Mr. Speaker, I am pleased to join the debate at this late hour.
For my introduction I have a good Yiddish proverb, which is, “It isn't done as easily as it's said”. It actually sounds way better in Yiddish. However, the proposal in the motion sounds good. It is something I think a lot of people would definitely get behind. If we called it the national grocery store plan to provide food to everybody for free or at a huge discount, of course a lot of people would think it was a great idea.
We have heard about the Hoskins report. The terms in the report that are repeated often include “value for money” and “cost-effectiveness”. A lot of members have talked about the price, but I want to talk about access, access to medication for rare-disease patients.
Currently, this is a highly regulated part of the free market. Pharmaceutical companies, whether they are big, small or medium-sized, compete in a very tightly controlled market, both through the patent system and in the generic markets. It is hyperregulated. In Canada, there are very few buyers.
What government members have talked about doing with a Canadian drug agency is something that the pCPA already does, and it discounts. This is why I disagree with the PBO report. The discount members keep talking about for medication is already assumed in what the pCPA was able to achieve by doing bulk purchasing and negotiating on behalf of all the provinces together.
My problem with the architecture of the current system is that there is very little parliamentary oversight. What a national pharmacare would do is put this system, and members will forgive for the pun, on steroids. In the current system, which would be expanded in a national pharmacare system, drugs will be approved and then governments will quibble over the cost with the manufacturers. I have yet to see a government manufacture a single drug or a single vaccine. This is a problem of access.
I have mentioned my constituents Sharon and Joshua Wong before. Sharon has a very rare form of lung cancer, and she has never smoked in her life. For her particular lung cancer, only 2% of patients have it, and hers is even rarer than that. She has an ROS1-positive type of lung cancer. There is a drug in Canada for it, and thank goodness it is approved, but it is not for reimbursement in my home province of Alberta.
I have talked to Pfizer and to the Government of Alberta, and I have talked directly to the assistant deputy minister responsible for it. I have to say that none of them is willing to budge. My constituent cannot access it, but it is not for lack of being able to pay. The drug is just not available to access because the public insurer and the manufacturer cannot agree on the price to be paid for it. In between all of this is a trapped family and 13-year-old Jonathan may not see his mother live much longer. This is not an issue of price. It is an issue of access to drugs for rare disease patients. This is a system that will be made worse.
On cystic fibrosis, I have had several constituents come to me over the years to talk about the fact that Orkambi has been twice refused by CADTH in Canada. It was refused in October 2018 and November 2017. It was refused because of value for money, the cost-effectiveness. It is right there in the pharmacoeconomic report produced by CADTH, which says that there is no value for money and so it is not going to approve it. However, it is approved in America. This patchwork system of America approved it, and cystic fibrosis patients there have access to Trikafta, Orkambi and Kalydeco.
In my province of Alberta, the health minister, the hon. Tyler Shandro, got Kalydeco approved and reimbursed for patients in Alberta, and for that I thank him. At least some patients with cystic fibrosis will have access to the drug through their public insurer, and it is also available through many private insurers.
This is my problem with national pharmacare. It is not going to solve the problem that my colleagues in the NDP believe that it will, and I respect their work as parliamentarians.
I sat at that committee several times and listened to the discussion about national pharmacare. If members read the presumptions inside the Hoskins report, it says that all provinces would have to participate. Quebec has said that it will not because it has RAMQ, Régie de l'assurance maladie du Quebec. The Government of Alberta, in an official letter written in November of last year to the Minister of Finance, has said that it will not participate in the plan. Alberta has its own plan and can do this itself.
The Conference Board of Canada has said that only between 1.6% and 1.8% of Canadians do not have access to any plans and it is not even an issue of cost. They do not have access, and that is the greatest problem.
We talk about savings for small business. Small business can join a chamber. The chamber network has an excellent insurance benefit drug plan. Small business could go to a CPHR, a certified professional human resources association. I used to be a registrar for one of these associations before becoming a member of Parliament. A small business could go to one of them to find a benefit program that would work for it.
The issue is access and a national pharmacare program would make the issue worse because the regulatory system does not work for patients with rare diseases. I have another example that I want to give the House.
The PMPRB, call it what it is, is a price control board for trademark medication. The entire consultation it has done is a sham. It did not involve patient groups. If members want to check online they just need to Google the Canadian Organization for Rare Disorders, which called the entire consultation process a sham. It excluded families of patients. It cancelled meetings. It did not want to hear from patients all across Canada. It is going to discourage companies, big and small, from coming to Canada to get listed on the formularies across the provinces. That is not helping patients. That is not helping people in my riding. That is not helping my kids. I am not here representing big pharma. I am here representing my constituents and my kids, who have a rare disorder called Alport syndrome. I know lots of people who have Alport syndrome. There are companies doing clinical trials on this.
Another example of why this PMPRB, this price control board, is a sham is the impact it is going to have on families. One-third fewer clinical trials are going on right now in Canada as a result of the announcement on what the Minister of Health is doing on the price control board. There is already a one-third drop and it was at a low point. This is the problem.
I understand that the Liberals will be supporting this motion. In the lead-up to the introduction of national pharmacare, they are paving the way towards a single-payer, single-user universal pharmacare system despite two provinces saying they are out. Other provinces may bow out as well, thus reducing the cost savings in it. The assumptions in the Hoskins report fail under all of those currently evolving decisions being made by other governments, and they leave behind patients with a rare disease.
Money was announced in budget 2019 but there has been nothing with respect to how the money will be spent, whether it will be a pooling of risk, whether it will be a separate insurance system, and how to bring costs down.
I mentioned at the beginning of my remarks that this is a highly regulated part of the market. It is difficult to get a patented medication onto the market. A whole bunch of hurdles have to be cleared along the way, so many companies struggle with it. Companies have to get a product on the market before their patent runs out, otherwise competitors begin to enter the market. The pan-Canadian system, the PCPA system we have right now, even if we look at the list of generic drugs and how we pay for generics, is a percentage of the trademark medication.
Nobody has really talked about what happens when a pharmaceutical company owns both the trademark and the generic drug. If it is just a percentage, why not just raise the price? There is no price transparency. When we buy Tylenol, we can see how much we are going to pay. We can buy Advil if we so choose. The price can be seen clearly. There is no visible price metric that is easily seen by patients, by organizations that are pro consumer or pharmaceutical company or the government.
I want to draw the House's attention to a book called Overcharged: Why Americans Pay Too Much for Health Care, by Charles Silver and David Hyman. The Dean of Harvard Medical School wrote the foreword. The book talks about the importance of price transparency, which does not exist in the current system. It is all inside baseball. The bureaucrats in the towers of Health Canada get to decide things. I am afraid with a national pharmacare system they will get more power to decide what type of medication will be approved.
Earlier today I heard the House leader for the New Democrats talking about New Zealand. New Zealand is absolutely the worst system in the world for someone with a rare disease. The vast majority of patients with a rare disease do not have access to their medication in New Zealand. We should not want to copy a system like that.