Some diabetics sick of treatment

[okarol]

Some diabetics sick of treatment

Many with illness would trade a few years of life to be spared taking insulin

By Deborah L. Shelton
Tribune staff reporter
September 27, 2007

William Haynes refuses to go on insulin.

The retired Chicago UPS driver was diagnosed with Type II diabetes 15 years ago and was supposed to start giving himself insulin injections two years ago. But he says swallowing daily pills for his diabetes, high blood pressure and high cholesterol is enough of a chore.

As a boy, he helped his mother and grandmother with their insulin shots. Now 59, he has decided: "I don't want to be hooked up on insulin for the rest of my life."

Chronic illnesses account for 70 percent of all deaths in the United States, according to the federal Centers for Disease Control and Prevention. But many of those living with the diseases are turning their backs on treatments they consider too confusing, too time-consuming or too physically uncomfortable.

In a new study being published Thursday, a group of University of Chicago doctors found many diabetics believe that the inconvenience and discomfort of their treatments, especially multiple daily insulin injections, were as bad as the complications that can result from not treating their disease.

On average, patients in the study ranked the burden of comprehensive diabetes care and intensive glucose control as on par with experiencing heart-related chest pain, diabetic nerve damage or kidney damage.

Some patients, 10 percent to 18 percent of the total, said their treatments were so arduous that they would be willing to die sooner -- some said up to 10 years earlier -- if they could stop their medications. Lead author

Dr. Elbert S. Huang said the true number of people who felt that way might be higher because those interviewed already were receiving regular medical care.

The study, appearing in the journal Diabetes Care, is the first of its kind to examine patient perceptions of quality of life on diabetes treatments and their thoughts about living with diabetes-related complications.

A random sample of 701 adults who had Type II diabetes were interviewed between May 2004 and May 2006. They were being treated at clinics affiliated with the University of Chicago or in private physician offices affiliated with MacNeal Hospital in Berwyn.

Patients were asked to express their preferences in a series of trade-offs, such as six years of perfect health versus 10 years with an amputation.

The complications patients most wanted to avoid were the end-stage complications, especially kidney failure, major stroke and blindness. They were slightly less concerned about amputations or diabetic retina damage, and even fewer were worried about heart-related chest pain and diabetic nerve or kidney damage.

Twenty-three percent of the study patients had already suffered a complication such as eye, foot or kidney disease, and 30 percent had had a heart attack or stroke.

"Some of this might be lack of education and people not understanding the disease process," said Dr. Holly Mattix-Kramer, a specialist in preventive medicine and kidney disease at Loyola University Chicago Stritch School of Medicine. "We need to do a better job educating our patients about what preventive care means and how it may affect their life span."

An estimated 21 million people currently live with diabetes in the U.S. An additional 54 million have pre-diabetes.

A typical diabetes patient is prescribed two to three medications to control blood sugar, one or two pills to lower cholesterol, at least two pills to reduce blood pressure and a daily aspirin to prevent blood clots. Daily insulin injections are often added as the disease progresses.

"There is wide variation in how people view life with drugs," Huang said. "The majority, about 80 percent, can manage. But there is a vocal subgroup of patients who are willing to give up a lot to avoid medication."

Future guidelines for diabetes care likely will include even more medications. Preliminary data from several ongoing clinical trials suggest potential benefits from treating lower levels of high blood sugar, blood pressure and cholesterol.

It's critical for doctors to understand what's going in on patients' minds, said Dr. Louis H. Philipson, director of Kovler Diabetes Center at University of Chicago Medical Center.

"The idea of the here-and-now is very difficult to understand," said Philipson, who was not on the research team. "But the way Dr. Huang's study was designed, you get a sense of whether patients would give up a leg or a kidney, or whether they would measure their blood sugar four times a day and take their insulin. In many cases, they would rather give up a kidney."

Problems with treatment compliance have cropped up with other chronic diseases, such as high blood pressure, heart disease and HIV, which often don't cause symptoms until late in the course of illness. Medicines, on the other hand, can cause side effects.

Huang said the public health community has been largely dismissive of the quality-of-life impact of medications, labeling patients who don't take their prescribed drugs as uncooperative, noncompliant or difficult.

To simplify diabetes treatment, researchers are working on developing a polypill that would combine an aspirin, a diuretic, an ACE inhibitor, a beta-blocker, folic acid and a statin.

But if patients view treatment as a burden, Huang said, health-care professionals are misleading themselves by thinking that better drugs alone are the solution to getting chronic diseases under control. Clinicians also should consider patients' preferences and decision-making.

Mattie Shockley, 62, of Calumet City, takes almost a dozen medications to treat her diabetes and other health problems. But she rarely takes everything as prescribed. Last week, she opted for a medication vacation.

