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Results: 31 - 45 of 666
Sharon Batt
View Sharon Batt Profile
Sharon Batt
2021-06-04 13:31
Thank you, Mr. Chairman and committee members, for inviting us to present at these hearings.
Thirty years ago, four of us started Canada's first breast cancer advocacy group because we believed in the potential of these groups to support and promote the needs of patients. Unfortunately, in the mid-1990s the government withdrew funding from patient groups, and many turned to the pharmaceutical industry for support.
For the past 20 years, I have researched these partnerships, as have many others. A large body of evidence now exists to show they compromise the potential of groups to inform drug policy. The research shows that through financial support and social relationships the industry has captured a large segment of the global patient advocacy movement. By “captured”, I mean that these patient groups express a consistent narrative that aligns with industry interests. We now have two discourses on drug prices within the patient advocacy movement. This difference is starkly evident in the organizations that have intervened about the PMPRB regulations and guidelines.
We believe the new PMPRB regulations and the proposed guidelines will be effective tools to cap the constant upward spiral of drug prices that prevents increasing numbers of patients from gaining access to needed drugs. Excessively high prices distort the allocation of health resources. They threaten the sustainability of health care systems on which all patients depend. At issue in these guidelines are the rules that determine whether many Canadians can afford to pay for their prescription drugs.
Many reports over many decades have recognized that an effective universal health care plan must cover essential drugs, and recent polls show that 86% of Canadians support a national pharmacare plan. We are alarmed by the extent of opposition to the PMPRB by pharma-funded patient groups. Their voices are completely out of proportion to those of the independent patient groups, groups that work with low-income people and other civil society groups that support a national entirely public pharmacare program.
When the PMPRB revised and weakened the first version of its guidelines, we were dismayed. Was this pullback based on evidence or on the intense lobbying by the industry and patient advocacy groups? Drug policy analysts in all countries recognize that the pharmaceutical industry is pricing new drugs at whatever the market will bear. Many of these expensive drugs do not improve patients' survival or their quality of life. Some have been recalled because of the level of harm to patients.
Patient advocacy groups have a responsibility to press for reforms that will limit these harms to patients and threats to our health system. This is hard if you're in a partnership relationship with an industry that benefits from high prices. This is why Breast Cancer Action Quebec will not accept any funding from pharmaceutical companies, nor does any of the groups or advocates with whom we collaborate.
Canada needs transparency laws that will allow the public to examine the relationships the industry has cultivated with patient groups. We do know these relationships are extensive, not only in Canada but in all high-income countries. The industry strategies used to cultivate patient advocates, including paying for dinners, media training and unrestricted educational grants, have been used for decades to cultivate physicians. They work. They may even be more effective with patients than they are with physicians, given the vulnerability of patients and their more limited resources.
The new cystic fibrosis drug Trikafta and its precursor drugs are a flashpoint for much of the anger directed to the PMPRB. From the evidence we've seen, these new CF drugs are that rare product: a breakthrough treatment. We want Canadian CF patients to have them, but simply being an effective drug doesn't justify price gouging. Drugs are supposed to work. Otis Webb Brawley, the former chief medical officer of the American Cancer Society, argues that “patient groups get money from the drug and device companies because they...[make] claims so outrageous that even special interests dare not make them”. Some of the claims that cystic fibrosis and rare disease patients are making about the PMPRB fit that description. I refer to tweets like, “@DougPMPRB You are promoting the death and suffering of Canadian citizens and the blood is on your hands.” I also refer to the emotionally charged images in the ad series, “Stop changes to the PMPRB regulations”, which was sponsored by 13 patient organizations called “Protect Our Access”.
The PMPRB didn't block Vertex from bringing Trikafta to companies sooner; that was the company's decision. Notably, patient advocacy groups in other countries have challenged Vertex directly, as they should, and not their cash-strapped public health programs.
Patient charities supported by the pharmaceutical companies often develop financial assistance programs to help patients pay for the excessively high-priced drugs. This doesn't solve the problem of patient access to high-cost drugs. It serves to maintain an unsustainable drug pricing system that is enormously profitable to pharmaceutical companies. It keeps drug prices high.
