Letters to the Editor

Jul 1, 1999

Visually Impaired Need Braille on Insulin Vials

This letter is in response to your interview with Nicole Johnson in the April issue. You asked Johnson if she was aware of the issue of putting Braille on insulin vials and how to make your publication accessible to the blind. She stated that she was unaware of such issues that face blind and visually impaired individuals with diabetes. She is not alone. Many are unaware of how blind people manage their diabetes. I am a dietitian working in diabetes education. I am also blind. I would like to share this information with your readers, to shed some light on the subject.

People who are blind or visually impaired can manage their diabetes independently if they have the needed skills and equipment. There are devices that make it possible to draw up insulin without the use of sight. Glucose meters are available with voice output to make self-glucose-monitoring easy. Even the insulin pump can successfully be used by someone who is blind.

On the subject of Braille on insulin vials, there has been an initiative over the last several years, led by the Diabetes Action Network (a division of the National Federation of the Blind), to have tactile marking put on insulin vials so that blind individuals can independently identify their insulins. This is an important issue which continues to be discussed with Eli Lilly and Novo Nordisk.

The new talking meter, the AccuChek Voice Mate, has an insulin vial reader feature that will verbally identify the type of insulin being used, based on Eli Lilly bar codes. However, this does not solve the problem, since there are many blind individuals who use a different glucose meter. It is still important to have tactile marking on insulin vials.

In regards to making your publication accessible to individuals who are unable to read print, I would suggest producing it on audiotape. This format would be useful to the greatest number of people. Braille would also be excellent, but unfortunately many people with diabetes who develop visual problems have a period of time when they are unable to read print and have not yet learned to read Braille. Braille is very easy to learn, but it takes time to develop the skill, just as it is when learning to read print.

The Voice of the Diabetic, published quarterly by the Diabetes Action Network, is available on audiotape. Another technique used by blind or visually impaired individuals to access print material is to use a reader (either paid or volunteer). This works well in many situations, including paying the phone bill.

Individuals seeking more information about blindness can contact the National Center for the Blind, at 1800 Johnson St., Baltimore, MD 21230. The phone number is (410) 659-9314.

Lynn Mattioli
Harbor Hospital

Be Like Greeks, Bearing Color-Coded Insulins

While traveling in Greece last year, I had to purchase insulin. I went to a pharmacy in Athens and purchased a 10 ml. vial each of Regular and NPH. Much to my surprise, the vials were color coded. The Regular insulin vial had a red label, and the NPH a blue label, both distributed by Lilly.

In light of the article in the March issue about colored bottle sleeves, I wonder why Lilly can't simply provide the same color-coded vials here in the United States, as they do in Europe?

Robert Rosin
Seaford, New York

Editor's note: We invited Ed Bryant, publisher/editor of Voice of the Diabetic, to respond.

I think the colored labels, as this reader saw in Greece, would be a good idea for the American market. Colored labels should reduce the overall frequency of insulin vial mix-ups. Sighted people mix up their insulins, but the problem is worse for the blind, or for those losing vision. This is why we really need tactile markings on all insulin vials. I have been working to get such tactile markings onto insulin vials since 1992, but so far, with no luck.

Ed Bryant
Diabetes Action Network
National Federation of the Blind
Columbia, Missouri

Support Stem Cell Research

Our 2-year-old son, Alex, has diabetes.

We enjoyed reading the article on stem cell research. I hope the debate doesn't stop a miracle for diabetes.

Jose and Natalie Toledo
Vacaville, California

Regarding your article on stem cell research in the April issue (page 17, third from last paragraph), I request you print a list of the 70 callous and insensitive members of Congress who want to prevent federal research that could cure diabetes. Printing their states and districts will enable those of us with diabetes and our families to know how to vote in upcoming elections.

Elected officials who use their powerful status to deliberately attempt prevention of research into cures for major diseases like ours, which cause so much suffering and misery, should not be allowed to hold public office again. A pox on these people.

Karl Miller

Editor's note: The Roll Call Web site allows easy access to information on Congressional representatives, with a search function to find your representatives by zip code or name. Once at www.rollcall.com, click on "Hill Directory," then on "Congressional Directory," where you can access your representatives' telephone numbers.

Nutrition Students Want to Nix Noncompliance

Editor's note: The next three letters, regarding Scott King's April column on the term noncompliant, come from three graduate students in nutrition at Long Island University.

I found your editorial, "Don't Call Me Noncompliant," in the April issue, very refreshing. It was good to hear a patient speak out against being labeled noncompliant and then to go further and suggest abolishing the term completely. As a graduate student studying this very topic, I was relieved to hear that others were frustrated by this term. I appreciate Dr. Robert Anderson's description of noncompliance as "two people working toward different goals."

