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Health

Pharmacare won’t help Canadians with rare disorders

Published

1 year ago

6 minute read

From the MacDonald Laurier Institute

By Nigel Rawson and John Adams

Canadians with rare disorders will be even worse off if NDP’s parliamentary blackmail works

Last month the federal NDP convention in Hamilton voted unanimously to force the Liberals to introduce a single-payer universal pharmacare program or see the current “confidence-and-supply” deal canceled. Will universal government-run pharmacare benefit Canadians with rare disorders? We fear not.

Canadians with such disorders are already disadvantaged compared with sufferers in other countries. Fewer specialized drugs are launched in Canada than in the United States and Europe. Those that are get approval for marketing about a year, on average, after they do there.

That’s not because Health Canada takes longer to review new medicines. The process takes about the same time in the three places. Rather, delayed approval is likely due to manufacturers submitting later to Health Canada because federal, provincial and territorial hostility towards the industry has made our biopharmaceutical market less attractive.

Approval doesn’t mean government drug plans will pay for a drug, however. Further government-created barriers impact all Canadians, but particularly those with rare disorders who want access to novel drugs for their unmet or poorly met health needs. As a consequence, what gets listed in government drug plans varies widely, leading to a postal code lottery.

In a set of articles published over the summer by the Macdonald-Laurier Institute, we discuss the several obstacles patients and their families face as they try to gain access to new or expensive innovative therapies. They include: the lack of federal incentives for developers to submit new medicines to Health Canada; health technology assessment that is neither accountable, independent nor transparent and makes recommendations about which drugs to cover in public drug plans to governments; and price negotiations between government drug plans and manufacturers.

Even when drug developers clear these government-created barriers, public drug plans are under no obligation to add the approved medicines to their benefit lists. Too often governments focus only on drug costs and ignore the broader benefits effective drugs can bring, not only to the health and well-being of patients and their families, but also to other parts of the health system, to the economy and to society at large. If a new drug reduces doctor or emergency visits or hospitalizations or helps a person get back to work, those benefits typically are ignored by our drug assessment system.

The federal government made matters worse over the past six years by planning to drastically reduce drug prices by regulatory order, not negotiation. This caused considerable uncertainty among developers, resulting in even fewer new drugs being submitted for marketing approval here than in the U.S. and EU.

Proponents plainly want a lowest-common-denominator government-run public plan that would crowd out private plans, which over two-thirds of Canadians currently rely on for drug access.

Despite the federal government committing $1.5 billion over three years to “increase access to, and affordability of, effective drugs for rare diseases to improve the health of patients across Canada,” its initiative is not comprehensive. So far, Canada has neither a government-endorsed national rare disorder strategy nor an Orphan Drug Act providing incentives to developers to launch orphan medicines in Canada. Most other developed countries have both.

Patients’ organizations have stepped in where governments have failed to act and proposed a Canadian strategy that would include incentives and funding to encourage developers to launch drugs in this country and cut through the barriers we have described to provide timely access to the many innovative treatments on the research horizon. For example, access to breakthrough drugs could be allowed as soon as Health Canada says they are safe and effective, even as other administrative boxes are checked and prices negotiated. Other countries use this approach.

Canadians afflicted with any of the 11,000 or so known rare disorders have significant unmet needs. Fewer than five per cent have any treatment beyond symptom relief or palliative care. The last thing these people need is for governments to ration innovative drugs even more than they already do or to force even deeper price cuts from drug developers in order to pay for universal pharmacare that covers only basic medicines.

Canadians with rare disorders almost certainly will be even worse off if the NDP’s parliamentary blackmail works.

Nigel Rawson is an affiliate scholar with the Canadian Health Policy Institute and a senior fellow with the Macdonald-Laurier Institute, as is John Adams, co-founder and CEO of Canadian PKU and Allied Disorders Inc.

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RFK Jr: There’s no medical justification for vaccinating one-day-old babies for Hepatitis B

Health

RFK Jr: There’s no medical justification for vaccinating one-day-old babies for Hepatitis B

Published on February 22, 2025

By

From LifeSiteNews

By Doug Mainwaring

‘Hepatitis B is sexually transmitted from having sex with multiple partners in gay sex, or from sex workers, or intravenous drug use,’ explained the new HHS head. ‘Why would you give that to a baby?’