In conclusion, partnerships between pharmaceutical companies and patient organizations contribute in myriad ways to inflate drug prices and to skew patients' advocacy in favour of the industry. Canada needs a national, publicly funded drug plan and policies to support it.
Breast Cancer Action Quebec recommends that the new PMPRB guidelines go into effect on July 1, 2021.
I thank you. Jennifer and I are happy to answer any questions.
View Don Davies Profile
NDP (BC)
Thank you.
I understand the order of priority is that the United States pays the highest; I think Switzerland is second highest; and Germany or Canada, third highest.
Of the countries that pay lower costs—I guess there are 210 countries in the world—do the Belgiums, Frances, New Zealands and so on have less access to medicine than Canada does?
Steven Morgan
View Steven Morgan Profile
Steven Morgan
2021-06-04 14:06
That's a great question. People throw out these statistics and these stories, frankly, about drugs that don't come to market in Canada. The fact is that drugs go to market in a few places in the world in very large numbers, and then in other markets around the world, they go to market basically on the basis of whether the drug is truly a breakthrough that will earn market share. In places such as Germany and the United States, the legislation of those countries is set up to give manufacturers every incentive to bring anything to market, regardless of how clinically promising it is, but ones that are clinically promising end up in markets around the world.
The literature on this, which I recently did a systematic review on, is quite poor internationally because most of it is funded by pharmaceutical manufacturers. As a consequence, most of that literature has what we call a commercial bias, a bias that says that any drug in any market at any price is a good thing. The reality is that it's effective drugs that countries want, and effective drugs get to every market of the world.
View Don Davies Profile
NDP (BC)
Dr. Morgan, I really want a direct answer, if I could, because there seems to be a thesis developing that if we go through with these PMPRB reforms and they reduce the price of drugs, Canadians won't get access to those drugs.
I'm asking in a real world environment, where there are many countries that already pay less for drugs than Canada does, are they getting worse access to drugs than Canada is?
Steven Morgan
View Steven Morgan Profile
Steven Morgan
2021-06-04 14:07
No. One only needs to look at, for instance, the United Kingdom, a country that pays less than us, gets more medicines on its market and actually has higher research and development in the pharmaceutical sector, so there you go.
View Tony Van Bynen Profile
Lib. (ON)
Thank you, Mr. Chair. Thank you to this panel for joining us today.
I think that all of us can agree that this is a very important discussion. I appreciate everyone's taking the time to join us.
My questions will be directed to Dr. Morgan.
Canadians have access to some of the best doctors and nurses, hospitals and treatments in the world, all of that through our publicly funded health care systems. This includes the incredible team at Southlake Regional Health Centre, where I had the pleasure to volunteer as a board member for many years and to gain some insight into the health care sector.
We've learned that some Canadians, particularly those with rare diseases, have difficulty affording the medications they need. Budget 2021 reaffirmed that the government will proceed with its announced plan to provide ongoing funding of $550 million for the program for high-cost drugs for rare diseases. How do you think this investment will help Canadians currently living with rare diseases now and in the future?
Steven Morgan
View Steven Morgan Profile
Steven Morgan
2021-06-04 14:19
Thanks. That's a great question.
There are a few things under way. The federal government is consulting to try to develop something of an actual strategy around rare diseases. Canada has lacked that to date. I think that's very promising. There's funding for the medicines when patients need them, but there are also the various mechanisms that need to be put in place for the assessment of medicines as they come to market, and to support both manufacturers and patients in navigating often complex and uncertain information about whether the medicines are going to work or not.
The $500 million that's dedicated towards helping provinces pay for expensive drugs for rare diseases is an important step in the process of developing a truly comprehensive national pharmacare program. For patients with rare diseases, I think it's a clear signal that they will not be left behind by a pharmacare program that is designed to cover all of the medicines Canadians need. I know there was a lot of fear at the outset of discussions about national pharmacare that patients with rare diseases would become the second or third in line after the patients with more common conditions like diabetes, asthma and other such things.
