DCCT Study Participants Share Reactions

For the last ten years the DCCT has been a big part of the participants’ lives, affecting everything from what they eat to how they control their diabetes. The study is over now; the doctors have proven the effectiveness of intensive therapy, they have told us that tight control is the new standard in diabetes care. But they have not told us what the new therapies are like and how they affect our day to day life. For that we must talk to the participants themselves. We contacted eleven of the patients for their insights on the study and the therapies they used.

Four of the people we contacted were in the conventional therapy group, using one or two shots a day and diet to control their blood glucose levels. There was some home glucose monitoring, using either blood or urine testing, but it was nowhere near as often as that done by the “experimental” group. The benefits of this type of therapy lie in the freedom from multiple injections and intensive testing. “There’s less of a time requirement, less of a burden,” said Tammy Pierce of Fullerton, California, “but it’s a risk in the long run.” Tammy preferred conventional therapy until she was put on the pump during her pregnancy, after which she changed her mind: “I like the tight control.”

Deborah Phillip and Deborah

Chandler also switched from conventional therapy to the pump during pregnancies and are going back to the pump now that the study is over. Phillip has already bought a pump, and Chandler has been saving up for one for a year and a half. Ms. Chandler reported that within two months of going on the pump, her A1c levels were between 5 and 5.9%; well within the normal range of 3.8 to 6.5%. “If you don’t keep your glucose levels under control,” she said, “you don’t know how good you can feel.” All four of the patients on conventional therapy are switching to one of the intensive treatments.

We talked to four patients who were on multiple injection therapy (three or more shots per day) and frequent blood testing, and they liked the level of control and freedom from restrictive diet and exercise schedules. “(Insulin) is calculated on what’s happening in a 4-hour rather than a 24-hour span,” explained Jeff Heuer of Des Moines, Iowa, an accountant who plays basketball during his lunch hour. Multiple injection therapy allowed him to play without worrying about high or low blood sugars. Because he was testing his glucose levels so often, Mr. Heuer was able to catch low blood sugars before they happened, as was Tracy Snakstone of Oronoco, Montana, who was also on multiple injections. “If you’re keeping track,” she said, “you shouldn’t have that big a problem with hypoglycemia.” All four people we spoke to are staying on multiple injections.

The remaining three people we interviewed were on pump therapy, which involves intensive blood glucose testing and insulin adjustment, and all agreed that the pump offers excellent control. Having the pump attached 24 hours a day was the most common complaint; it got in the way. It offered a more flexible lifestyle, however, which seems to outweighed the inconvenience. “I could maintain a busy lifestyle; I didn’t have to work around an insulin schedule,” said Nancy Schnack of Durant, Iowa. She could receive a dose of insulin fifteen minutes before a meal without having to carry around a syringe and insulin vial, or give herself a shot. None of the three are changing to another type of therapy.

There are other factors besides the benefits of a certain therapy that influence the decision of which type of treatment to use, and the biggest of these is money. It’s great to go on a pump or multiple injections, especially when the supplies are free, but now that the study is over the people involved in the DCCT are going to have to fend for themselves. It’s not going to be easy. One major advantage that conventional therapy has over intensive therapy is that in the short run it’s cheaper (until the complications set in…); someone testing their blood sugars four times a day can expect to spent $70 a month on strips alone. Insurance usually covers some of this, but not all, and insurance is hard to obtain. Many of the people we talked with were uncertain of their financial future: they could adhere to the rigors of intensive therapy, but not the financial drain.

[Editor: The DCCT is the first step. It is an important achievement that will alter the face of diabetes care, but it is only a step. By itself it is not enough. We are reforming the treatment of diabetes, next we must reform the financial industry that surrounds diabetes care, we must make these new treatments available to everyone, not just those who can afford it.]

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