Letters to the Editor

Feb 1, 2000

The Freedom to Operate a Vehicle

I am an insulin pumper. Until recently, I drove a truck that required a license that was regulated by the Department of Transportation (DOT).

Upon my last physical, my insulin dependency was noted. As soon as the information reached my company's safety division, I was pulled off driving. While I have had no hypoglycemic episodes, it seems that the DOT has a regulation denying insulin-dependent diabetics from being qualified to drive heavy motor carrier vehicles. With all the advancement in treatment, I can't believe they are still so cut-and-dried on the issue.

Has anyone else out there had an experience like this or does anyone have knowledge of the possibility of this regulation being examined and changed? I can't help but feel I'm being discriminated against. The Americans With Disabilities Act even says we can now medicate our disease and live a normal life. How can the DOT be so blinded by the new and remarkable advances in diabetes?

Sheri Hallum
West Helena, Arkansas

Editor's Note: We asked Shereen Arent, national director of legal advocacy for the American Diabetes Association, to address this issue:

Unfortunately, it is true that current federal law prohibits anyone who uses insulin from obtaining the commercial drivers license needed to drive most vehicles that weigh over 26,000 pounds or that are used to transport 16 or more passengers. While this law applies throughout the country, states are permitted to grant waivers allowing people who use insulin to drive commercial vehicles within that state. Most states have some sort of a waiver program. Arkansas, where Ms. Hallum lives, does not. In short, she could lose her job and have no legal grounds to fight it.

The American Diabetes Association agrees with Ms. Hallum that the federal law is unfair. It is our position that no one should be denied a job for which that person is otherwise qualified simply because of his or her diabetes. This applies to drivers as well. The Association has worked for years to overturn the so-called "blanket bans" that are sometimes applied to people with diabetes who use insulin. In 1996, we prevailed on the Federal Aviation Administration to overturn a 36-year rule prohibiting people who use insulin from flying small private aircraft. Since this decision, we have been working to end the blanket ban imposed by the DOT relating to the licensing of commercial drivers.

In 1998, the Association succeeded in getting legislation passed that we hope will soon end this blanket ban. This legislation requires the DOT to study the feasibility and safety of creating a new program to allow some drivers who use insulin to obtain commercial driver's licenses. DOT must then report to Congress as to whether a program can be established without compromising safety and, if so, provide a description of the elements of such a program. We anticipate that this would be a protocol, much like the one established for private pilots, that sets out certain medical conditions that the applicant for a license must meet, as well as listing actions the driver must take to ensure safety while on the road.

DOT's report to Congress was due at the end of 1999. If DOT proposes setting up a protocol for drivers who use insulin, the public would be given the opportunity to comment on the proposed program. We do not believe that DOT or anyone else can successfully argue that such a program would have an adverse impact on highway safety.

The American Diabetes Association will continue to fight for this right and fight other job-related discrimination until all employers realize that with minimal, reasonable accommodations, people with diabetes can do virtually any job.

Shereen Arent
National Director of Legal Advocacy
American Diabetes Association

Islet Cell Transplants Like Demijohn's are Long Overdue

Thank you for the article in the December 1999 issue of Diabetes Health on Jackie Demijohn's islet cell transplant. It was so encouraging. This technology is so long overdue. I first heard of islet cell transplants as far back as 1981, but getting concrete information is like pulling teeth. I get nothing but negative responses regarding this from my health care professionals. Are they afraid they'll be out of business if my diabetes is cured?

Laveda Fleming
Cincinnati, Ohio

I don't think that loss of business is the reason. Your doctor probably is a victim to having high hopes herself. Over the past several years, many promising researchers have reached dead ends or met with failure. Then it was announced that islet transplants were much more difficult than anyone had ever imagined. Jackie Demijohn's transplant using bone marrow is a small triumph. As the article states, she still takes insulin.

Many of us have had our hopes dashed over the years since 1981. I suspect some health care professions have now taken a more cautious attitude when promoting the benefits of islet transplantation.

Scott King

Are Tattoos Taboo?

I am 40-years-old and have been a type 1 for 26 years. I recently started using the MiniMed 508 (I love it!). Anyway, I'm writing in response to Scott King's December 1999 column, "Not the Rose Tatoo."

