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, '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?
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?
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.
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.
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?
In Thunder Bay, we have one endocrinologist and that is it. He has already told me, “You know far more than I will ever know”. That is because I've been involved with Diabetes Canada, so I know the strategies that they've put out to the doctors, even though the doctors don't necessarily follow them. That's something that I can ask and I can expect my government to say to the doctors that there are guidelines that have been researched and set out and that they should be followed.
My husband is lucky that he has me in his life. He was adopted, so he does not know his family medical history. Even though the doctor was doing the tests, he never said anything to my husband. I watched his A1C, which is the blood test that they do to determine if you're a diabetic. I was watching his A1C level go up and up and up. I said to him, “Do you realize that, at this moment, you are sitting at a pre-diabetic level and if you don't get your act together, you're going to cross that?” His doctor never said anything, yet that number is in the guidelines and he was almost there.
I expect our health care professionals to actually be following those guidelines. They're there for a reason. Diabetes Canada does not put in hours and hours of work with leading specialists for that information to sit on the shelf, without being used to implement better care.
I think there needs to be a little more incentive to come to the northern communities. Charlene and I are still a distance away. We're still in northern Ontario.
Despite getting the early notice from my doctor because I just happened to be there when he made his choice, I went over a year without a family physician after mine retired. I had the applications going in to the doctors already, and it took me a year of badgering before I was able to get a doctor.
That's bad because I get to see my endocrinologist twice a year and that's it. If anything happened in that time, I was having to go to walk-in clinics. I would not go to emerg; I went to the same walk-in clinic where I was able to build that rapport with that physician. They understood that I knew what I was talking about, because if doctors don't realize that, I end up getting poor care because they think they know more, and they say it's just my diabetes and I'm not taking care of myself.
I know my diabetes is not well right now because I have an underlying issue that's making it impossible for me to take care of myself.
Oh yes, I've done that. I do it all the time.
I have to say, though, I have managed to beg enough that I'm doing pretty well for right now, but I never know when that's going to change. It depends on the mood of the doctor.
The other problem I have is that I also ration pills. I reuse needles, which just makes me ill. What do you do? You reuse the needles, reuse lancets and you're all alone. I'm all alone. I have nobody to help me. I live alone. My husband's dead. I don't have anybody to help me. If I have a problem in the middle of the night, I'm going to die. There's nobody.
Nobody understands. My favourite is when you do go to the doctor at an urgent care clinic. I love it. “Oh, another diabetic. Here we go.” They don't see past the fat anyway.
There are four things we need. We need affordable housing. We need to be able to afford our medications. We have real problems with food insecurity. I can't afford to eat. I don't know about you guys, but my budget to eat every month is $89. I don't know how you guys do it, but I'm telling you, it's fun.
Basically what I'm trying to say is that it's difficult outside the urban areas. I can't get around without a car. I can't do anything.
What we need from the government.... I just don't want to be alone anymore. I feel I have given my country everything I needed to give. I gave you three beautiful daughters who are not criminals. They are taxpayers. They're struggling. I have grandchildren. I've always done everything I needed to do, and now I just feel like I've been abandoned. I feel like I'm not getting the help I need.
The doctors I do see don't have the time or energy to listen or care.
I'd like to thank both of you for being here this morning.
I'd like to welcome the three witnesses. Ms. Kemp, I'm including you in the discussion, even though you didn't have an opportunity to make your presentation.
I often see committee meetings televised on CPAC where they hear from ministers. However, if there is one committee that deserved to be broadcast on television, it's this one. Indeed, your testimonies are direct and touching, and they shed light on a little-known reality. I have the impression that many Canadians who, like me, don't have diabetes, make themselves feel better by thinking that this disease is regularly and easily treated with insulin. However, this study is allowing us to discover a completely different reality, which your testimony is expressing so well.
That said, the committee is meeting today to make specific recommendations to the government so that it can move things forward in your favour.
There are two questions I would like you to answer in turn. The first concerns the funding of health services. As you know, health care is largely managed by the provinces. Do you think that a better transfer of funds from the federal government to the provinces would mean better services for your communities?
You have my notes, and people have read them.
