Beta Cell #005: Cindy Goldstein Transcript

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Craig: This is Beta Cell, a show about people living with type 1 diabetes. I'm Craig Stubing.

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Type 1 diabetes is hard. You're checking your blood sugar multiple times a day, counting the carbohydrates and everything you eat, trying to figure out how much insulin to take based on the type of carbs at a certain time of day before or after some amount of exercise, and once you figure out all those ratios, your body changes and you have to start all over again. Outside of managing your blood sugar, there are a ton of ancillary issues you have to deal with all the time.

Such as going to the doctors every couple of months, making sure you have all the prescriptions you need, convincing your insurance company to cover those prescriptions and finding a way to pay for all this care you need to stay alive. It's easy to become so overwhelmed with everything we have to deal with that we just don't have the energy to fight certain battles, but Cindy isn't like that at all. As you'll hear, she's a fighter. Whether it's her doctor not giving her the treatment she wants, her insurance company not paying what she thinks they should, or Medicare not covering the devices she needs.

I think that's something we shall do a little bit more, because if we're not going to fight for ourselves, who will?

Cindy: I've had diabetes since I was 50. I'm 67. So I've had diabetes for 17 years. I was having presurgery tests and my blood sugar was very high apparently but they decided to do the surgery anyway, but they said afterward, I should definitely go see my doctors. So I saw my general practitioner and he said, "These numbers indicate that you have diabetes." Type 1 never came up in the conversation. He said, "I can treat you for this." He sent me to an endocrinologist in his practice who was horrible, horrible. Just a horrible person and really an inadequate endocrinologist as well.

She treated me for type 2 diabetes with no success. No, I couldn't control-- I could but it was so difficult and so-- it was horrible. I had to exercise every time I ate anything in order to keep my blood sugar manageable. I had to eat so carefully and it didn't really matter, my blood sugar kept going up anyway. I'd go over to someone's house for dinner and I'd have to go on their treadmill before I could even sit down at the table with people, otherwise, everything was just going to go shooting up.

I hated her anyway, she was so mean. So finally, I just found another endocrinologist recommended by somebody and he also treated me for type 2 diabetes with no success. Meanwhile, they're all trying different medications, none of which work. It was ridiculous, so I switched to somebody else who was a type 1 himself and he himself continued to treat me for type 2 diabetes. Finally, I found an endocrinologist who understood that I was not type 2. Meanwhile, 10 months have passed of hell. It was just so frustrating and so much of my time and energy was devoted to keeping things under control.

For that whole year, I never ate dessert once. Anybody who knows me knows that's a horrible sacrifice because chocolate is one of my main food things and this endocrinologist started me on insulin and my life became much easier, but then insulin pumps were coming in cool ones, but when I talked to the endocrinologist about it, he wasn't interested at all. He was just not a proponent, particularly of pumps, not particularly interested. So I had to leave him, and that's when I went to Ann Peters, and that's when things really got going and I started to really understand what was going on and that's how it all started.

Craig: What were you thinking during that first year? Were you dreading like, this is going to be my life from now on that I'm going to go to a dinner party and jump on a treadmill before I eat dinner?

Cindy: I don't know if I even had an opportunity to look at the big picture like that. I was so focused on the minute to minute, day to day. I was so much more focused on diet and doctors and testing and all learning. I don't think I ever really got to the big picture of what is my life going to be like, but I've never been a person for whom that's ever been an issue. It's always like, "Okay, this is what's in front of me. This is what I'm going to do." That's it.

I'm not one of the people who ever felt depressed or hopeless about being a diabetic, whatever kind of diabetic I was. I'm more about, "What can I do to make this work for me? How can I--" I can't really say fix it, but, "How can I make this fit into my life and how can I work with this?"

Craig: You just roll with the punches.

Cindy: I roll with the punches. I really do. They say if you have one autoimmune disease, which type 1 is, that you're likely to get more. Most people do not have only one. Well, I right now have five and people think that's amazing that I'm a functioning person, normal, healthy, happy but I don't. I just think it's like, "Okay, this is my life." I don't look at it as a big deal in a way. I just don't. It's just my life.

