Evidence of meeting #123 for Health in the 42nd Parliament, 1st Session. (The original version is on Parliament’s site, as are the minutes.) The winning word was insulin.
A recording is available from Parliament.
November 20th, 2018 / 8:45 a.m.
Liberal
The Chair Liberal Bill Casey
I call the meeting to order. We're still waiting for our guests. Apparently they're going through security right now.
We do have a bit of committee business. We have to confirm that the deadline for amendments is Thursday, November 22, for Bill C-316, Mr. Webber's bill. I want to make sure everyone knows that Thursday at 4 p.m. is the deadline for amendments.
Mr. Webber, I went to see if I could find you yesterday, but I missed you. Have you been talking to any officials about amendments?
Conservative
Len Webber Conservative Calgary Confederation, AB
I think it's working out. I'll be meeting again right after our meeting with CRA just to get some wording on the form. With regard to any amendments, there is just a minor amendment, and that's to the actual title. Up until now I've said “organ donation”, but it should be “organ and tissue donation”. It's just an amendment to add “and tissue”.
Conservative
Liberal
The Chair Liberal Bill Casey
That's our total committee business.
I'm going to table the report on motion 132 on November 26. Then we're planning to hold a press conference at approximately 3:30 p.m. on Monday of the same day in the foyer. That's on health care research, Raj Saini's motion 132. I will remind you again as the time draws nearer. If anybody wants to attend that, they can.
There's another issue that we didn't think we'd have time for. We're going to suggest that we propose a deadline to submit witness lists for the study on LGBTQ2 health in Canada. We want the deadline to be Tuesday, December 11, at 4 p.m.
Is that all right with everybody?
Liberal
The Chair Liberal Bill Casey
That's it. Now we're out of committee business.
We might as well suspend until our witnesses get here.
Liberal
The Chair Liberal Bill Casey
We'll reconvene the 123rd meeting of the Standing Committee on Health.
We welcome our witnesses.
You're the first ones we've ever had come in the back door, so we're looking for great things from you this morning. We still have one more witness to arrive, but we'll start. We are going to have votes this morning at some time, so we will be interrupted.
First of all, we have Stacey Livitski, regional chair of Diabetes Canada for northwestern Ontario. We also have Charlene Lavergne, a Métis lady who has type 1.5 diabetes, is it, or type 2?
Liberal
The Chair Liberal Bill Casey
You currently live in Oshawa, I understand. We're looking forward to hearing from you.
We're going to ask Ms. Livitski to start with a 10-minute opening statement.
Stacey Livitski As an Individual
I didn't prepare anything because I wanted to be able to answer your questions.
As an Individual
I've lived with type 1 diabetes for 36 years now. My grandmother and my mother both had and has type 2 diabetes. I have known no other life than a diabetic life.
I was seven when I was first diagnosed with type 1 diabetes. Seven-year-olds do not understand what diabetes means. It was the first time I saw my father cry, because he understood what that meant for me.
My first few months living with diabetes I spent in hospital. I was there for almost two weeks. I was home for a very short time and was hospitalized again. I got the flu. Unfortunately with diabetes, when you can't control your blood sugar because you're throwing up with the flu and everything else, you get sick with something called diabetic ketoacidosis.
When I got my insulin pump eight years ago, I caught the flu and didn't realize how significant it was, because it was the first time I didn't go into diabetic ketoacidosis. That was a life changer for me.
I have been very proactive on my health. I know what I need. I know what I need to do. For a very small time in my life, I was married to an abusive man and my control subsequently slipped. That was maybe a four-year period of my life. I'm paying for those four years to this day, despite my above average care of myself.
Despite the complications that I have, I still live a healthy, active lifestyle. I work out with my family, despite having peripheral neuropathy. My feet constantly have pain. I don't feel my feet properly and yet I took up running after that diagnosis. I do everything in my power to live a healthy life, with minimal strain to the taxpayers and to society.
I am doing my best every day. My best sometimes doesn't cut it. That's okay, because I cannot control what's happening internally. You know, the weather impacts your hormones and everything. I can't control that, so I just go with the flow.
Being here is stressful, something that I don't do every day, so I'm sure in a bit there's going to be a beep, beep. That's my life. I have had to adjust, and I have. Thirty-six years in I've kind of got it, even on those roller-coaster days.
Liberal
The Chair Liberal Bill Casey
Thank you very much. We look forward to asking you questions.
Now we'll go to Ms. Lavergne.
As an Individual
My name is Charlene Lavergne. I have been living with type 1.5 or type 2 diabetes. Nobody knows what I am because of various.... I have no thyroid, so I have some other issues. I go with type 2 diabetes because it's easier for everybody all around. It's not easier for me, but it's easier for them, especially the medical profession. They really don't know what to do with me. It's been over 43 years. I'm 63 years old this year, and I've been like this since I was 18.
I want to make a little aside. When I was diagnosed, it was in Toronto, but I was born and raised in northern Ontario. When I was down here, their attitude was that I wasn't any type because there wasn't anything like that in my day. You were just insulin resistant. Actually, one doctor gave me Valium and told me I was just having spells and should just calm down, so I was pretty stoned for a long time. Frankly, I don't remember too much about those first diabetic years. Then they made me lose 70 pounds. I wasn't all that big in those days anyway, so it was pretty bad. I lived on soup. It was a really bad time.
They had no types, no typing, no technology, nothing. We peed on a stick. We've come a long way from peeing on the stick. Today they measure blood glucose levels, and there are new insulins and delivery systems. I'm absolutely in love with the delivery system. It's wonderful, but I can't afford what Stacey has. I'm sorry about the walk in, but I have neuropathy so bad that I don't feel my feet, my thighs, my throat or my facial muscles, so I have great difficulty. I'm on disability and every day's a gift for me.