I'm going at it a bit differently with regard to CGM. It helps me because my blood sugar fluctuates; it's called hypo-unawareness. With type 1 diabetes, your blood sugar can just plummet and go low. You have no signs or symptoms. It's very dangerous. I can be somewhere and not even recognize my husband. You need to have your blood sugar.... It's on my phone because of this transmitter that I wear. It costs me $3,000 a year, and it's not covered by extended medical insurance.
I brought some to show you and to pass around. In order to put this on, you need a needle—like this—to insert that. It has a copper wire that reads your blood sugar, which is a sensor. It has a transmitter attached to it. It's very high tech. In the notes you can see that, at any time, you know what your blood sugar level is. Then you know how much insulin to take and what to eat. It's showing on this that you want to be within the grey line, but it could go down or it could go up. Because I was panicking getting here—I left at seven in the morning from Kanata—my blood sugar went low. I could see on here that it was going down so I just drank a juice. However, if I didn't have this, I wouldn't know that it was low. I could pass out.
Not everyone with type 1 diabetes—that's 10% of the 11 million Canadians with diabetes—needs to wear a CGM. It's the 2.5% or about 275,000 Canadians who have hypo-unawareness. You need to test before you drive. You test when you wake up in the morning. If you don't have this, you set your alarm for 2 a.m. and you test, because you often go low in your sleep. What happens is then an alarm goes off.
It's a great system. It's like magic. Imagine having a diabetic child, and the parents have to keep going in to prick their finger and test because they don't know if their blood sugar is going high or low.
You prick your fingers about 42 times a week, whereas this is one needle a week. That's like 2,000 finger pricks. It hurts. Mine are calloused.
What I'm asking for is to have this covered. The key point is that the CGM system, the continuous glucose monitoring system, can prevent life-threatening emergencies. Also, it can put less financial stress on the family, less burden. It would help people with type 1 diabetes hypo-unawareness have a healthier, confident life, because you don't feel confident if you don't know what your blood sugar is.
Here's the best way I can explain it. What's your blood pressure right now? You don't know. That's what we live with. We live in fear. The reality is that we live in fear. We don't know if our blood sugar levels are high or low. This is perfect because it will show me. When I got here, it had two arrows going down. That was like “Get some juice into you quickly”, right? You like to have it nice and even, but things happen in life. Everything affects your blood sugar. I'm just saying that this would save money in the long term because of all the complications with type 1 diabetes.
You had another person listed to speak today, Michelle Sorenson. Unfortunately she wasn't well. She ended up in the hospital.
I don't know what else I can say. It saves money.
I also brought an insulin pump to show you. You use this needle to inject the infusion set, and then you attach this cannula. You can see what's in here. There's a cartridge of insulin. If I'm going to eat something, I'll look to see what my blood sugar is. Okay, it's six. I put in my blood sugar level. How many carbs am I going to have? I'm going to have two pieces of toast, so I put in 30 carbs. Then it does the math and figures out how much insulin I need.
It's a fair amount of work, but this has saved my life multiple times. Not every person with diabetes needs this because they have signs and symptoms. The unawareness means that you simply go low and you have no symptoms, such as perspiring, headache, dizziness, mood changes, extreme fatigue or turning pale. You don't have any symptoms. I ran into Costco once to get some flowers and boom—I went low. I would love to have seen that videotape. I was walking around and I didn't expect to go low. I didn't have anything with me. I had my Costco card and my debit card. I needed food, right? They always hand out samples and someone gave me one. I opened it and it was a bar of soap. I was going to eat it, but I smelled it and thought, “Oh, God, I can't eat that.” You're so low your brain is shutting down. You can't ask for help. It's hard for others to imagine. I couldn't find the door because my brain was shutting down. I just kept walking around and around. You can have this right next to you but your brain has shut down and you don't even know you need to drink it. I finally found the way out, but I didn't know where my car was. Luckily a beep, beep did this. My car was full of food and juice and all sorts of things. I finally found it. I sat there, drank three juice boxes, ate some food and I was okay. You live like this.
Indeed, thank you, Chair.