I wear a medical alert ID bracelet which says, "I HAVE DIABETES." I am a registered nurse who rarely sees patients with medic alert identification. Most seem uninterested in obtaining one. But I love your article on the tattoo. I'm thinking of getting one myself as a diabetes ID. I wonder if emergency personnel are trained to look for the tatoo? I'm interested in finding out if there is any danger for people with diabetes who want to get tattoos.

Barb Courtney
Merrit Island, Florida

Editor's Reply: The following advice ran in Diabetes Health in March 1997:

There's no harm in getting a tattoo as long as you take the necessary precautions. First of all, make absolutely certain that you go to an accredited tattoo artist. Your State Board of Cosmetology may grant certificates to tattoo artists who fulfill the necessary hygienic measures.

As a person with diabetes, there are certain places you shouldn't have tattoos: places with poor circulation such as ankles, lower legs and buttocks. Also, stay away from areas where you take your insulin shots such as the abdomen, arms or thighs.

Remember, if you decide to get a tattoo, you should think twice about the consequences. At least 50 percent of the people who receive a tattoo regret it later. A tattoo removal may end up costing you several hundred dollars, and can result in an unwanted scar.

S. William Levy, MD
Clinical Professor of Dermatology
UCSF Medical Center
San Francisco

I have been a type 1 for 26 years. Although I resisted a wearing medical alert ID for a long time, I have been wearing a bracelet for the past 10 years. When I read Scott King's article about Chris Newman in the December 1999 issue of Diabetes Health, I found it amusing. I used to be involved with the Emergency Medical Services in Pennsylvania and I know that paramedics are NOT trained to look for tattoos. When an initial check is done on a person, we are trained to feel for abnormalities. You can't feel a tattoo. We are also trained to look for necklaces and bracelets. Depending on the situation, the person's clothes may not come off until they get to the emergency room. Nevertheless, having some form of ID, even a tattoo, is better than nothing. I have nothing against tattoos-I have 5-but I would not get one as a medical alert ID.

Sheila Joyce
Newtown, Pennsylvania

First, I want to say what a wonderful publication Diabetes Health is. It is truly different from any other diabetes magazine I have read, and much more up to date. Not a rehash of the same old thing, which I have found in the other publications.

I would like to respond to Scott's column, "Not the Rose Tattoo." I have had diabetes for nearly 37 years and can only recall one incident in which I lost consciousness in public and had to be revived by others. I was in college at the time, and had just stepped off the elevator, 15 feet from the cafeteria, where I was going to eat dinner. As I was coming to, I remember looking down at my wrist and seeing my Medic Alert bracelet. I had it on.

Since I can tolerate very low and very high blood sugars, I do not wear my Medic Alert out of fear of hypo- or hyperglycemia. I wear it for the peace of mind it gives me in the event that I am involved in an accident. When precious minutes, or even seconds, count, it seems only sensible to wear a medical ID. I had thought about getting a "medical tattoo" to go with the five I have, but I didn't think I would be able to find one that was as fun and decorative as I would like, that would still serve the intended purpose.

As for parents who are offended by the tattoo, it seems to me that a person willing to wear a medical tattoo is about as comfortable as they can possibly be with the fact that they have a permanent medical condition. Way to go, Chris!

Dorie L. Gordon
Washington, D.C.

I read Diabetes Health with interest every month. I agree with you that a tattoo would be great, because it is often easy to forget to put on your medical ID. Keep up the good work.

Nadine Kiefer
Columbus, Georgia

Don't Settle for an HbA1c of 8%

I just finished reading the editorial in the November '99 issue of Diabetes Health. Under the heading,"High Blood Sugars are the Main Culprit," it reads, "...don't stop pestering your doctor until you get a treatment plan that keeps your...HbA1c lower than 8%." This comment is inconsistent with the statement that "high blood sugars are the main culprit." An A1c of 8% corresponds to an average 3-month blood sugar of 220 mg/dl. Most of my patients are walking around with A1cs in the 4s and 5s. An A1c of 6 is considered by my patients to be a treatment failure. In fact, most of my new patients, since they have already put themselves on low-carbohydrate diets, come here for the first time with A1cs that are less than 7.5%.

With the tools that we have today, there is no justification for A1cs to be anywhere near 8%.