I look at other people's lives with weight loss surgery and the challenges that that involves and I think now that's something that would be hard for me to deal with. This is not. It's strange. It just depends on your perspective, I guess.

Craig: Are there aspects of being a type 1 diabetic that do concern you, that worry you?

Cindy: Long term complications but I'm always working very hard to lower my A1C. I want it to be below 6.5 and 6,3. About four months ago, I finally got it to be 6.5 and I was really proud of that. My endocrinologist worries about that though because she's more worried about lows than anything, and in order to do 6.5 I have to have some lows.

There's another concern and that is, I'm already 67 and in my synagogue I know lots of older people, really elderly people and what their lives are like in terms of health, and even those who have all the help and care that they need, it's still complicated and I figure, "How is this going to work for me as a type 1 with all the energy and all the technology and all the time I have to put in to make it work well."

If somebody has to do all that for me, what are the chances in 10 or 15 years that that's going to work for me? I don't know. That's a big concern. A big question mark. What is not end of life but late-life care for a type 1 about? What is that like and how is that going to work?

Craig: So hard to find people outside of the type 1 diabetes community who understand the disease. Even if I talk to a pharmacist, they'll ask me, "What's your blood sugar today?"

Cindy: I know, like who gives ashit.

Craig: I'd say, "Right now or five minutes ago or when I woke up this morning?" They don't understand the disease so much. So if you're thinking about-

Cindy: Even the endocrinologists who don't even understand the disease.

Craig: So if you're worried about someone else trying to control that for you when you don't even know if they understand the disease, scary.

Cindy: Yes. Even trained people, people who are trained to help elderly people, they're going to have to either be type 1s in themselves or have lived with a type 1 or something to really get it. Even if they get it, they can't be inside me. I mean, what if when I'm older, I have dementia or something. There's so many things that could make

me unable to communicate as well that probably wouldn't be a concern to someone at 25, but at 67 yes, that's definitely a concern.

Craig: What about the mental toll?

Cindy: Yes, last night I was going to work with a client on the phone and he called me and I said, "No wait, my blood sugar is too low, I have to drink juice and I have to wait and I'll call you back." That kind of thing happens once in a while. Happens occasionally. But I don't experience it as negative, that's the thing. I just experience it as, do this, do this, do this, do this. It's just the next step.

Now, if someday I don't have type 1 diabetes anymore, then I may be able to look back and say "Oh my God, that was horrible what I went through for all those years, decades." But right now it doesn't feel like it's taking a toll, it just feels like it's my life, and compared to the things that other people I know are going through especially things related to aging, it feels so manageable. That's the thing, it all feels so manageable to me.

Craig: After the break, Cindy and I talk about fighting with insurance companies and what it's like now that she's on Medicare.

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Cindy: Over the last five years, the big three insulin makers have simultaneously raised the prices of their insulins. With no generic insulin options and without being able to boycott a drug we need to survive, we're forced to pay these prices. This year there's been a ton of talk about in the type 1 community. One thing that's missing from the conversation is the stories of how this affects each of us personally.

I want to compile your stories in our future episode, so whatever it is, I'd love to hear it. Record a voicemail on your phone and email it to craig@betacellpodcast.com or leave a voicemail at 844-321-beta. How much does being on Medicare affect your control, the things you can get, the things that you do?

Cindy: Interesting, there are some wonderful things. All the testing supplies, everything to do with testing, everything to do with the pump, free, the pump, everything free, it's wonderful, wonderful. On the other hand, they don't pay for anything for continuous glucose monitors and that's terrible. I've been working to get that to be changed. Interestingly, Medicare never used to cover the pumps either.

They weren't necessary but now they cover the pumps, but they will cover continuous glucose monitors, then it will become necessary, but I wanted it to happen yesterday and they don't want it to happen till some time. So in general, it's the most wonderful thing in the world because my health insurance represents a 64 years old with diabetes, at that time there was no Obamacare, I could only get insurance through the State, through California and it was $1,800 a month, it was a pretty good plan but I still had copays and deductibles and blah-blah-blah. A ridiculous amount of money.