One of the Conservative members, , has brought forward a private member's bill, Bill , the fairness for persons with disabilities act. It tries to make sure that everyone who has diabetes and is, as you say, worrying and calculating and taking all these actions 24-7 has access to the disability tax credit, which then also gives them access to the pension that's related to it to try to help when they turn 65 to pay for all of these medications and things going forward. I think that's a good idea, but my concern is that today, even with the disability tax credit, 40% of the people who should qualify aren't able to get it.
Ms. Kemp, you weren't here when we had this discussion. Do you get the disability tax credit?
After all the testimony I've heard, it sounds to me that it would be terrific if, when a person is first diagnosed, it would be recognized what type of diabetes it is and what the best method would be long term to control it. For example, if when you were young, you needed a glucose pump and you were able to get one, that would offset....
It's going to cost $7,000 for that pump, and I'm not sure how often you'd have to replace it, but that would preclude some of the emergency room visits, the amputations, the very expensive procedures. I think we heard something about $70,000 for serious diabetes intervention in hospital. It would be ideal for the person's life if they were able to have the technology and they were on a plan where it was paid for—needles, etc. That would be good.
Is there anything else that is needed in order to really address this issue that is affecting...? I guess one-third of Canadians have diabetes or prediabetes.
There is something with the disability tax credit that I didn't get to mention. When I was denied the last time I applied, I called the office and was told that as long as my file went across that agent's desk, she would never approve my claim because she felt I did not deserve it.
Like Charlene, I have peripheral neuropathy. I am in shape because I do work out, but every time I take a step, that step hurts, and that was not taken into account. It was really a blast for me to be told by this agent, “I don't feel you deserve this, and as long as your file goes across my desk, I will not approve your claim.” Do you know how heartbreaking that is?
I wrote a letter and sent it to the appeals office, which is located elsewhere, and to the office in Sudbury, across the desk of this lady who told me I wasn't approvable on her account, and I explained the mental impact, because that is what's huge.
I get blamed, just like Charlene does, because I'm diabetic. I did nothing wrong. As I said, we're fighting every day. There are small system breaks that just need to be fixed so that we don't get blamed for everything we do and we get credit and are acknowledged for doing everything that we do to try to stay healthy.
It's going to help a lot.
As Charlene said, she gets blamed because she's Métis. I mentioned my 16-year-old daughter, who has status as well. There's a pediatrician in town she will not speak to because when she mentioned that she works out, the physician said, “Why do you work out? You're tall and slim. What do you have to do to work out?” She also has ADHD, and she said, “Well, I do it to stay healthy. I have ADHD, and this helps. I'm at risk for developing type 2 diabetes.” He looked her up and down and asked why she would say a thing like that. Well, it's on both sides of her family. She has that genetic disposition, and it's likely going to affect her. The 360° plan would help my daughter in the future.
Prevention of limb.... As I said, it's huge in northwestern Ontario, especially in Thunder Bay, and I am very afraid of it.
Yes, the plan is still high level, but I think it's going to help us slowly get down to those root issues.
My first question is for Ms. Livitski.
You mentioned about the benefits package, I think, for your husband's job. That's a pretty tricky one, because from the business standpoint, it's part of the policy with the insurance company that it has to be confidential. You can't know which one is, but it does make it tricky when the person in the business is trying to figure out what package of benefits would be best suited for the company.
I wonder sometimes, when there are a lot of dollars invested in advocacy and lobbying by different agencies like Diabetes, etc., if they shouldn't spend more time talking to the CFIB and other businesses to convince them to enhance those specific things. A lot of times they come to government and say they need this, that and the other, and they have about a 50-year history of being disappointed. I also wonder, if you're fortunate enough to have benefits, if they shouldn't talk to the businesses to improve that.
These are things that we're being impacted by, and it's not recognized and being treated as if all of these things connect together. I find it odd that I, as a 43-year-old lady who has no medical training, recognize that every part of my body impacts the other. I'm terrified to go for my next blood work because my A1C is not going to be where I want it to be because I've just had major mental health issues. I saw the impacts. I felt horrible.
This is how bad it is, right? I'm now stressing and hard on myself, and I don't want to go to get that next blood work, because it is not going to be where I want it to be. To me, that just gives that physician the right to say, “You've done this to yourself. You've brought it on yourself. Look at what you did. You didn't have control. How dare you?”