Richard K Bernstein, MD, FACE, FACN, CWS
The Diabetes Center
Mamaroneck, New York

Feedback on Supplements and a Warning

Thanks for all the great information on supplements. My nutritionist says "no" to magnesium, potassium and zinc, as they can unbalance minerals. Ditto for niacin. But she liked all your antioxidant suggestions, plus the good minerals. Also, she advised against Wha San Tea.

John Maybury
Pacifica, California

Diabetes Health's "Bedside Manner"

I subscribe to three diabetes magazines, including Diabetes Health. I find that DI consistently has the best "bedside manner." By that, I mean I look forward to reading it cover to cover. All three magazines probably carry similar information, but the presentation and readability of DI makes me want to pick it up.

Bill Hogate
Richmond, Virginia

Natural Animal Insulin Stirs up a Response

It was fortunate that the December 1999 Diabetes Health reprinted the article from The Indianapolis Star newspaper on the discontinuation of animal insulin.

Having been a type 1 for over 24 years, I was enraged to hear the statements made by several prominent figures within the diabetes community concerning animal insulin and hypoglycemia unawareness. How can they say such things? No two diabetics are the same. While I see the merits of biosynthetic insulins, some people with diabetes have learned the hard way that this type of insulin is incompatible with their body. I am living proof.

I have been an endurance athlete for over 15 years. Over the last 3 to 4 years, I was unable to control my blood sugar levels with human insulin and progressively lost the strength to train and compete. It eventually got to the point where all I could do was walk. I never felt well, people noticed that my demeanor had changed, I had bags under my eyes, experienced heart palpitations, felt a "shakiness" all the time, and was always fatigued.

At one point a friend of mine suggested going back to natural animal insulin. Within 24 to 48 hours of going back on natural animal insulin, my BG levels began to stabilize and my normal, "upbeat" personality was regained. Most importantly, I was able to regain my normal training levels, which biosynthetic insulins prevented me from doing.

For Dr. Holcombe to say animal insulin "is antiquated" is ludicrous! What does he know? Does he have diabetes? Dr. Bruce Zimmerman cites that hypoglycemic unawareness "is not a property of the source of the insulin." Well, I'd like to respond by saying that many times, with human insulin, I sensed a low only when I reached 25 to 30 mg/dl. On natural animal insulin, I begin to sense hypoglycemic reactions coming on at around 100 mg/dl. Many times I will begin to sweat or physically shake when I reach 50 to 60 mg/dl.

I am not a doctor, but I am a person with diabetes living with this disease everyday. I guess I should know what works and what doesn't work, but others in the medical arena think we're just a bunch of "crazies."

I don't discredit the use of biosynthetics, as they are wonderful for the many people with diabetes who swear by them. But I advocate the availability of all insulin types, natural animal and biosynthetic, so that all people living with diabetes can have a fighting chance and lead a normal, healthy life.

Christie P. Grimstad
Irvine, California

As a 50-year-old woman who is a 20-year insulin veteran, I read with interest your story in the December issue regarding Lilly's discontinuing the production of Iletin 1 ("Lilly Draws Wrath Over Discontinued Insulin").

I felt great sympathy for the folks like Linda Vernier, David Groves and Dr. Andrew Farquhar, but fighting to maintain the availability of beef insulin is not the answer to their difficulties. For years, I too resisted the switch to biosynthetic human from the natural pure pork Iletin I had been using since 1981. Each time my endocrinologist suggested switching to human, I would point out that since its peak action time and duration were shorter than pork's, it would be even harder for me to achieve good control since pork Lente was already a little too fast-acting for my needs.

But as the years passed, it became harder and harder for me to obtain the pork insulin. The pharmacies and their wholesalers just didn't want to bother carrying it. It would often take days to fill an order. Then I'd be stuck with insulin which was just a month or two away from its expiration date. So I accepted the inevitable and switched to human Regular & Lente.

As I had predicted, this was bad news for my control. If I took 1 unit of human Lente at bedtime, my pre-breakfast blood test results would range from 240 to 260 mg/dl. If I took 2 units of Lente at bedtime to get a better morning reading, I would have a hypoglycemic reaction at 3 a.m. Several of these were quite scary since I didn't wake up before the reaction was well advanced.

