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Health

Pharmacare won’t help Canadians with rare disorders

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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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Alberta

Early Success: 33 Nurse Practitioners already working independently across Alberta

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Nurse practitioners expand primary care access

The Alberta government’s Nurse Practitioner Primary Care program is showing early signs of success, with 33 nurse practitioners already practising independently in communities across the province.

Alberta’s government is committed to strengthening Alberta’s primary health care system, recognizing that innovative approaches are essential to improving access. To further this commitment, the Nurse Practitioner Primary Care Program was launched in April, allowing nurse practitioners to practise comprehensive patient care autonomously, either by operating their own practices or working independently within existing primary care settings.

Since being announced, the program has garnered a promising response. A total of 67 applications have been submitted, with 56 approved. Of those, 33 nurse practitioners are now practising autonomously in communities throughout Alberta, including in rural locations such as Beaverlodge, Coaldale, Cold Lake, Consort, Morley, Picture Butte, Three Hills, Two Hills, Vegreville and Vermilion.

“I am thrilled about the interest in this program, as nurse practitioners are a key part of the solution to provide Albertans with greater access to the primary health care services they need.”

Adriana LaGrange, Minister of Health

To participate in the program, nurse practitioners are required to commit to providing a set number of hours of medically necessary primary care services, maintain a panel size of at least 900 patients, offer after-hours access on weekends, evenings or holidays, and accept walk-in appointments until a panel size reaches 900 patients.

With 33 nurse practitioners practising independently, about 30,000 more Albertans will have access to the primary health care they need. Once the remaining 23 approved applicants begin practising, primary health care access will expand to almost 21,000 more Albertans.

“Enabling nurse practitioners to practise independently is great news for rural Alberta. This is one more way our government is ensuring communities will have access to the care they need, closer to home.”

Martin Long, parliamentary secretary for rural health

“Nurse practitioners are highly skilled health care professionals and an invaluable part of our health care system. The Nurse Practitioner Primary Care Program is the right step to ensuring all Albertans can receive care where and when they need it.”

Chelsae Petrovic, parliamentary secretary for health workforce engagement

“The NPAA wishes to thank the Alberta government for recognizing the vital role NPs play in the health care system. Nurse practitioners have long advocated to operate their own practices and are ready to meet the growing health care needs of Albertans. This initiative will ensure that more people receive the timely and comprehensive care they deserve.”

Jennifer Mador, president, Nurse Practitioner Association of Alberta

The Nurse Practitioner Primary Care program not only expands access to primary care services across the province but also enables nurse practitioners to practise to their full scope, providing another vital access point for Albertans to receive timely, high-quality care when and where they need it most.

Quick facts

  • Through the Nurse Practitioner Primary Care Program, nurse practitioners receive about 80 per cent of the compensation that fee-for-service family physicians earn for providing comprehensive primary care.
    • Compensation for nurse practitioners is determined based on panel size (the number of patients under their care) and the number of patient care hours provided.
  • Nurse practitioners have completed graduate studies and are regulated by the College of Registered Nurses of Alberta.
  • For the second consecutive year, a record number of registrants renewed their permits with the College of Registered Nurses of Alberta (CRNA) to continue practising nursing in Alberta.
    • There were more than 44,798 registrants and a 15 per cent increase in nurse practitioners.
  • Data from the Nurse Practitioner Primary Care Program show:
    • Nine applicants plan to work on First Nations reserves or Metis Settlements.
    • Parts of the province where nurse practitioners are practising: Calgary (12), Edmonton (five), central (six), north (three) and south (seven).
  • Participating nurse practitioners who practise in eligible communities for the Rural, Remote and Northern Program will be provided funding as an incentive to practise in rural or remote areas.
  • Participating nurse practitioners are also eligible for the Panel Management Support Program, which helps offset costs for physicians and nurse practitioners to provide comprehensive care as their patient panels grow.

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Addictions

BC Addictions Expert Questions Ties Between Safer Supply Advocates and For-Profit Companies

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By Liam Hunt

Canada’s safer supply programs are “selling people down the river,” says a leading medical expert in British Columbia. Dr. Julian Somers, director of the Centre for Applied Research in Mental Health and Addiction at Simon Fraser University, says that despite the thin evidence in support of these experimental programs, the BC government has aggressively expanded them—and retaliated against dissenting researchers.

Somers also, controversially, raises questions about doctors and former health officials who appear to have gravitated toward businesses involved in these programs. He notes that these connections warrant closer scrutiny to ensure public policies remain free from undue industry influence.

