Letters to the Editor

April 2006

Apr 1, 2006

Readers Respond to Insulin Article

Thank you for your article “And Then There Were Some” (February 2006). Although you surely stepped on some toes, it was a topic that needed to be addressed. Your article has opened my eyes to the agenda of the pharmaceutical companies. I would not have found that information in any other publication. Your article has given me incentive to study the different kinds of insulins and the side effects of long-term use of each of them more thoroughly. My admiration for Dr. Bernstein has also increased, as he “tells it like it is.”

Bobbie Roberts
Wibaux, Montana

I feel heartbroken and angry at the loss of Ultralente insulin, the dependable, stable insulin I have used for 20 years. When Lantus first came on the market, I was impressed by the promises made for it, and I did try it—briefly—and became very sick. Happily I still had my old reliable Ultralente. I was surprised that many people switched to Lantus based on the promise of only one injection a day, only to find later that they had better control with two shots a day—just as with Ultralente. Sanofi-Aventis did a great job marketing Lantus, publishing only the comparisons to NPH. And what about the fact that it costs twice as much.

I have been appalled at the lack of true inquiry into this subject by diabetes publications, and by the relative apathy of most diabetics, who have switched to Lantus or the pump. I am glad those options are available, but in the long run, we all lose when we have fewer choices.

Mary Rose
Longmont, Colorado

It was very disheartening to read the articles pertaining to insulins being discontinued. I am a diabetic of 48 years. I, too, remember when insulin cost three dollars per bottle. I used Lente as well as Ultralente and Regular. For the last eight years, I’ve been on the pump using Humalog. I recently retired and have an 80-acre hobby farm. Traditional farm work with a lot of exercise is part of my routine. Sometimes I disconnect my pump and switch to Lantus, utilizing Humalog as a bolus. I am doing just fine.

You may ask, why do I disconnect my pump? During hay season, it gets in the way, and it may accumulate hay dust. And when I am trimming my horses’ hooves, I have to bend over, almost touching my nose to my knees, and my cannula will sometimes bend. So, depending on my activity, I sometimes switch to Lantus, but most of the time I am a pumper.

My point is this: I have a choice. Even though a number of endocrinologists can’t agree on the use of new insulins, people with diabetes should have a choice. We all know we have barriers in other areas such as health insurance, life insurance, employment and so on. The influence of corporate America and their powerful lobbyist groups in Washington frighten and frustrate me.

Unfortunately, Scott King’s suggestion, to find a drug company that will produce human and pork insulins, is unrealistic. Let’s face the fact that it all boils down to money. How unfortunate that the majority of diabetics have to be “puppets” of corporate America.

Susan Erlandson
Coon Valley, Wisconsin

I’ve had type 1 diabetes for the past 20 years. I started on Regular and Lente insulin, and about six years ago, I went on Humalog with UltraLente. My last A1C was 5.5%. I’ve been very happy with the Humalog-UltraLente combination.

However, my doctor has been pushing me to switch to a pump or to Lantus. I really don’t want to go to either option. If it’s not broken, why fix it? I am very upset over Eli Lilly’s decision to eliminate Ultra-Lente from the market. After reading your article about the possibility of analogues causing cancer (“Does Insulin Cause Cancer?”, February 2006), I am beside myself with worry. It takes more than a few thousand customers to change the mind of Big Pharma companies. Other than calling Lilly’s customer support department, what is there to do?

Jennifer Nowak
Waltham, Massachusetts

21 Million and Counting

The so-called diabetes epidemic is a multifaceted problem and cannot be linked to any one cause, but to a combination of causes.

With regard to the article “Recipe for Disaster” (January 2006), the fast-food chains, the vending machine dilemma in the schools and the lack of exercise are all culprits. We are victims of our society. Help begins at home! We must make adjustments in the home concerning the proper diet and exercise for our children and adults. The fast-food chains are responding to a demand, but they have gone overboard. Who needs a Double Whopper?—That’s a pound of ground beef with all the trimmings. Why does the fast-food business continue to offer such dietary disaster? Could it be the profit motive of free enterprise in lieu of social responsibility? School menus are frequently developed based on using government commodities to help hold down the cost.