View Tony Van Bynen Profile
Lib. (ON)
I'm looking at an article entitled “Pricing of pharmaceuticals is becoming a major challenge for health systems”. In that article it is said that “The pharmaceutical sector can potentially abuse market power because of the inelasticity of demand for necessary medicines.” Can you expand on that, please?
Steven Morgan
View Steven Morgan Profile
Steven Morgan
2021-06-04 14:21
Yes, absolutely. The idea of having a patent as a mechanism for incentivizing research and development typically comes from markets where the price that a consumer is willing to pay is based on the idea that the consumer can always walk away from a transaction on a voluntary basis and not be harmed unduly by doing so. Unfortunately, in the context of necessary medicines, particularly for serious diseases, patients can't walk away. As a consequence, patients and their families would pay virtually anything for effective life-saving treatments. As a consequence, patients and their families and their organizations would try to convince governments to pay anything for effective life-saving treatments. This gives patent holders in the pharmaceutical market very unique market power, which the patent system really wasn't designed to provide. That's why safeguards like PMPRB regulations are a useful tool to make sure that there's incentive for innovation, but not an opportunity to abuse the market power of the patent.
View Tony Van Bynen Profile
Lib. (ON)
Thank you.
One conversation we're hearing lately is about patents in relation to the COVID-19 vaccine. I'm curious to hear your thoughts about the patent process in relation to pharmaceutical drugs. Can you identify any areas where Canada could improve or further encourage pharmaceutical companies to develop their drugs in Canada?
Steven Morgan
View Steven Morgan Profile
Steven Morgan
2021-06-04 14:23
If you want an innovation strategy on R and D in the pharmaceutical sector, you have to improve the productivity of the R and D itself. Manufacturers locate their research and development investments based on science. If you want good scientific research conducted in Canada, invest in Canadian science, invest in data platforms, invest in clinical trial networks, those kinds of things.
Paying higher prices isn't necessary to attract R and D, and countries like the United Kingdom prove that. You can actually have effectively managed drug budgets and significant pharmaceutical investment. Focus on science. Put the investments into the scientific enterprise in Canada. That's where you're going to get your best return on innovation policy.
View Tom Kmiec Profile
CPC (AB)
Thank you for that. I have one last question.
Obviously, you're talking to other patient advocacy groups in the lead-up to the implementation of these regulations on July 1. Should that come about? Should the government not delay it further or maybe stay them, like you asked them to do, to conduct an investigation of the PMPRB?
What will you do in the six months afterward to advocate on behalf of the families who are affected by cystic fibrosis? Do you trust the PMPRB to conduct the implementation?
Kelly Grover
View Kelly Grover Profile
Kelly Grover
2021-06-04 14:30
I am going to answer the last question and come back.
We don't trust the PMPRB for the implementation. They are doing consultations on the evaluation right now. None of us knew about it, because it was promoted on Twitter, and we're not on Twitter all the time, so that was a bit of a problem.
As for what are we doing to do, honestly, we only have so much time and so much energy, and so does this community. We need to get Trikafta into the hands of people who live with this disease. That is not going to be through the PMPRB now, so we have to turn our attention over to our provincial partners and hopefully see this drug funded. We are concerned about the future of cystic fibrosis drugs at this time, but, as I said, we're going to keep our eye on it.
Also, Dr. Morgan spoke about the rare disease framework. Obviously, we are interested in that as well.
There's only so much time and energy. The priority is getting this drug here now.
View Marcus Powlowski Profile
Lib. (ON)
First, let me start by saying that nobody should ever question the integrity of parents of sick children in doing what they're doing. Certainly, I don't think anybody is lying. I think, however, there might be some disagreement as to how to best help Canadians, including Canadians with cystic fibrosis. In passing, I would note that one of my kids' best friends has cystic fibrosis and certainly would like access to Trikafta.
I have a question for Ms. Grover. Hopefully she can be fairly brief. Vertex was refusing for a long time to ask Health Canada for approval for Trikafta. I know Cystic Fibrosis Canada has been advocating and lobbying for these changes to the PMPRB to be withdrawn. Has Vertex at any time asked Cystic Fibrosis Canada to lobby the government on this issue?
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