Reactions from Study Participants

In an effort to report on all sides of the DCCT (Diabetes Control and Complications Trial), we interviewed eleven of the participants about their experiences; four on conventional therapy, four on multiple injections, and three on the pump. Here are excerpts from our interviews with them. It is interesting to note that whenever someone from the conventional therapy group became pregnant, she was transferred to one of the intensive therapies for the duration of the pregnancy.

Tammy Pierce

Type I: 13 years

Fullerton, California:

Therapy: Conventional (pump during pregnancy),

Benefits: “Conventional therapy is easier, it has less of a time requirement, it’s less of a burden.”

Detriments: “It’s a risk in the long run, due to complications.”

About the Study: “It was wonderful. It made you more aware of what you eat and how much you exercise. It’s hard to give up the support staff; they were like family.”

New Therapy: Pump,

Problems: “We’ve got good insurance, we’ll be fine.”

General Comments: “It will be nice not to have to go to the doctor so often, it’ll be nice to get back to ‘regular’ health care; I’ve got a good doctor…. I’m surprised that the media attention was so slight, it was an important study…. I preferred conventional therapy until I tried the pump, now I’m torn. When I went on the pump I got retinopathy very quickly, due to the rapid change in blood glucose control and the pregnancy. They cured it with laser therapy…. I didn’t have any unusual hyper- or hypoglycemia on the pump.”

Deborah Chandler

Type I: 15 years

With Study: 5 years (about half on pump)

El Cajon, California:

Therapy: Conventional (pump during pregnancies)

Benefits: “Conventional therapy is a less structured type of treatment, and that’s important to some people. You strive to feel good, with few bouts of hypoglycemia and hyperglycemia.”

Detriments: “Using urine testing felt antiquated, like driving at night without headlights. I felt in the dark.”

About the Study: “I wasn’t surprised by the results, only by the profundity of the differences. I like that it was a well-controlled study.”

New Therapy: Pump

Problems: “I think that we can swing it financially; we decided a year and a half ago that when the study was over I would go on the pump, so we’ve been saving money. Insurance will cover most of the monthly supplies. It’s easy to use and stick with, I’m already in a support group.”

General Comments: “The study has made me very aware of the questions to ask in finding the right doctor. I need a physician who will listen to my input…. Diabetes is like smoking, the problems show up years later…. I hope that the information provided by the DCCT will help people go to their providers and get better care.”

Deborah Philipp, 30

With Study: 5 years

Hopkinton, Iowa:

Therapy: Conventional (pump during pregnancy)

Benefits: “The pump gives you better control.”

About the Study: “I thought it was great, I got excellent medical care for the five years I was in the study, they were there 24 hours a day.” New Therapy: Pump,

Problems: “I’ll have no problem sticking to it (pump therapy); I already bought a pump.”

General Comments: “It wasn’t like being a ‘guinea pig’, the staff was wonderful. It was good to be a part of it.”

Tracy Snakstone

Type I: 25 years

With Study: 9.5 years (first person in the US recruited for the DCCT)

Oronoco, Montana:

Therapy: Multiple daily injections (4-7 shots a day),

Benefits: “You improve your control, because you have to keep an eye on it. You also feel better.”

Detriments: “I didn’t have any problems with hypoglycemia, because I could catch it before it happens. If you’re keeping track of your glucose levels, you shouldn’t have that big a problem with hypoglycemia.”

About the Study: “I thought it was wonderful: it wasn’t easy, but you feel better.”

New Therapy: Staying with Multiple

Problems: “(Multiple injection therapy) is more costly than ‘standard’ therapy, but I won’t have a problem with it; I work at the Mayo clinic, so I’m mostly covered.”

General Comments: “It’s good to know there is a program happening that will prevent or slow complications.”

Gail Gardener

Type I: 16 years

San Diego, California:

Therapy: Multiple

Benefits: “I stayed healthy.”

Detriments: “None.”

About the Study: “I think it was an excellent research program. It opened up new fields to look into.” New Therapy: Staying with Multiple

Problems: “I shouldn’t have any problems: using multiple injections is a lifestyle I’ve already adjusted to. I have a $500 deductible insurance policy, which I pay through the nose for, so I can afford the therapy.”

General Comments: “It was a study that needed to be done, to open avenues of research. I feel this is the first step in finding these answers…. I think the pump is one of the best therapies for diabetics, even though it doesn’t work for me.”