In a widely-viewed video shared on social media, the new U.S. Secretary of Health and Human Services (HHS), Robert F. Kennedy, Jr., asserted that the majority of vaccines — including those he sees as unjustifiably being mandated for infants — have been developed primarily to create profits for Big Pharma.    

“Most of the vaccines after 1989 were added not for public health reasons but for pharmaceutical profit reasons,” said Kennedy.    

“Why are we vaccinating one-day-old babies for Hepatitis B?” he asked. 

“Hepatitis B is sexually transmitted from having sex with multiple partners in gay sex, or from sex workers, or intravenous drug use,” he said, reemphasizing, “Why would you give that to a baby?” 

According to Kennedy, Pharmaceutical giant Merck was directed by both the FDA (Food and Drug Administration) and the CDC (Centers for Disease Control and Prevention) to develop the Hepatitis B vaccine for “those vulnerable populations.”    

He explained that when those populations showed little interest in the vaccine, “Merck went back to the agencies and said ‘You told us to develop this vaccine, but nobody’s buying it.”  

“The CDC said, ‘Don’t worry’” recounted Kennedy, “we’ll just recommend it for children and we’ll force everybody to buy it.”     

“So, that’s how it got on the [childhood vaccine] schedule,” he said, declaring, “There’s no medical justification.”   

There’s no downstream liability, there’s no front-end safety testing – that saves them a quarter billion dollars – and there’s no marketing and advertising costs, because the federal government is ordering 78 million school kids to take that vaccine every year.  

What better product could you have? And so there was a gold rush to add all these new vaccines to the schedule that we don’t need. Most of these vaccines are unnecessary. Many of them are for diseases that are not even casually contagious.  

It was a gold rush, because if you get onto that schedule, it’s a billion dollars a year for your company.  

And in many cases, NIH is earning the royalties. 

According to Kennedy, more obscene than the huge profits being horded by Big Pharma are the vast number of negative side-effects from all those untested vaccines. 

“Neurological diseases” have “exploded,” he said. 

“ADHD, sleep disorders, language delays, ASD, autism, Tourette’s syndrome, ticks, narcolepsy. These are all things that I never heard of,” said Kennedy. “Autism went from one in 10,000 in my generation according to CDC data to one in every 34 kids today.” 

Kennedy is known for vehemently opposing vaccines without proper knowledge for those taking them, a stance he adopted after the mothers of vaccine-injured children implored him to look into the research linking thimerosal to neurological injuries, including autism. He went on to found Children’s Health Defense, an organization with the stated mission of “ending childhood health epidemics by eliminating toxic exposure,” largely through vaccines. 

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Addictions

BC overhauls safer supply program in response to widespread pharmacy scam

Published on February 21, 2025

By

By Alexandra Keeler

A B.C. pharmacy scam investigation has led the provincial government to return to a witnessed consumption model for safer supply

More than 60 pharmacies across B.C. are alleged to have participated in a kickback scheme linked to safer supply drugs, according to a provincial report released Feb. 19.

On Feb. 5, the BC Conservatives leaked a report that showed the findings of an internal investigation by the B.C. Ministry of Health. That investigation showed dozens of pharmacies were filling prescriptions patients did not require in order to overbill the government. These safer supply drugs were then diverted onto the black market.

After the report was leaked, the province committed to ending take-home safer supply models, which allow users to take hydromorphone pills home in bottles. Instead, it will require drug users to consume prescribed opioids in a witnessed program, under the oversight of a medical professional.

Gregory Sword, whose 14-year-old daughter Kamilah died in August 2022 after taking a hydromorphone pill that had been diverted from B.C.’s safer supply program, expressed outrage over the report’s findings.

“This is so frustrating to hear that [pharmacies] were making money off this program and causing more drugs [to flood] the street,” Sword told Canadian Affairs on Feb. 20.

The investigation found that pharmacies exploited B.C.’s Frequency of Dispensing policy to maximize billings. To take advantage of dispensing fees, pharmacies incentivized clients to fill prescriptions they did not require by offering them cash or rewards. Some of those clients then sold the drugs on the black market. Pharmacies earned up to $11,000 per patient a year.