Similarly, I found that the human Regular and Lente I took at breakfast peaked too soon. Usually, I ended up with mid-afternoon readings above target. But as I struggled to control them with more Lente, I would have insulin reactions at 11 am.

So while I share their frustration over the loss of animal insulin, this is where Vernier, Groves, Farquhar and I part company. I didn't look back and pine for my animal insulin. I began to pay more attention to the articles in the diabetes magazines that quoted the users of insulin pumps enthusiastically bragging about the control they were getting with their new pumps. When my doctor had first suggested pump therapy, I scoffed, highly reluctant to have such a device inflicted on me 24 hours a day. But each article quoted more and more ecstatic pump users with their stories of blood glucose triumph. And these folks weren't whining about wearing a pump all day everyday, they were downright cheerful about it.

I began investigating pump therapy in earnest. I talked to my doctor who confirmed that his pump patients did, indeed, have much better control after going on the pump. He gave me videos produced by Disetronic & MiniMed. I logged onto the pump companies' Web sites. I read more magazine articles.

It became clear to me that the short action times of the new biosynthetic insulins, which were the bane of my injection therapy, were ideally suited to pump therapy. Since August I've been wearing an insulin pump using the ultra fast-acting Humalog.

As predicted, my control has improved dramatically. My pre-breakfast tests no longer hover between 240 and 260. Now they range between 80 and 105. My mid-afternoon tests are typically between 110 and 135. And best of all, I have completely eliminated those frightening hypoglycemic episodes at 3 a.m.

Before pump therapy, I'd lost much of my ability to detect the early signs of hypoglycemia. But, by achieving tighter control with the pump, I've significantly reduced the number of insulin reactions I experience. This decrease in reactions has resulted in the recovery of my ability to feel the early-stage symptoms I had lost.

As a result of my experience, which is quite similar to that of Vernier, Groves and Farquhar, my advice is to not look back. Rather than put yourself through effort, stress and anxiety trying to make Lilly or the FDA change course, you'll be better off looking forward. Take seriously this opportunity to explore the option of pump therapy. Don't do as I did and waste years experimenting with human injection therapy while your control deteriorates. The medical establishment will support your efforts to begin pump therapy and the odds are excellent that you'll achieve better control, fewer hypoglycemic reactions and a renewed ability to sense insulin reactions when they occur.

No one likes change. But since this change has been thrust upon us, whether we'll sigh for the old days or welcome the new dawn with renewed hope for a better tomorrow is up to us.

Deborah L Moore
Somers, New York

Dave Groves, Dr. Andrew Farquhar and Linda Vernier were invited to submit a response to Ms. Moore's letter.

The real issue, I believe, is one of choice. It is not about "looking back and sighing for the old days." It is a matter of tailoring the most appropriate insulin regimen to a specific individual. In my own case I have been using Humalog since it first became available in Canada. Combined with beef-pork NPH as a basal insulin, this has been the best combination for me, enabling me to get a consistently near-normal HbA1c while avoiding any severe hypoglycemic episodes.

We are each an experiment of one. What works for me may not work for someone else. As a physician it is my responsibility to make sure that patients know what their options are and understand the pros and cons of each of these options. Patients always ask what my own preferences are, but I never assume that what is best for me will necessarily be so for them. Diabetes care must be individualized. For some patients I firmly believe that the pharmakokinetics of natural animal insulin make a better basal insulin than currently available biosynthetic human insulins. All involved with diabetes care know full well that a good basal insulin is sorely needed. Pharmaceutical companies are frantically trying to be the first to get such a product on the market. Many people have switched to human NPH with little or no trouble, but some will certainly experience the problems so well described by Ms. Moore.

Ms. Moore states "the medical system will support your efforts to begin pump therapy." That is correct, but pump therapy is certainly not for everyone. An individual should not feel guilty if they decide it is not for them.

A very major issue is one of expense. An insulin pump costs $5,000. Most insurance companies will pay a portion, but the user may still be left with a significant expense. For those with no medical insurance, pump therapy is really not an option.

Intensive diabetes management is demanding, complicated and costly. It must also be highly individualized. Therapeutic options are important. I feel the demise of long-acting natural animal insulin simply removes an important option for a significant number of people.