Daniel Lamb, 24

Type I: 14 years

With Study: 9.5 years

Aurora, Colorado:

Therapy: Multiple

Benefits: “It gives you more freedom than the pump, it’s more flexible with my schedule.”

Detriments: “Having to do the shots, but overall that wasn’t really a problem, just part of life.”

About the Study: “It will be tough to leave, I think it was a good study. I would do it again, if I could, I got very close to the physicians and technicians.”

New Therapy: Staying with Multiple

Problems: “Financially, I may have a problem sticking with it, but I’m waiting to hear from my insurance. If they help pay, I’ll have no problem.”

General Comments: “I feel OK about going back to ‘normal’ health care, but I’ll probably just use the doctors as a sounding board; mostly I’ll be doing self-care.”

Jeff Heuer, 39

Type I: 20 years

With Study: 6.5 years

Des Moines, Iowa:

Therapy: Multiple (tried a pump for a few months)

Benefits: “I was constantly checking my blood sugar, improving my control and freedom.”

Detriments: “It’s expensive, now that my supplies aren’t free.”

About the Study: “I thought it was great: I had to adjust my lifestyle a little, but my control and knowledge were greatly increased. The fact that questions were answered was rewarding. I believe in the study.”

New Therapy: Staying with Multiple

Problems: “There shouldn’t be one, though if my insurance can’t provide 50% of the cost, I may have to cut back to 3 shots a day.”

General Comments: “I’ve had my share of hypoglycemia, 3 really bad cases in 6 and a half years, but the blood testing every 4 hours means you can catch it when you start to feel the symptoms…. I didn’t like the pump because I’m very active…. The teams were great, we had exceptional health care professionals…. I can go back to ‘normal’ medical care, I’ve learned enough that I can keep control.”

Sharon Harlow

Type I: 9 years

Oceanside, California:

Therapy: Pump

Benefits: “You only use regular insulin, which has a more predictable response. You have better control and flexibility.”

Detriments: “I hate having the thing in 24 hours a day and I hate changing sites. Sometimes the insulin isn’t being absorbed, or the tube pulls out, or the pump goes haywire and breaks down. These are mainly irritations.”

About the Study: “It was fabulous, it made all the difference in health and education. It was the most wonderful experience of my life. I feel blessed but worried about the other diabetics who didn’t get to participate.”

New Therapy: Staying with the pump

Problems: “I’m going to shift everything over to Kaiser, but without insurance tight control is very, very expensive. But cheaper in the long run, due to complications.”

General Comments: ” I feel very insulated by being in the study, where all your supplies are just handed to you. I have some trepidation about going back to ‘normal’ health care, but I feel I know so much that I’ll be able to ask the right questions and find out where to go. I’m worried but prepared to go into the ‘real world’ of therapy…. I believe that patient education should be a part of future therapy…. I went through 5 pumps in 3 years; I haven’t had one go a full year without dying. MiniMed will FedEx you a new pump when the old one goes haywire, but it takes at least a day, and once it took two days, to get it. I’ve started carrying syringes with my meter just in case the pump fails.”

Nancy Schnack, 37

With Study: 7 years

Durant, Iowa:

Therapy: Pump

Benefits: “I could maintain a busy lifestyle. I didn’t have to work around an insulin schedule.”

Detriments: “The first pump weighed 3 pounds, was awkward, and very visible. With the newer ones, I’m getting used to it.”

About the Study: “It was always well orchestrated, and confidentiality was maintained.”

New Therapy: Staying with the pump,

Problems: “I’ve been unemployed for 5 months this year, and I’m currently working on getting insurance. I wonder when they’ll learn that intensive therapy is cost effective in the long run?”

General Comments: “The pump made such a difference that I’m sticking with it…. I’m going to miss the intensity and rapport I had with the health care team…. I averaged 1 and a half years per pump.”

David Harbaugh, 32

Type I: 16 years

With Study: 8 years

Waterloo, Iowa:

Therapy: Pump

Benefits: “It gives you tight control, glucose levels under 125.”

Detriments: “I got more low blood sugars than ever before. I got used to the pump, but it gets in your way sometimes.”

About the Study: “I got wonderful care; it was a well-designed and well-run study.”

New Therapy: Staying with pump, Problems: “There will be ups and downs, like with anything, but I think I’ll do alright. The cost is sometimes a problem, but I’ve got insurance.”

General Comments: “It’s going to be different going to a waiting room and standing in line. I’m not sure what I’m going to do for a doctor.”

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