"Sometimes when you take a lot of medication and you feel good, you wonder if you can manage without it," she said.

She didn't.

"I could barely get up the stairs that night," she said.

http://www.chicagotribune.com/services/newspaper/printedition/thursday/chi-diabetes_27sep27,0,3534554,full.story

[paddbear0000]

  They should try living as a type I diabetic for 24 years!!! Their upset by a few pills a day?! I'm sorry, but that attitude just pisses me off!!! I have struggled with this disease for almost my entire life! Maybe instead of shots, they should try using a pump! It makes life so much easier. Being in kidney failure at the age of 30 from diabetes is no walk in the park and by refusing to take their meds, that is exactly where they are heading too. I didn't get the amputations, or other "minor" complications that these people seems to think will happen to them. I skipped right to the kidney failure! I'm a prime example of why they are being STUPID!!! 

Sorry, but this just angers me so much, I want to cry and shake them back into reality! 

[okarol]

Good rant! You should write to the journalist! dshelton@tribune.com

[paddbear0000]

Thanks! I will!

[boxman55]

Man just what we need a whole new group on the waiting list....Boxman

[goofynina]

I think he should spend a day with a dialysis patient in a dialysis chair and i am sure that would get him to take his meds... 

[livecam]

Right on Susie..diabetes is nothing compared to ESRD.  Treating it is a walk in the park compared to sitting on dialysis and stressing over a possible transplant.  Maybe all diabetics who take their disease lightly should be required to spend a day in a dialysis unit.

[Adam_W]

  I agree. I'd MUCH rather just have to take meds to control my disease. The closest I will ever come to that now is if I make up my mind and decide to go for a transplant, and even than it will still be a lot more unpleasant (for me, anyway) then taking insulin and other diabetic related drugs. That being said, I'm not diabetic and I don't entirely know what it's like for diabetics, but I'm pretty sure it's a lot less stressful dealing with it than it is to have to be hooked to a bloody machine just to stay alive. If I could, I'd gladly trade my NxStage machine for some tiny insulin needles any day, (Although I wouldn't actually wish dialysis upon anyone else). OK, time to go take out my HUGE 15G dialysis needles-much bigger than those insulin needles. OK, I'm done with my rant.

Adam

[Zach]

Maybe all diabetics who take their disease lightly should be required to spend a day in a dialysis unit.

Don't worry, they'll be on dialysis in no time.
 

[paddbear0000]

I agree. I'd MUCH rather just have to take meds to control my disease. The closest I will ever come to that now is if I make up my mind and decide to go for a transplant, and even than it will still be a lot more unpleasant (for me, anyway) then taking insulin and other diabetic related drugs. That being said, I'm not diabetic and I don't entirely know what it's like for diabetics, but I'm pretty sure it's a lot less stressful dealing with it than it is to have to be hooked to a bloody machine just to stay alive. If I could, I'd gladly trade my NxStage machine for some tiny insulin needles any day, (Although I wouldn't actually wish dialysis upon anyone else). OK, time to go take out my HUGE 15G dialysis needles-much bigger than those insulin needles. OK, I'm done with my rant.

Adam

I AM diabetic (type 1) and have been for 24 years. AND I AM hooked up to a machine--an insulin pump--24 hours a day, 7 days a week! I have a 2 foot piece of tubing protruding from my abdomen, with a catheter inserted during every activity I perform, every day of my life--during exercise, sleeping, showering, even sex! It's no walk in the park! It's not fun having to test my blood sugar about 12 times a day, getting up in the middle of the night to test it, passing out cold from low blood sugars, feeling tired and sick constantly when your blood sugar is above normal. It sucks having to think "how is this going to affect me?" for EVERYTHING little thing you do , every moment of your day--any bit of exercise, anything I eat or drink, anywhere I go, etc. The fear of dying because of slightly "off" blood sugars. The depression, the friends and family who constantly criticize everything you do or don't do. The fear of passing out behind the wheel, while you are asleep at night, etc. Nor are the numerous doctor appointments a month and lab work, the numerous finger sticks and needles per day! Wait, diabetes sounds a little like dialysis, doesn't it? Having absolutely no child hood because you aren't allowed to go anywhere because of your diabetes! It SUCKS!!! As a lifelong diabetic, let me tell, you, it is NOT a walk in the park!

