Madam Speaker, I would like to thank the member for Kitchener Centre for tabling Motion No. 132 so that we are able to have this debate.
I have had the honour of serving with the member on the foreign affairs committee. We have had conversations on the side, mostly related to foreign affairs, but he did bring up his past as a pharmacist many times.
Unfortunately, the member talked about physicians and not about pharmacists, but I have a Yiddish proverb: Time is the best physician. However, time is actually not the best physician. This Yiddish proverb is wrong, because it says that if someone with an ailment or disease just waits, eventually it will get better. Mostly this proverb is used for something like tripping stubbing a toe, and in that sense it is true that it will pass without medication or a physician's help.
A proverb that applies much better to this situation is “Health comes before making a livelihood.” We have seen it in the House before, and we just heard a member today speak about her health. Health comes first. It comes before everything else. It is the most important matter in our lives, both the health of our families and our personal health. It is the greatest determinant of whether we can pursue our dreams and our careers and take care of our families.
Time is also something that patients do not have. When we talk about health care, we are not talking about buildings or research; we are talking about patients, people with an illness or disease for which they need healing, treatment, or some type of therapy so that they can extend their lives or have a better quality of life.
The motion speaks about increasing benefits to the public from federally funded research, which is a laudable goal. As a Conservative, I like to think that we get value for our money, a bang for our buck. We should always try to maximize the return on investment. Therefore, absolutely, I support the motion, and the principle and the wording of it. Having to report back within a year with some solutions for Canadians is especially valuable.
I remember serving on the Kidney Foundation of Canada Southern Alberta Branch. Value for money is what the Kidney Foundation is all about, with 60% of the dollars raised going toward private sector research, and there it is always about what the best thing is for the patient. What do patients want? What can be achieved for patients with the dollars raised? This is how I feel and what federal government research should be about. It should not be about building a research empire or clusters or superclusters or hiring new university adjunct professors. It is really about what can be done for patients. This is what it should be all about. The goals of lowering drug costs and increasing access to medicines are all for patients, for their families. It is for a better quality of life and to extend lives.
I would like to focus most of my comments on rare diseases and the orphan drug framework, which was supposed to have been introduced and in action about two years ago. We are still waiting to see it.
I bring up rare diseases because this is one of the fastest-growing fields in medical research. There are many new rare diseases. Diseases that used to be considered one disease have been split into two or three or four as our knowledge has improved.
I say this as a father with kids and a wife who have a rare disease. My family has Alport syndrome. I do not have it, but all three of my kids do. There are 40,000 patients with Alport syndrome globally. However, out of six and a half or seven billion people, 40,000 is not very many. This is something that I have mentioned in the House before. There is no known cure for it, and eventually it leads to terminal failure of the kidneys. There are six other families in Calgary who have exactly the same condition as my kids and wife, but there are hundreds of Canadians—one in 12, and now they say it may be as high as one in 10—who have some type of rare disease, which varies between terminally lethal to something that might be more benign or something in between.
Sometimes there are therapies available to improve people's quality of life. Other times, there is simply nothing, because there is not enough knowledge, although public research is being directed toward discovering a better therapy or that first stepping stone toward creating an opportunity for a drug that might relieve or improve the condition of a patient.
Clinical trials, as I have come to learn over the past two years in learning about how the health system works, take a long time, and the length of time is getting longer. Every physician I have spoken to who is in the field of public and even private medical research say it is being delayed by longer clinical trials in phase I, II, and III.
Phase I, often called the “first-in-man studies”, is where healthy volunteers are used to determine the maximum dosage of a potential new drug or new therapy. It is a very expensive initial phase.
Phase II, consisting of a small number of patients over an extended period of time, is used to see whether there are health improvements and any safety issues.
Phase III, consisting of a larger group of patients with a control group, investigates whether there is some type of worth for clinical practice.
It is taking longer and longer as we try to develop therapies and to develop new drugs or to have a secondary use for a current drug that could find some new use in treating a condition that might not have been thought about before.
The private sector is pursuing all of those opportunities, but there is a very high cost. What the government brings with public funding, typically, is the opportunity to provide a large amount of financing to focus people on a very specific goal. Curing cancer has typically been one. Curing diabetes is another. It can pool resources.
All members of Parliament have the power to convene. Government has the power to convene resources and people to focus on a specific issue. We should be getting bang for our buck.
In the case of Alport syndrome, there is a private sector company, Reata Pharmaceuticals, that is developing a second-generation drug with bardoxolone methyl, which they are now testing to see whether it could provide some type of relief for sufferers of Alport syndrome.
There are many other rare diseases that could use public sector financing and/or private sector financing.
One thing I want to point out is that when we talk about national goals, do we want to be world leaders and do we want to have a supercluster of health research? National goals should be synonymous with patient goals, not with meeting some percentage or having Canada come first in an international ranking of G7 countries, or the OECD, or versus the European Union. I could not care less whether we are at the bottom or top of a list. If we are meeting the goals of patients in Canada, if we are actually developing real therapies and new drugs and new opportunities for people to get better or to extend their lives, that is what we should be doing. If we happen to wind up at the bottom of the list, then so be it. Therefore, when we talk about national goals, we should be talking about patient goals. The terms should be inverted.
All of this research has to be for patients. If it not for patients, then it is not meeting its goal. In this regard, I have gone through the websites of CIHR and a lot of public sector bodies, and they do a lot of good research. A lot of that research, though, is basic research, trying to understand the basic functioning of the human body, the basic functioning of different drugs that are being developed, and the secondary uses of drugs. Sometimes what is missing is that patient focus.
Have they actually gone to the patient community with that particular condition, with that particular illness, to ask them if that would be something they want pursued, if it is something that would be helpful, and how they could be reached to better understand what the families are going through.
I recognize that it is very difficult with rare diseases. Some rare diseases in Canada could have as few as 60 sufferers. That is one of the reasons the company that developed Soliris is facing so much opposition and anger, both from patients and provincial governments that are attempting to negotiate an agreement with them. That effort has failed so far. It is because there is a very particular drug that treats a very particular autoimmune disease.
Advancing the frontiers of knowledge is fine, but we have to do it for people, kids, and families. I feel that this motion is reaching that goal. We are trying to reach for the goal, trying to find an opportunity.
I will be supporting this motion. I think its intent is in the right place. Let us invert the terminology and never talk about national goals, but patient goals.