My biggest problem is that I can't afford anything. I live on $1,500 a month. My insulins are $1,000. My rent is $1,000. If you can afford your medication, it's great, but if you can't.... I just beg. I go from clinic to doctor, and I get compassionate care, but I never know when it's going to run out, and I never know when I'm going to get my next batch, so it's really a struggle. I don't know if you realize this, but while drug plans will pay for insulin, nobody pays for lancets and nobody pays for needles. I don't know if they expect us to smoke this stuff. How are you going to get your insulin into your body if nobody will pay for your needles?
Our friends decided that we were going to go down to the meth clinic and see if we could get some needles for me. It's really a struggle every day. For a long time I went without and I nearly died. That's just the way it is. That's what happens with the neuropathy. You have uncontrolled blood sugars. I have heart problems, and there's the weight. Every doctor only sees the weight, but they don't realize that I'm not diabetic because I'm fat. I'm fat because I'm diabetic, and I can't get....
I've had 12 surgeries and two cancers. Five of those surgeries were because I wouldn't heal. I had a surgeon tell me that he didn't believe in type 2 diabetes or whatever my diabetes was, and he wouldn't order insulin. It took me a year and a half to heal. He wouldn't give me insulin. He just didn't believe in it. There are a lot of doctors who don't believe in my type of diabetes. They have no trouble with Stacey. They have trouble with me. I'm the issue. “You're too fat. You don't exercise enough. You've never done the right thing, so it's your fault.” I'm telling you honestly, they always blame that. That's their excuse for not treating me. In April, I was refused surgery because I was too fat, and they just didn't even want to talk about diabetes. A lot of surgeons say, “I don't care about your diabetes. It's not my problem, not my issue.” It's a constant struggle for me.
There are four areas that most diabetics like me...and there are a lot of us.
Do you realize that it takes a year to get into the diabetic clinic in Oshawa? I have to go to Whitby, which is 40 minutes away. If you don't have a car, it's a two and a half-hour bus ride and then probably a half mile walk to the little hospital there. I get to see my diabetic endocrinologist every four to six months. If you are sick and you miss that appointment, it's another year. My GP has a three-month waiting period to get a doctor's appointment. I saw her in July. I won't see her until December. I manage my own health care. I read as much as I can. Believe it or not, I'm extremely educated. I have a university degree and a college degree. It's in linguistics, but.... What was I thinking? I don't know.
There are a lot of people who don't have the abilities that I have. They don't have the Internet to be able to go and do these things. There are a lot of diabetics who I talk with. I mean, we wait three hours in that diabetic clinic to see our endocrinologist for eight minutes. I've timed her. She gives us eight minutes. She doesn't check our feet. She barely checks our blood pressure, and she doesn't even look up.
It's really difficult. We need a strategy. I need a plan. I want to live. I have four granddaughters. They're absolutely beautiful, and I want to see them get married. Now, mind you, they're eight, seven, seven and five, but I want to see them grow up. I want to give back, and I'm here because I want to give back.
However, I want you to understand this: They pay for nothing. Nobody pays for anything. Everything I have I've actually begged for. If there's any way that you can find it in your hearts to just.... I mean, I've lived here all my life. I was born and raised here. I had one doctor tell me that it is because I am Métis that I am diabetic. I agree, but what am I going to do about it? He just said, “Well, you know, it's your problem.” In our family, we don't talk about this. We don't talk about being native or Métis or anything. We were always afraid of getting removed from our families. I'm from up north, from Sturgeon Falls. We don't even go to the A&P.
I have to tell you that it's been very difficult. I'm not the the only one. I'm sure there are other stories like this, but every day is a struggle. If you can find it in your heart to even find a way to do the strategies to get a plan.... We need boots on the ground. I can't wait any longer; I just can't.
Thank you for listening. I appreciate it.
Liberal
The Chair Liberal Bill Casey
Thank you for your presentation. I'm sure that we'll have some interesting questions.
We're going to start our questioning with Mr. Ayoub for seven minutes.
Liberal
Ramez Ayoub Liberal Thérèse-De Blainville, QC
Thank you, Mr. Chair.
I'm going to ask the question in French.
Liberal
Ramez Ayoub Liberal Thérèse-De Blainville, QC
I'd like to thank you both for your testimony. Personal testimony is always more touching and appreciated.
I'll start with you, Mrs. Livitski.
You told us your story briefly. You were diagnosed at the start of your life, or close to it. What do you expect from your government and health services? How do you rate the services you received as a young child and those you receive now, as an adult? What services would you like to see offered to young people who are diagnosed with type 1 diabetes and who, as you said, do not really have control over it? They don't really know what's happening to them, even though their parents usually accompany them.
What more would you like from health services? I'll prompt you by saying that this could even affect schools. What do you see on this side?
As an Individual
You have to understand, too, that, like Charlene referenced, when I was diagnosed at age seven, I was peeing on a stick. This gave us outdated information about what was going on in our bodies. Technology has come a long way, and that really has improved our ability to self-care.
I actually expect a little bit more from my doctors. Like Charlene was referencing, there are specialists out there, and we know more than our specialists do about diabetes. We're going for appointments and essentially getting nothing in return from our health care professionals. When Charlene was talking, it made me upset, too, because I've actually, because I'm an adult, had doctors who don't understand that I'm still a type 1 diabetic, that this does not change just because I've aged.
Liberal
Ramez Ayoub Liberal Thérèse-De Blainville, QC
From the beginning, have you ever had any doctor who understood your situation and diagnostic—