I am a clinical dietitian in an acute care setting. Recently I spoke briefly with a patient about her diabetes and an appropriate meal plan. This patient proceeded to tell me that when she asked her physician about seeing a nutritionist, he told her that was not appropriate for her because she would not be able to follow a diet. Later that day, I made a point to speak to this physician. I explained what the patient had shared with me. I then said that I agreed that the patient wasn't ready to be handed a diet to follow; however, with ongoing nutrition counseling, this patient could benefit by making small changes and, hopefully, one day follow the regimen he suggested. The physician agreed and referred the patient to the nutritionist.

I found it aggravating to have to persuade this doctor to make this referral. Did I have to be the one to remind this doctor of the stages of change? This patient appeared to be in the preparation stage, intending to take action and clearly showing signs of promise.

I could not agree with you more that the term noncompliant should be abolished. As Mr. King stated, this patient just needed "a new approach."

Cindy Schepis, RD
Center Moriches, New York

I couldn't agree more with you, Mr. King, in stating that the term noncompliant should be completely abolished. Presently I am working toward my master's degree in nutrition, and the topic of physicians' labeling patients noncompliant comes up often.

In my courses, we have come to the conclusion that health care professionals need to become more patient centered. Patient centered, defined by Robert Lowes, means that patients are treated as partners and are involved in planning their own health care. At the same time, they are encouraged to take responsibility for their own health. If patients are involved in deciding on their treatment path, they will more likely have a better understanding of what the positive outcomes may be, and they may feel more comfortable talking to the physician about questions or problems they have regarding treatments.

I believe that as newly educated physicians and registered dietitians move into the health care system, we will be seeing more of this patient-centered approach. Until then, patients need to stick to their guns and let physicians know, even if they do not ask, the problems and positive outcomes they are experiencing in treatments.

Lauren Gargiula
Quogue, New York

This letter responds to the editorial, "Don't Call Me Noncompliant!" I, too, would like to label many health professionals noncompliant. Actually, I would really like to get rid of the phrase altogether.

Patients are labeled as deviant when they choose not to do what they are told. I wonder, however, how many physicians take the time to consider whether their demands are reasonable, considering the patient's lifestyle, economic status or education level. If physicians neglect to take the time to get a clear picture of patients and their situations, aren't they failing to complete an accurate assessment? And, if they fail to ask if their recommendations are understood, are they really doing their jobs effectively?

I'm not alone in my opinion. Robert Lowes reported that 51 percent of patients were prescribed medication they didn't think was needed. This shows that either people are hesitant to talk to their physicians, or that physicians fail to listen.

Jennifer Jones
Selden, New York

Drug Addicts and Diabetics Down Under

I live in Sydney, Australia. The diabetic community in Australia has been outraged for years at the hypocritical practise of supplying free needles to drug addicts (to use heroin in Australia is an illegal offence).

I went one day to one of many "caravans" strategically located in our major cities and asked for some needles. I said that diabetes is my affliction and I am addicted to insulin. Without it, I will die. The government-paid social worker informed me that I had to be a heroin addict to receive free needles. "But," I replied, "using heroin, isn't that an illegal practise?" I was instructed, in a threatening manner, to go away.

During the recent state elections held in March of this year, the premier (governor) announced that all diabetics will no longer have to pay for needles/pen needles, should he be re-elected. Well, the premier was re-elected and I will keep you informed as to any development regarding his statement on supplying free needles to diabetics.

Gregg Bustin
Sydney, Australia

Thanks for the April Issue

Thanks for the April issue. Yours is a great publication, with more usable information than I could ever hope for. I enjoyed the letters to the editor, the vitamin article, the editor-in-chief's column about noncompliance, Nicole Johnson, Y2K, and even all the good ads. Keep it coming.

Harold E. Johnson Jr.
Rio Vista, California

America Needs a Voice for Animal Insulins

I am a 32-year veteran of type 1 diabetes, and I'm having a very difficult time with my control, especially with the new human insulins, Humalog and Humulin. I was well regulated on beef-pork insulins, living my life with certainty. Since I've been taking these new insulins (because they are the only thing available to me), I've had a difficult time. Who can I turn to? Who understands the impact for someone like me, who's had this disease for so many years, of not being able to get the beef-pork insulin?

Diabetes Health is something I look forward to reading every month. I appreciate your being advocates for diabetics. Yours seems to be the only voice we have in America.

Bill Perrera
Boise, Idaho

Editor's note: Diabetes Health deplores the continued elimination of insulin preparations. For the past few years, American insulin customers have seen their choices shrink, while in Germany, some 70 insulin preparations still exist to help people find the ones that best suit them.