And last, you must keep the perspective of increasing cases along with increasing population and lack of leadership from government. Bring back President Kennedy’s physical fitness push for health. It worked for a while.

Kenneth E. Zirkle
Rantoul, Illinois

Your magazine is generally not in my area of interest, but my wife is very impressed with it and reads it all the time. Normally, I just catch your cartoons in the back, but I happened to read this issue in depth, including “Recipe for Disaster,” and your editorial page, in which you ask readers who we think is responsible for the diabetes epidemic, and I was moved to comment.

In the editorial, you rounded up the usual suspects: government officials, corporate America and so on, and each certainly plays their part. But who allows these government officials and corporations to get away with it? Ultimately, the responsibility is ours, or, as Pogo once said, “We have met the enemy and he is us.”

As a society, we do not have the collective intelligence and critical thinking skills necessary to vote in favor of people who will truly represent our interests. We also do not “vote for” media who are willing to risk alienating their advertisers by asking the tough questions and honestly reporting on answers. The media trains the spotlight for weeks on some poor girl in Aruba who was kidnapped, or the marriage or divorce of some celebrity, cleverly avoiding the risk of angering the corporations who push sugar on our kids. Which topic is more relevant to us?

If you want to make a difference, start getting overtly political in every issue. List all the politicians who accept contributions from pharmaceutical companies in each issue. In fact, perhaps you should call them “bribes,” because that’s what they are. Highlight their votes against our common interest and for corporate America. Get people to wake up and vote for their common interest rather than unconsciously pulling the lever for the party they’ve been voting for all their lives.

Paul Kinzelman
Peralta, New Mexico

Competitive Bidding

Regarding Nicole Johnson Baker’s column about competitive bidding (“Competitive Bidding: The Wrong Approach for Diabetes,” January 2006): I sympathize with the author, but I disagree with her conclusions.

The reason that test strips cost a dollar each instead of 5 or 10 cents is in large part because of the “any device at any price” purchasing system in place today. While her assertion that “choice in diabetes care is critical” may be accurate, it’s also important to appreciate that the uninsured and underinsured among us have little choice when it comes to such care. If Medicare’s criteria are smart enough and its pricing pressure is strong enough, it could bring over-the-counter prices within reach of many more patients by reducing the profiteering for what is essentially a commodity item.

If Baker wants to ensure that her grandmother—and all grandmothers—get the best care, she might be better off embracing the cost reductions and participating in Medicare’s public comment process.

Martin Jensen
Tulsa, Oklahoma

Diabetes in the Workplace

Deanna Glick’s article, “We Can Work It Out: Managing Diabetes in the Workplace” (December 2005), mis-states a comment I made during an interview for the article.

The article quotes me as having said that “according to the Supreme Court … if a diabetic is being treated—taking medication or insulin, for example—he or she is not limited in any major life activity and is not considered to be disabled.”

The reference erroneously characterizes comments I made concerning the impact on people with diabetes of three 1999 Supreme Court decisions (collectively referred to as the “Sutton trilogy”). These cases held that “mitigating measures,” which include medications and insulin, must be considered in determining whether someone has a disability under the first of the three parts of the ADA’s definition of disability—that is, an impairment that substantially limits one or more major life activities.

I am certain I never said that anyone who is being treated for diabetes is automatically excluded from the definition of “disability.” This is inconsistent with the longstanding policy of my agency, both before and since the Sutton trilogy, that determinations of disability must be made on a case-by-case basis, and it is inconsistent with the position the Supreme Court took in the Sutton trilogy as well.