“I’m positive that [the B.C. government has] known this for a long time and only made this decision when the public became aware and the scrutiny was high,” said Elenore Sturko, Conservative MLA for Surrey-Cloverdale, who released the leaked report in a statement on Feb. 5.

“As much as I am really disappointed in how long it’s taken for this decision to be made, I am also happy that this has happened,” she said.

The health ministry said it is investigating the implicated pharmacies. Those that are confirmed to have been involved could have their licenses suspended, be referred to law enforcement or become ineligible to participate in PharmaCare, the provincial program that helps residents cover the costs of prescription drugs.

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Witnessed dosing

The leaked report says that “a significant portion of the opioids being freely prescribed by doctors and pharmacists are not being consumed by their intended recipients.” It also says “prescribed alternatives are trafficked provincially, nationally and internationally.”

Critics of the safer supply program say it enables addiction, while supporters say it reduces overdoses.

Sword, Kamilah’s father, is suing the provincial and federal governments, arguing B.C.’s safer supply program made it possible for youth such as his daughter to access drugs.

Madison, Kamilah’s best friend, also became addicted to opioids dispensed through safer supply programs. Madison was just 15 when she first encountered “dillies” — hydromorphone pills dispensed through safer supply, but widely available on the streets. She developed a tolerance that led her to fentanyl.

“I do know for sure that some pharmacies and doctors were aware of the diversion,” Madison’s mother Beth told Canadian Affairs on Feb. 20.

“When I first realized what my daughter was taking and how she was getting it, I phoned the pharmacy and the doctor on the label of the pill bottle to inform them that the patient was selling their hydromorphone,” Beth said.

Masha Krupp, an Ottawa mother who has a son enrolled in a safer supply program, has said the safer supply program in her city is similarly flawed. Canadian Affairs previously reported on this program, which is run by Recovery Care’s Ottawa-based harm reduction clinics.

“I read about the B.C. pharmacy scheme and wasn’t surprised,” Krupp told Canadian Affairs on Feb. 20. Krupp lost a daughter to methadone toxicity while she was in an addiction treatment program at Recovery Care.

“Three years [after starting safer supply], my son is still using fentanyl, crack cocaine and methadone, despite being with Dr. [Charles] Breau and with Recovery Care for over three years,” Krupp testified before the House of Commons Standing Committee on Health on Oct. 22, 2024.

Krupp has been vocal about the dangers of dispensing large quantities of opioids without proper oversight, arguing many patients sell their prescriptions to buy stronger street drugs.

“You can’t give addicts 28 pills and say, ‘Oh here you go,’” she said in her testimony. “They sell for three dollars a pop on the street.”

Krupp has also advocated for witnessed consumption of safer supply medications, arguing supervised dosing would prevent diversion and ensure proper oversight of pharmacies.

“I had talked about witnessed dosing for safe supply when I appeared before the parliamentary health committee last October,” she told Canadian Affairs this week.

“I’m grateful that finally … this decision has been made to return to a witness program,” said Sturko, the B.C. MLA.

In 2020, B.C. implemented a witnessed consumption model to ensure safer supply opioids were consumed as prescribed and to reduce diversion. In 2021, the province switched to take-home models. Its stated aim was to expand access, save lives and ease pressure on health-care facilities during the pandemic.

“You’re really fighting against a group of people … working within the bureaucracy of [the B.C. NDP] government … who have been making efforts to work towards the legalization of drugs and, in doing that, have looked only for opportunities to bolster their arguments for their position, instead of examining their approach in a balanced way,” said Sturko.

“These are foreseeable outcomes when you do not put proper safeguards in place and when you completely ignore all indications of negative impacts.”

Sword also believes some drug policies fail to prioritize the safety of vulnerable individuals.

“Greed is the ultimate evil in society and this just proves it,” he said. “We don’t care about these drugs getting into the wrong hands as long as I get my money.”

This article was produced through the Breaking Needles Fellowship Program, which provided a grant to Canadian Affairs, a digital media outlet, to fund journalism exploring addiction and crime in Canada. Articles produced through the Fellowship are co-published by Break The Needle and Canadian Affairs.

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