I was diagnosed with HIV in 1994 and given two years to live. I joined Canada’s amazing HIV activists and for the next 18 years worked with industry and governments to ensure access to HIV research trials and treatments as they became available. In 2015, I began working with the oncology community as a new generation of innovative treatments began to appear for that population.
I have no nostalgia for the devastating HIV years. In the wake of the COVID-19 pandemic, bad memories have come flooding back. The value of history as I see it is to learn something from it for the future. And to act on that knowledge. I have been inspired by the late UN Secretary General Dag Hammarskjold who said— ‘Never, for the sake of peace and quiet, deny your own experience or convictions’.
Recently I heard Dr. Anthony Fauci , Director of the U.S. National Institutes of Allergy and Infectious Disease (as he was in the HIV years as well) announce that a clinical trial of a COVID-19 treatment to reduce deaths and time to recovery called remdesivir has been so successful (within a very small cohort ) that the trial was stopped early and those on the placebo (no treatment) arm were given the drug. He said that doing anything else is unethical. He also announced that as a result all other COVID-19 trials now have a new standard of care.
I have a high regard for Dr. Fauci. His experience in the HIV epidemic taught him that when lives are at risk the risk is that of the patient not the system. As a result early access to potentially life saving treatments requires small trials of short duration, early trial stoppages where results show success and early access through compassionate access by manufacturers and conditional approvals for sale and reimbursement.
It was on that basis that the HIV community fought and won in 1996 for early patient access followed with real-world safety and effectiveness data later. We also ensured clear complete information through informed consent forms, so patients knew the risks and benefits of treatments that were in clinical trials. We demanded that treatments be offered on compassionate access and approved conditionally for sale and reimbursement convincing the federal department Health Canada to bring in conditional approval for sale provisions (called Notice of Compliance with Conditions NOC/C) with 24 not 48 week trial data. We also convinced the Ontario government to bring in the Trillium Programme for reimbursement.
We remained on high alert to ensure that the data of people with HIV was carefully protected and kept private. This will be an issue in my view, and those view of some experts with regards to COVID-19 patients.
I am certain that Dr. Fauci will continue to follow the playbook he developed during the HIV epidemic for his work on COVID-19.
What will happen in Canada?
Will Health Canada use the fast track NOC/C to get treatments for COVID-19 out to people quickly?
Will the federal pricing regulator, the Patented Medicine Pricing Review Board, decide the price is too high to let COVID-19 treatments and vaccines come into Canada?
Will the health technology assessment bodies in Canada including the Canadian Agency for Drugs and Technologies in Health (CADTH) that make funding recommendations to the public reimbursement plans decide not to recommend these treatments as not of “value” for public reimbursement or indeed maybe even refuse to review them because the trials are too small or were stopped early?
Will the public plan price negotiations body, the pan-Canadian Pharmaceutical Alliance, hold up access while negotiations take place?
I suspect these barriers will all be overcome in this pandemic somehow and with haste, as they should be.
What about the impact for the future of oncology treatments?
We have argued for a long time that with one of two people in Canada predicted to be diagnosed with cancer in their lifetime, many of whom will die of this disease, this is an epidemic for Canada.
Of course, I am not in any way suggesting that this compares with the unprecedented devastation and broad ranging impact of COVID-19 globally or even domestically on our economy, our healthcare system and our daily lives on a population basis.
Cancer is one of the very serious and broad ranging health problems for Canadians and around the world. We should take the lessons of how research, prevention, treatments, vaccines and all other aspects of this pandemic are being handled and insist that the best practices we learn are implemented in oncology and beyond. If we can do it for this deadly disease why can’t we do it for cancer?
The philosopher Kierkegaard wrote that “Life is best understood backward but must be lived forward.” Hopefully, learnings from those of us with some experience in the rear view mirror of life can help us more strategic and more compassionate health policy decisions for the future.
Louise Binder is a lawyer and one of Canada’s leading health patient advocates. She cofounded the Canadian Treatment Action Council (CTAC) in 1996 which advocated for better access to HIV treatments and quality care. Louise is presently Health Policy Consultant for the Save Your Skin Foundation. Louise has received an Honorary Doctorate of Laws from her alma mater Queen’s Law School, the Order of Ontario and two Queen Elizabeth II medals.