It went down a little bit the second year, $1,400 a month. Then the only time it was going to change really was when I switched to Medicare.

Craig: People don't realize the financial burden of type 1 diabetes.

Cindy: Oh my God. Every year and it's not all of it is due to type 1 diabetes, but every year I would have a good solid $10,000 in unreimbursed medical expenses, every year. You have to see all these doctors. There's a doctor for every body part basically and you have to see them, well endocrinologists, rheumatologists, four times a year. Everybody else, once or twice a year and when I had regular insurance, I had a copay it could be as much as $25 a visit.

For visits, I was going to the doctor, I am going to the doctor a couple of times a week at least. It's thousands of dollars every year then just for my copay, no more copays, it's quite wonderful with Medicare. I had to take a medication a pill for something that was like a $1,000 a pill. Covered by insurance, it was a little bit less, my share was less but it was still hundreds and hundreds of dollars for one of those pills.

You don't have that with diabetes but you do have all the supplies and my share of that, whatever it was, 10%, 15%, whatever, it's very expensive. It's just amazing.

Craig: For me, and when I was first diagnosed, my mom, constant fights, monthly fights with insurance.

Cindy: Always, but that's always, always with insurance companies on everything. I am the person who appeals every negative decision, all the way to the top until I get it changed, everyone. I used to do it with visits to my physical therapist when I was going like every week, twice a week for more than a year for my back, I'd appeal every single thing they did if it wasn't exactly what I thought it should be or cover every single thing. I don't even think about that anymore. Type 1 diabetes is just one more issue about which to deal with incompetent insurance companies.

When I had insurance from my job, they would switch every year to a different insurance company looking for a better deal, which meant I had to retrain the insurance companies every year and it was so annoying and I had to find out who are the people who knew what they were talking about and knew what I was talking about and make sure I only talked to those people and on and on and on. It was a pain in the neck, but it's always a pain in the neck, it's not about diabetes

Craig: It's hard enough controlling your blood sugars every day, but then when you spend an hour on hold with the insurance agency every day and the doctors every other month, every couple of months, that takes its own toll. That it becomes so much more than just testing yourself which becomes second nature.

Cindy: Again, I think it's a matter of personality because there's nothing I like better than winning a fight with insurance companies or with whatever administrative hierarchies are there. I'm the person who writes letters to companies complaining and making them take back whatever it is or change whatever it is or at least agree with me that what they're doing is absurd.

I'm the person who never gives up doing all that stuff. It's annoying yes, I wouldn't-- My first choice of how to use that hour of my day would not be fighting these battles, on the other hand, I like fighting battles. I'm happy to do it even. I help my friends do it for their own things, whatever. I like that, I like righting wrongs, that's one of my favorite things to do, is right wrongs.

Having insurance companies taking advantage of us, me, anybody, is a wrong and so I'm going to be in there fighting it and winning it. I've sent letters about doctors to the State Board of Medical Licensure, I've complained about doctors officially, I've threatened to take them to court, I've done all this stuff. I do not put up with anything like that. The problem is that most people do put up with it.

They just don't argue, they just accept and I'm not that person. I'm the person who's going to fight every single battle because if you don't, it's never going to change. Even though interviewing me is interesting for you personally, I'm not sure I'm average person who's going to be giving-- You can have me and use me for this but it's not going to be your average person with the average problems and issues.

It's funny, but maybe it's good for them to hear that there are people out there who are fighting all these battles and not feeling

horribly burdened and oppressed and struggling with all this stuff. It might be good for them to know that there are other approaches to all these.

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Craig: Beta cell is produced, recorded and edited by me, Craig Stubing and our theme music is by Purple Glitter. You can find Beta Cell on Twitter and Facebook @betacellpodcast. If you have a story about how rising insulin cost have affected you, record a voicemail on your phone and email it to craig@betacellpodcast.com or leave a voicemail at 844-321-beta. Hopefully we can steer the conversation away from profit margins and stock prices back to the people these drugs were designed to keep alive. The more stories we get, the better.

Be sure to subscribe the Beta Cell on iTunes and Stitcher to get new episodes delivered automatically to you.

I'm Craig Stubing and this is Beta Cell.