Andrew Farquhar, MD
Kelowna, B.C., Canada

I have read Ms. Deborah L. Moore's letter in response to "Lilly Draws Wrath Over Discontinued Insulin" with a deep sense of dismay and bewilderment. I cannot share her defeatist view on the issue of natural animal insulins and find her suggested resolution to this international crisis implausible.

For the past decade or more, the price of being diabetic has inflated at a rate over twice that of the generally heavy inflation in medical care costs for the US population at large. I have read in articles in Diabetes Health and elsewhere that at any point in time roughly 30 percent of US diabetics have been uninsured for a year or more within the past year. Sadly, as Robin Harrison pointed out in her article last year, it is the uninsured and elderly diabetics who are most likely to be faced with the problem that Ms. Moore suggests we fix with pump therapy. This is primarily because, until last year, the natural animal insulins were roughly 20 percent cheaper than the synthetics. Whether caused by Lilly or supply anomalies, the price of porcine insulin has suddenly doubled and tripled with the removal of beef-pork insulin.

I am thrilled that Ms. Moore is so happy with her pump. Not all people with diabetes are or would be.

Eli Lilly admits that 40,000 US diabetics are still using natural animal insulin. This number far understates the true need for beef, but forcing them to become pump users will raise the annual cost of diabetes by at least $110 million a year for the rest of their lives. The United States has only about 10 percent of the world's diabetic population. Those with Ms. Moore's good fortune may feel that such therapy is free. It is not free and many insurance companies and HMOs still bar people with diabetes from using pump therapy. The uninsured fair even worse.

Novo Nordisk tells us, "Historically, improving glycemic control with soluble human insulin has been associated with an increased risk of hypoglycemia." I can improve my HbA1c by 2 points on my imported insulin-beef PZI, also called the "poor man's pump." I take 2 injections per day, without hypoglycemia problems. When I took 3 and 4 injections per day with human insulin, I had such severe episodes of hypoglycemia that I averaged at least one serious auto accident a year.

There are at least two firms willing and able to sell the beef-pork and pork insulins we need (Biobras in Brazil, and CP Pharmaceuticals in Wrexham, UK). It seems to me that Ms. Moore and others could help us best by convincing the FDA to let us import the needed insulins in bulk rather than force us all to buy pumps.

David G. Groves
Birmingham, Alabama

18 years after its introduction, biosynthetic human insulin has still not been shown to have any benefits over natural animal insulins. But it has been shown to have disadvantages for some people, a figure estimated by the British Diabetic Association to be as high as 20 percent of people using insulin.

In reality, the people resisting the change to biosynthetic human insulin are not simply looking back, but in fact they are looking forward and seeing the potential consequences of allowing pharmaceutical companies so much power and control over our health and welfare. Welcoming the new dawn with renewed hope for a better tomorrow does not mean that we should compliantly accept changes without evidence of benefits and changes that may not be in the best interests of consumers. For me the hope for the future is that we achieve recognition of the expertise and knowledge of the consumers, consumer equality in the doctor/patient relationship, and greater involvement of consumers in decisions about their healthcare.

Jenny Hirst
Insulin Dependent Diabetes Trust International
United Kingdom

The following is a recent position statement from the Juvenile Diabetes Foundation (JDF) on animal insulin:

The recent decision by US companies to discontinue the production of beef insulin has caused great concern among some people with diabetes in the United States who currently are using this type of insulin. JDF recognizes that most people who take animal-derived (i.e. beef and pork) insulins can be safely switched to synthetic human insulin. However, we also acknowledge that good medical practice dictates that decisions concerning the type of insulin used by people with diabetes should be made by the patients and their physicians and that, if animal-derived insulin is deemed appropriate, this option should remain available to them. In this regard, JDF will continue to provide information on obtaining animal-derived insulin manufactured outside of the United States to interested patients and physicians. To learn about the process and procedure for personal importation of beef insulin and for more information on this issue, please contact: The Insulin Dependent Diabetes Trust U.S. (1720 Guess Rd., Suite 40 Durham, NC 27701-1165, (888) 253-7144 (toll-free U.S.), Online: www.diabetes.pair.com.

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Categories: A1c Test, Blood Glucose, Blood Sugar, Diabetes, Hypoglycemia Unawareness, Insulin, Insulin Pumps, Letters to the Editor, Low Blood Sugar, Novo Nordisk

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