In the many presentations and interviews I have given concerning the Sutton trilogy, including my interview with Ms. Glick, I have emphasized that where mitigating measures do not eliminate the effects of an individual’s impairment or impose additional burdens that are themselves substantially limiting, the individual may still be covered under the first part of the ADA’s definition of “disability.” Indeed, I frequently mention Fraser v. Goodale, the case discussed at some length in Ms. Glick’s article, and several other similar cases involving people with diabetes whom courts have found to be protected by the ADA.

While there is much useful information in the article and the discussion of Fraser makes some excellent points, the mis-characterization of my comment about the Sutton trilogy may lead many readers with diabetes to conclude they have no legal rights. I therefore request that you issue a clarification indicating that although Supreme Court decisions may make it more difficult for some individuals who use insulin to establish coverage under the first part of the ADA’s definition, it is still possible to do so where the insulin is not fully effective in controlling the diabetes or where the measures needed to control blood sugar and insulin levels result in substantial limitations in activities such as eating or caring for self.

You might also want to add that individuals with diabetes who may have no current substantial limitation may be covered if they have a past history of a substantial limitation or if they are “regarded as” (i.e., treated by) their employers as substantially limited.

Concerning the comments attributed to my colleague Joyce Walker-Jones, it is possible that some readers may misconstrue them as stating that the Equal Employment Opportunity Commissioner (EEOC) was involved in drafting the ADA. We did not draft the legislation, though we did issue regulations interpreting the ADA’s employment provisions pursuant to statutory directive. I would ask that you consider substituting the word “Congress” for the word “we” in the one sentence of Ms. Walker-Jones’ comments that refers to the writing of the ADA.

Thank you for your kind attention to this matter.

Christopher J. Kuczynski
Assistant Legal Counsel
EEOC, ADA Policy Division

Islet Transplantation Cured My Diabetes

I was diagnosed with type 1 diabetes at 14 years of age. After being diagnosed with the disease and hospitalized, one of the doctors teaching me how to administer insulin injections said, “This disease is incurable, and you will have to take insulin injections for the rest of your life.” I must admit, I hoped what the doctor said was untrue or I could somehow prove him wrong (I have always been pretty stubborn).

Despite all the hope I had, I was controlled by the disease for 16 years—fighting each day to be as normal as I could be.

This is where the story gets good.

The hopes and prayers I had for a normal life as a teenager came true this year thanks to the miracle of modern medicine. It is unbelievable but true—my life as an insulin-dependent diabetic ended in October 2005. On June 24, 2005, I had my first successful islet cell transplant at New York-Presbyterian Hospital/Weill Cornell Medical Center in New York City. In islet cell transplantation, insulin-producing beta cells are taken from a donor’s pancreas and transferred into a person with diabetes. Once transplanted, the donor islets begin to make and release insulin, actively regulating the level of glucose in the blood. The patient is required to take immunosuppressive drugs as long as the cells continue to work.

Although I was insulin independent after one infusion, I still struggled to keep my sugars within the “normal range” by diet and exercise alone. I had a second islet infusion on October 28, 2005. I finally have the perfect amount of islets, and I have not had to take insulin since October 28th. I finally remember what it is like to be free from this disease. As my days without insulin injections, hypoglycemic unawareness and hyperglycemia continue, I am reminded why more research is necessary to turn this experimental treatment into a cure, and I know my personal story can help. I am currently the only insulin-independent islet patient in the state of New York.

This procedure and my normal blood sugar readings have given me more hope than I ever thought possible. Hope is what keeps most diabetics pressing on and taking care of themselves—hope for a cure and hope for better control. Since achieving insulin independence, I also represent hope to diabetics—hope for a cure!

I think islet transplants should be shared with all diabetics. Everyone who hears my story is so inspired.

Amy D’Agostino
New York, New York

Poll Results

Q: Have you ever purchased your diabetes supplies through a supply store?

  • No = 64%
  • Yes = 36%
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Categories: A1c Test, Blood Sugar, Diabetes, Diabetes, Food, Insulin, Lantus, Letters to the Editor, Type 1 Issues

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