Like the need for many different kinds of antibiotics, pain relievers and birth control pills, we need many kinds of insulin. We are all different, with varying rates of metabolism. Tracking our daily raises in blood sugars with injected insulin is extremely difficult. Managing diabetes is only made more difficult by taking away the tools that best help us. Also frustrating is the knowledge that the medical communities in other countries have worked to keep insulin preparations that we, in the United States, can no longer access.

Many of the insulins removed from the U.S. market are irreplaceable tools for treating diabetes. Beef-pork insulin was injected by 300,000 people-surely enough to justify continued production. Every year Americans have many more type 2 medications and blood glucose meters, but fewer and fewer insulins.

We do support the development of new, longer-acting insulin analogs. On page 17 you can see a report on the new, 24-hour basal insulin, which is awaiting FDA approval. The irony is, we had a terrific, 24-hour "peakless" insulin removed from the market in 1993, the beef Ultralente. Many professionals and consumers alike were upset at its removal. Used with success for decades, it had no negative side effects. We won't be able to say the same about the new insulin analogs for a long time.

We offer the following information to help you cope with having your insulin of choice removed from the market.

Scott M. King

Remember, 100 percent pork insulin is still available from Novo Nordisk and Eli Lilly. Ask for it at your pharmacy. Importing the insulin you need is also possible. Learn about importation from the groups listed below.

The U.K. group advocating for insulin choice, the Insulin Dependent Diabetes Trust (IDDT), has a Web site, www.traders.co.uk/insulin trust.

The IDDT now has an American counterpart, which has opened a Web site, www.diabetes.pair.com. The IDDT-U.S. also has a help line, (888) 253-7144.

Also on the Internet is the Compassionate Use Project, with the same goals, at www.compassionateuse.com.

Cards Could Speed Pumpers Through Airport Security

In "Alarming Pumps," in the May issue, columnist Kim Boaz-Christy discusses the ever-present possibility that a pump wearer will set off the bells and whistles at airport security checkpoints.

One solution to minimize delays would be for the pump manufacturers to issue a card, preapproved by the Federal Aviation Administration (FAA), which certifies that a pump with a specific serial number is being worn by the bearer of the card, and that the pump does not represent a security problem. Such a program could eventually be extended to the manufacturers of other nonremovable medical devices.

The FAA would then advise all security personnel to honor the cards. This would not, of course, preclude any security person from taking any necessary steps to satisfy himself or herself that the pump is, in fact, the sole cause of an alarm.

I made this suggestion in a letter to [pump manufacturer] MiniMed several years ago, but never received a reply. MiniMed is in the best position to make this happen, and on behalf of their customers, they should take the lead and petition the FAA to create such a program. The cost would be minimal, and the benefits would be many.

Brian Weiss
South Pasadena, California

Linda Frederickson, a pump wearer and vice president at MiniMed, responds:

I've done a survey with all the MiniMed employees who wear a pump, to find out if they have experienced an alarm when going through airport security checks. No one reports a problem. Their keys, bracelets or belts will cause an alarm; however, once these are taken off, the chances of a pump-related alarm are very slim, just like Kim Boaz-Christy mentioned in her article. However, it is always advisable to carry a letter from one's physician when traveling, just in case.

During my recent travels to Europe, Australia, India and Asia, my pump did not set off an alarm. In fact, it's been a quite a few years since anyone has even noticed it. And, when I did have someone notice the pump, a simple explanation (saying, "diabetes pump"), has always been enough. I've never had to show my doctor's letter.

Linda Frederickson, MA, RN, CDE
Vice President, Global Medical Education

Low-GI Foods Can Still Be High in Fat

The article on the glycemic index would have been more valuable if it had pointed out that some of the foods that have a low GI are also high in fat, and therefore are not necessarily good choices, like ice cream, potato chips or oatmeal cookies.

The article should also have mentioned that there are other considerations in choosing foods besides the GI. An apple has more fiber and other nutrients than ice cream.

Regarding the article on diabetes medications ["Following the Twists and Turns of Type 2 Medications"], the idea of controlling diabetes with diet and exercise was given only one paragraph, which is too short. It is far more "do-able" than your article would lead people to believe. I have been doing this for two years, and it does not require aerobic activity "every single day." I walk two miles about five or six times a week. There have been weeks when I have been ill with a cold that I only walked three or four days, but my control remained good.

Doctors are far too prone to whip out that prescription pad because it is fast and easy. I don't think we should be encouraging this.

Rima Kittner
Berkeley, California

Editor's response: We take your comments as a request for more information on nutrition and exercise, which we will strive to fill, through our Nutrition News and Exercise Update sections.

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Categories: Blood Glucose, Blood Sugar, Diabetes, Food, Insulin, Insulin Pumps, Letters to the Editor, Novo Nordisk, Type 1 Issues, Type 2 Issues

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Jul 1, 1999

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