the businesses will simply “take their ball and play somewhere” is unfounded. More access to medications is the very objective of a national pharmacare program, she asserts, pointing out that there is never a shortage of new medications being introduced to the market in nations like Australia.
To argue against national pharmacare, she continues, “would truly go against the interests of their members.” The interests of patients, especially those with chronic conditions, are greatly served by having widely accessible medicines that are reasonably priced.
Swan thinks it might not be enough to deter them. Patient activists “bring everything to bear” alongside Big Pharma to defeat the pricing regulatory legislation. “So, the battle for pharmacare will be a protracted one.”
Source assisting on writing this article: Andromeda News