Well, you know what? I was trying. I didn't have my sensor. I was suffering from depression and anxiety. I have PTSD. It all has an impact on me. I'm trying, but I can't do it. I need my city, my province and everyone to work together to help me get the resources that I need because I live in the middle of nowhere.
I empathize with your concerns. It's frustrating because the tools are there. They're readily available for the physicians.
A doctor told me once, “I love it when you come in, Karen”, because I tell her all sorts of things about diabetes. When I first moved to Toronto, I went to a physician. I told her I have diabetes, and she said, “No, sorry. I won't see you. You'll have to find someone else.” I said that I'm only here for a year and I understand diabetes. I won't be high maintenance; I just need a doctor if I have a cold or something. She said, “No, I won't take you.”
One doctor told me she loves it when I come in because she learns about diabetes. I said that there's all these conferences you can go to and there's literature, but she doesn't have time.
I'm sorry that I'm switching with Mr. Aubin. I had a bridge issue—people know me around here as the building person.
Before, when I had a real job, I was a PSW. I used to work on behalf of persons with disabilities as an employment specialist. We recently had a juvenile diabetes group lobby the Hill here. One of the things was the disability tax credit. What's interesting about that was in 2002, when I arrived here, it was to be cut by the Treasury Board at that time. John Manley was the finance minister who was being advised to cut it. We ran a long campaign with Malcolm Jeffries, who has passed away by now. He was wonderful. We were able to stop it.
Can you highlight the difficulty about the disability tax credit? Even saving it from being cut, it really doesn't cover very much of your costs. Could you especially connect that to how that type of access and resources for prevention could be really worthwhile for our health care system, where we'll make more money—let alone the ethics of doing the right thing—with a little bit more support for people to be preventative in their daily and working lives?
Prevention is the total key.
Having a CGM pump for myself, I don't ever have to go to the hospital. I did once, right when I first got my pump. Because I knew so much, they said, “Okay, we're going to stick the IV in you because yes, you're dehydrated and you need that,” but they spent no time on me. They just said, “There you go. We'll take it out when you're done.”
Since then, I have not been in the hospital because I am working my butt off to keep myself...but it costs. If you've been watching me, how many times have I looked at this thing and actually made changes to the insulin that's going into my body because I'm going low and trying to prevent it? Prevention is everything.
I call it little money and you guys look at it as big. I look at it as it's a little money up front to save a whole heck of a lot of money down the road. I was diagnosed with peripheral neuropathy when my daughter was two and a half and she's now almost 17. By rights, I should probably have had an amputation by now.
I had planned a trip halfway around the world for a year, which I did take. There is diabetes in my family, but type 2, and so prior to going, my doctor wanted to do a test. She did the test and then she went on holidays, and the doctor who was filling in for her looked at my report. My blood sugar was 11. The normal range is between 4 and 6. She had the nurse call and tell me everything was fine.
So I went. I travelled for a year all through Southeast Asia, New Zealand, Australia, India, backpacking, but occasionally I wouldn't feel well. Then I was getting really sick, but in India a lot of people didn't feel too good anyway. I was thirsty, as she said, and I lost 30 pounds in 10 days. So I hopped on a plane and flew home, but I went into a coma on the airplane, a diabetic coma. The cells that produce insulin, the islet cells, were rapidly being destroyed, which I wasn't aware of. Actually, I was in the airport in Japan for two days because I was so ill they didn't want to put me on the flight. Finally they said they would take me. I lived in Vancouver and I went into a coma on the plane. They made an emergency landing in California, and got me off the plane. My blood sugar was 58 and they gave me six hours to live, because you just can't survive with high blood sugar like that.
Anyway, I made it, and that's how I found out that I had diabetes.
Wow, that's quite a story.
We definitely need to do a better job of screening because otherwise it's hit and miss, right?
The other thing I thought of with this mobile idea is the difficulty in getting a doctor, and a doctor that's experienced in diabetes, and getting the right devices. If you had a mobile doctor, the diabetes doctor, for a given area, who had all of the devices and was informed, it would be a great way of improving the service and getting that prevention in place, I think, in a good way.
Is there any comment on that?