Safer supply programs claim to reduce overdoses and deaths by distributing free addictive drugs—typically 8-milligram tablets of hydromorphone, an opioid as potent as heroin—to dissuade addicts from accessing riskier street substances. Yet, a growing number of doctors say these programs are deeply misguided—and widely defrauded.

Ultimately, Somers argues, safer supply is exacerbating the country’s addiction crisis.

Somers opposed safer supply at its inception and openly criticized its nationwide expansion in 2020. He believes these programs perpetuate drug use and societal disconnection and fail to encourage users to make the mental and social changes needed to beat addiction. Worse yet, the safer supply movement seems rife with double standards that devalue the lives of poorer drug users. While working professionals are provided generous supports that prioritize recovery, disadvantaged Canadians are given “ineffective yet profitable” interventions, such as safer supply, that “convey no expectation that stopping substance use or overcoming addiction is a desirable or important goal.”

To better understand addiction, Somers created the Inter-Ministry Evaluation Database (IMED) in 2004, which, for the first time in BC’s history, connected disparate information—i.e. hospitalizations, incarceration rates—about vulnerable populations.

Throughout its existence, health experts used IMED’s data to create dozens of research projects and papers. It allowed Somers to conduct a multi-million-dollar randomized control trial (the “Vancouver at Home” study) that showed that scattering vulnerable people into regular apartments throughout the city, rather than warehousing them in a few buildings, leads to better outcomes at no additional cost.

In early 2021, Somers presented recommendations drawn from his analysis of the IMED to several leading officials in the B.C. government. He says that these officials gave a frosty reception to his ideas, which prioritized employment, rehabilitation, and social integration over easy access to drugs. Shortly afterwards, the government ordered him to immediately and permanently delete the IMED’s ministerial data.

Somers describes the order as a “devastating act of retaliation” and says that losing access to the IMED effectively ended his career as a researcher. “My lab can no longer do the research we were doing,” he noted, adding that public funding now goes exclusively toward projects sympathetic to safer supply. The B.C. government has since denied that its order was politically motivated.

In early 2022, the government of Alberta commissioned a team of researchers, led by Somers, to investigate the evidence base behind safer supply. They found that there was no empirical proof that the experiment works, and that harm reduction researchers often advocated for safer supply within their studies even if their data did not support such recommendations.

Somers says that, after these findings were published, his team was subjected to a smear campaign that was partially organized by the British Columbia Centre on Substance Use (BCCSU), a powerful pro-safer supply research organization with close ties to the B.C. government. The BCCSU has been instrumental in the expansion of safer supply and has produced studies and protocols in support of it, sometimes at the behest of the provincial government.

Somers is also concerned about the connections between some of safer supply’s key proponents and for-profit drug companies.

He notes that the BCCSU’s founding executive director, Dr. Evan Wood, became Chief Medical Officer at Numinus Wellness, a publicly traded psychedelic company, in 2020. Similarly, Dr. Perry Kendall, who also served as a BCCSU executive director, went on to found Fair Price Pharma, a now-defunct for-profit company that specializes in providing pharmaceutical heroin to high-risk drug users, the following year.

While these connections are not necessarily unethical, they do raise important questions about whether there is enough industry regulation to minimize potential conflicts of interest, whether they be real or perceived.

The BCCSU was also recently criticized in an editorial by Canadian Affairs, which noted that the organization had received funding from companies such as Shoppers Drug Mart and Tilray (a cannabis company). The editorial argued that influential addiction research organizations should not receive drug industry funding and reported that Alberta founded its own counterpart to the BCCSU in August, known as the Canadian Centre of Recovery Excellence, which is legally prohibited from accepting such sponsorships.

Already, private interests are betting on the likely expansion of safer supply programs. For instance, Safe Supply Streaming Co., a publicly traded venture capital firm, has advertised to potential investors that B.C.’s safer supply system could create a multi-billion-dollar annual market.

Somers believes that Canada needs more transparency regarding how for-profit companies may be directly or indirectly influencing policy makers: “We need to know exactly, to the dollar, how much of [harm reduction researchers’] operating budget is flowing from industry sources.”

Editor’s note: This story is published in syndication with Break The Needle and Western Standard.

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Dr. Julian M. Somers is director of the Centre for Applied Research in Mental Health and Addiction at Simon Fraser University. He was Director of the UBC Psychology Clinic, and past president of the BC Psychological Association. Liam Hunt is a contributing author to the Centre For Responsible Drug Policy in partnership with the Macdonald-Laurier Institute.

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