[Adam_W]

I agree. I'd MUCH rather just have to take meds to control my disease. The closest I will ever come to that now is if I make up my mind and decide to go for a transplant, and even than it will still be a lot more unpleasant (for me, anyway) then taking insulin and other diabetic related drugs. That being said, I'm not diabetic and I don't entirely know what it's like for diabetics, but I'm pretty sure it's a lot less stressful dealing with it than it is to have to be hooked to a bloody machine just to stay alive. If I could, I'd gladly trade my NxStage machine for some tiny insulin needles any day, (Although I wouldn't actually wish dialysis upon anyone else). OK, time to go take out my HUGE 15G dialysis needles-much bigger than those insulin needles. OK, I'm done with my rant.

Adam

I AM diabetic (type 1) and have been for 24 years. AND I AM hooked up to a machine--an insulin pump--24 hours a day, 7 days a week! I have a 2 foot piece of tubing protruding from my abdomen, with a catheter inserted during every activity I perform, every day of my life--during exercise, sleeping, showering, even sex! It's no walk in the park! It's not fun having to test my blood sugar about 12 times a day, getting up in the middle of the night to test it, passing out cold from low blood sugars, feeling tired and sick constantly when your blood sugar is above normal. It sucks having to think "how is this going to affect me?" for EVERYTHING little thing you do , every moment of your day--any bit of exercise, anything I eat or drink, anywhere I go, etc. The fear of dying because of slightly "off" blood sugars. The depression, the friends and family who constantly criticize everything you do or don't do. The fear of passing out behind the wheel, while you are asleep at night, etc. Nor are the numerous doctor appointments a month and lab work, the numerous finger sticks and needles per day! Wait, diabetes sounds a little like dialysis, doesn't it? Having absolutely no child hood because you aren't allowed to go anywhere because of your diabetes! It SUCKS!!! As a lifelong diabetic, let me tell, you, it is NOT a walk in the park!

Wow, type 1 diabetes does sound like it sucks a lot. I didn't mean for my post to sound like I'm downplaying diabetes, but I'm directly complaining about the people who don't take their diabetes treatment seriously. I personally take my health and treatment very seriously, and it sounds like you do as well. I've had my blood sugar drop suddenly, and I ended up in the ER because of it, so I can relate to at least one thing diabetics have to deal with. It just bugs me when people don't take ANY health issue seriously. I hope this clears up what I meant in my rant, err, I mean post.

Adam

[paddbear0000]

I agree. I'd MUCH rather just have to take meds to control my disease. The closest I will ever come to that now is if I make up my mind and decide to go for a transplant, and even than it will still be a lot more unpleasant (for me, anyway) then taking insulin and other diabetic related drugs. That being said, I'm not diabetic and I don't entirely know what it's like for diabetics, but I'm pretty sure it's a lot less stressful dealing with it than it is to have to be hooked to a bloody machine just to stay alive. If I could, I'd gladly trade my NxStage machine for some tiny insulin needles any day, (Although I wouldn't actually wish dialysis upon anyone else). OK, time to go take out my HUGE 15G dialysis needles-much bigger than those insulin needles. OK, I'm done with my rant.

Adam

I AM diabetic (type 1) and have been for 24 years. AND I AM hooked up to a machine--an insulin pump--24 hours a day, 7 days a week! I have a 2 foot piece of tubing protruding from my abdomen, with a catheter inserted during every activity I perform, every day of my life--during exercise, sleeping, showering, even sex! It's no walk in the park! It's not fun having to test my blood sugar about 12 times a day, getting up in the middle of the night to test it, passing out cold from low blood sugars, feeling tired and sick constantly when your blood sugar is above normal. It sucks having to think "how is this going to affect me?" for EVERYTHING little thing you do , every moment of your day--any bit of exercise, anything I eat or drink, anywhere I go, etc. The fear of dying because of slightly "off" blood sugars. The depression, the friends and family who constantly criticize everything you do or don't do. The fear of passing out behind the wheel, while you are asleep at night, etc. Nor are the numerous doctor appointments a month and lab work, the numerous finger sticks and needles per day! Wait, diabetes sounds a little like dialysis, doesn't it? Having absolutely no child hood because you aren't allowed to go anywhere because of your diabetes! It SUCKS!!! As a lifelong diabetic, let me tell, you, it is NOT a walk in the park!

Wow, type 1 diabetes does sound like it sucks a lot. I didn't mean for my post to sound like I'm downplaying diabetes, but I'm directly complaining about the people who don't take their diabetes treatment seriously. I personally take my health and treatment very seriously, and it sounds like you do as well. I've had my blood sugar drop suddenly, and I ended up in the ER because of it, so I can relate to at least one thing diabetics have to deal with. It just bugs me when people don't take ANY health issue seriously. I hope this clears up what I meant in my rant, err, I mean post.

Adam

That's okay. I understand.    I'm just having a really rough time right now and dealing with other issues as well (mostly, a possible pregnancy disaster right in the middle of mid-terms at school!), so I'm a little tense. Today is not a good day.