Health Committee on Sept. 27th, 2018

[Maureen Smith]

Oh boy.

[Don Davies, NDP, Vancouver Kingsway, BC]

What would you as a patient suggest to us would make a big difference—

[Maureen Smith]

As a good Canadian, I file my taxes every year and I file my medical expenses. My out-of-pocket medical expenses vary between $7,000 and $10,000 a year. I'm 40, so I've been paying those costs for at least the last 20 years, because, first of all, I travel to Toronto for care. My disease is ultra-rare, so I see a specialist there who specializes in that area. I spend a substantial amount of my own money. I'm very fortunate to have private insurance with a catastrophic clause in it, so that helps a lot. But even with that, I'm still $7,000 to $10,000 out of pocket.

I have a lot of ideas about recommendations, but I think the thing that strikes me the most is that there's no equity across the country. It's very difficult for a patient to know that someone in B.C. or someone in another province has exactly the same condition as you and receives treatment when, maybe in your province, you don't. People who don't have rare diseases or who don't deal with drugs are flabbergasted by that. We're all Canadians, and they seem to think that universal coverage in hospitals extends to drugs. There's very little understanding of that until you're in that situation yourself.

What's happened with the Internet is that everyone is connected now. Twenty years ago, you didn't know what was happening anywhere else. You were in your own little bubble and you just kind of accepted it. Now, today, you know what's happening worldwide, so to have a catastrophic rare disease and to know that there's treatment out there and that even some of your fellow Canadians are getting it and you're not is extremely difficult to accept. To me, it's not a Canadian value. It's just not how we work as a society.

I think that whatever you can do to try to bring some equity into the system and to make sure that all Canadians are served would be top of mind.

[Don Davies, NDP, Vancouver Kingsway, BC]

You mean like a call for federal national coordination or leadership, which leads into my next question, which is for Ms. Wong-Rieger.

You said three million Canadians have rare diseases, not including their families. I wrote down that rare diseases are quite common, it seems to me. That being said, you mentioned that basically we've heard continuous promises from the federal government since 2012. You heard the excerpts I read about how the federal government, Health Canada, announced it was developing an orphan drug framework in 2012. Consultations were to be complete by 2017, but in October 2017 under the current government, all references to that framework were deleted, and now it's been wrapped into something else.

Why is it so difficult to get action from the federal government, and what's your comment on Health Canada's apparent scrubbing of the system that began in 2012 and a complete retooling, rebeginning of this process in 2017 with now a new target date which, I think we heard from Health Canada, is 2021? We are at about nine or ten decades before getting federal leadership on this. What's your comment on that?

[Dr. Durhane Wong-Rieger]

I'm trying to decide whether I should really speak honestly about what I think or whether I should just give you the politically correct response.

[Don Davies, NDP, Vancouver Kingsway, BC]

Speak honestly.

[Dr. Durhane Wong-Rieger]

Speaking honestly, as we were dealing with this regulatory framework, we kept getting promises that it was going to be submitted, and we kept hearing that the provinces are concerned about it because they're afraid that by having this framework, we're going to increase the number of rare disease drugs that they're going to have to pay for, which was a tragedy.

Part of what we also said was that we want to be able to support having research and development in this country. That's what this framework would have done. We do have drugs for rare diseases that are discovered in Canada and then by the time they get into clinical trials, they've been picked up and gone elsewhere because we do not provide the incentives to nurture that development, as you heard from Cathy and as you'll hear from Tammy.

At the end of the day, we're just net payers. We do not have a research infrastructure, but we also don't have a development infrastructure that says.... When Europe introduced their orphan drug act in 1999-2000, some 15 years after the U.S., they didn't do it just to serve their citizens. They did it because they said all the research and development monies for orphan drugs were going into the U.S. They needed them in Europe, and they developed that framework to make that happen. That was part of our hope. Can we support research and development in Canada as well so we're not just net buyers, so we're net contributors, and if we're developing some of those drugs, some of those profits come back to Canada? We have not put ourselves in that position, so this is a real challenge for us.

Yes, there are lots of challenges. Part of that framework would have supported that. It didn't even go far enough to do that. We thought it was a good starting point, so let's built on it. It was also a signal to the world that Canada is open for business in rare diseases and orphan drugs. Come and develop with us here. Let us support that.

We hear this innovation mandate from this government and we laugh and say that on the one hand, we're talking about it and on the other hand, we slap it away, including what's happened with the regulatory reforms on pricing. On the one hand, we say we want to make Canada first, that we want to encourage the innovation to come here, but on the other hand, we say let's put up big barriers so nobody wants to come here first. Really? You wanted me to speak honestly.

My problem is I think there's schizophrenia here. Can we get it together? Are we going to be number one? Are we going to support innovation? Are we going to encourage research and development in this country? Are we going to encourage drugs coming in and having clinical trials here and making them available to people or are we not? On the one hand, we say we are and we are doing some things to make it happen, and on the other hand, we keep creating more and more barriers and making it more and more challenging for us. At the end of the day, the poor patients are the ones who lose here.

[The Chair, Liberal, Bill Casey]

We'll move to Ms. Sidhu now.

[Sonia Sidhu, Liberal, Brampton South, ON]

Thank you, Mr. Chair.

Thank you, witnesses, for being here, and thank you for your advocacy. I have one question.

I know families who suffer from ALS. Are they going through any social isolation? We heard about barriers. We heard about challenges. Are there any support systems out there? Anyone can answer.

[Tammy Moore]

Yes, you can imagine that as a loved one becomes gradually paralyzed, there are the very physical mobility aspects. That is where an organization like ours—and in your riding it would be our organization—would help to fill a gap left by the health care system.

These people are in their homes and as they're losing their independence, they require supports: hospital beds, wheelchairs, ceiling lifts, things to be able to get people in and out of their homes. If those aren't in place, then they're even further isolated, but again, as their care needs increase, our health care system isn't keeping up with that, so often a caregiver, someone within the family, will have to stay home.

Mr. Davies had asked about the costs associated with it. We had done a study and we know that the costs associated with ALS are between $150,000 and $200,000 in the course of the two to five years that someone will live with this disease. We're talking about loss of income as well. The social isolation as well as the financial constraints become even more significant, so our population is making very hard decisions: “Do I bother modifying my home for the six months I'm going to enjoy it? I'm going to have to take the equity out of my home, out of my child's education fund to be able to support this,” or unfortunately, “Will I have to make other choices about how I'm going to live out my final days as a result of those hard financial considerations?”

Social isolation is an important aspect that we also help to support. Again, we are a donor-funded organization that has people in our communities around the province. We work hand-in-hand with the ALS clinics, but once somebody is diagnosed, they're immediately signed up with our societies and our people will go to their homes and help them to start navigating their journey. We're providing psychological support groups so they're able to be with people who understand what they are going through. We have many supports in place like that to be able to, but we're a donor-funded organization. Should a charity have to fulfill this role in our society?

[The Chair, Liberal, Bill Casey]

Ms. Sidhu, we have to call it quits now because there's another group waiting for the room. Thanks very much. I'm sorry to cut you off.

[Sonia Sidhu, Liberal, Brampton South, ON]

Thank you.

Thanks very much to our witnesses. You're very passionate and very informative, and you've helped us a lot.

[The Chair, Liberal, Bill Casey]

Thank you.

With that, we adjourn meeting number 112.