Diabetes In the News

The New York Times recently ran an articleThis image is associated with an external link. regarding the cost of diabetes, causing an outbreak of conversation in the diabetes community. Diabetes Forecast magazine editorial director, Kelly Rawlings, weighs in with her own thoughts:

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I like it when an article about diabetes shows up on the front page of a major newspaper.

Diabetes and the nearly 26 million people living with it deserve respect and understanding—and more media coverage. When The New York Times runs an article called “Even Small Medical Advances Can Mean Big Jumps in BillsThis image is associated with an external link. and slugs it “Type 1 Diabetes,” it’s a must-read for me.

I hope you’ll read the article, too. The story gets some parts of diabetes so very right—and some parts so very wrong.

Elisabeth Rosenthal writes about the very real personal expenses related to taking care of diabetes, and the constant vigilance it requires. She asks about type 1 diabetes: Do pharmaceutical and device companies make too much profit from diabetes products that people need? Why do we pay so much more in the U.S. than people In other countries pay for medications and supplies? Good questions!

I can’t forgo insulin, insulin delivery devices and the blood glucose test strips that I need to treat my type 1 diabetes. The costs are substantial (although at least I no longer can be denied health insurance coverage because of my pre-existing condition). I depend on the drugs and medical devices that the FDA clears, the companies make, my doctor recommends for my therapy and my health insurance covers.

I would like to trust that companies make a fair profit, one that allows them to maintain quality control, customer service and research and development budgets for innovation. I welcome more transparency from those for-profit businesses. Of course, our fragmented health care and free market systems also contribute to how prices are set. And, as the article states, the U.S. bears the brunt of the research and development costs for new drugs and devices—and pays more for them when they reach the market. Do test strips, for example, really need to cost more than $1 each?

The article implies that ongoing daily care for chronic diseases may be more expensive than hospital or emergency care. We know, however, that managing blood glucose levels on a daily basis greatly reduces the risk of long-term damage to our hearts, kidneys, eyes and limbs—and the very expensive hospital care such complications require. I care about reining in costs and wasteful or ineffective spending, but I think we also need to weight our cost-benefit formulas to favor quality of life.

My employer, the American Diabetes Association, estimated the 2012 costs of diabetes at $245 billion—$176 billion are direct costs and $69 billion are indirect costs. Forty-three percent of the direct costs are from inpatient hospital care—for severe and life-threatening blood glucose emergencies and for the treatment of diabetes-related complications such as heart and kidney damage. Such damage is the result of years of high blood glucose levels, long-time diabetes and other health problems, plus some factors science hasn’t yet untangled. Just 12 percent of total direct costs are from the blood-glucose-lowering medications and diabetes testing supplies we use every day.

The article implies that newer insulins and improvements in insulin delivery and blood glucose monitoring devices aren’t necessary. Yet the Association’s Standards of Medical Care in Diabetes guidelines (based on proven medical evidence) recommend the use of “new” (and yes, more expensive) insulin analogs for people with type 1 to reduce the risk of hypoglycemia. The guidelines also suggest using insulin pumps or multiple daily injections and blood glucose monitoring, based on what’s best for each person.

The article implies that insulin is not “medically necessary” for people with type 2 diabetes. That’s flat-out wrong—and dangerous. The 1 in 4 peopleThis image is associated with an external link. with diabetes who use insulin—most of them have type 2 diabetes—would be very sick indeed without various formulations of that wonder drug.

Insulin pumps help us dose and deliver insulin safely, precisely and consistently. Blood glucose meters and continuous glucose monitors help us know whether blood glucose levels are in the narrow safe zone and provide information that we can use to adjust medications, food choices and physical activity. So many variables. So many daily adjustments. Better, smarter tools help.

The insulin, pump and meter I use today are vastly improved compared to the old-school insulin, syringes and color-changing Clinitest urine glucose tablets my parents and I used to treat my diabetes circa 1973. My blood glucose is at safer, healthier levels. Credit is due to my hard work, to great health care, to research and advocacy efforts supported by volunteer organizations such as the American Diabetes Association and to knowing how to use these improved tools.

Rosenthal unfairly disses manufacturers for making only small, unimportant updates to products and for aggressively marketing the medical devices that the article dismisses as “gadgets.” My insulin pump is a life-sustaining medical device, not just a gadget. Diabetes is the true enemy. Not corporations or the human desire to protect and improve health, to innovate, and to change lives for the better.

I’m an insulin-vial-half-full type of person, however. The New York Times article—despite its flaws—has inspired some important conversations, like this open letter from my friends at DiaTribeThis image is associated with an external link.. People are talking about how we can work together to ensure that all affected by diabetes can afford to take care of it on an everyday basis at home, work, school, and play—where we’d much rather be instead of in the hospital.

I hope you’ll add to the conversation.

Kelly Rawlings has lived with type 1 diabetes for 41 years. She’s the editorial director of Diabetes Forecast magazine. Her insulin pump is blue; her blood glucose meter beeps but doesn’t talk.

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10 Responses to Diabetes In the News

  1. John Shaw says:

    Why do we (in the USA) have to cover the costs that diabetes pharmo’s lose to other foreign countries? Test strips at over $1.00 a strip and total annual costs for the average consumer to treat diabetes (around $12,000/year) is obscene when one considers that most other countries get their diabetes supplies for next to nothing. I am a type 1 diabetic struggling with a family of four to pay the bills (forget about college for my kids). I would like to know why more than 15% of my salary is going to subsidize these other countries who negotiate with our pharmo’s for lower rates. It should be the other way around.

    Please let me know why.

  2. I live with type 1 diabetes with large doses of multiple insulins multiple times per day
    I have to also take meds for nerve damage to legs stomack and bladder and amost recently renal
    Disease. Plus syringes test strips pen needles . I pay $350 per month for insurace.
    It costs me $700 per month for all of my scrpits i work to stay alive thank god my h
    usband makes a decent living. Even with his insurance as secondary this is my personal cost.
    Most recent i was hospitalized for bdominal wich resulted in surgery and a hospital induced dka
    With 2 insurances i now owe $26000 . Someone could buy a car for that and i dont have money laying around to pay for this. So this desease with ruin us financally and eventually kill me. No cheap and def
    Not for the faint of heart. People with diabetes are stringer than most

  3. Henry Bryan says:

    I did read the entire NY Times article. I did not like the inference that people with T2 diabetes can manage it with diet and exercise. I was diagnosed in 1972 and my career was a surveyor including becoming registered in 6 states. A lot of my work was collecting information for interstate highways, railroads, dams, power line routes and then construction staking. It required a lot of walking, hard work and cutting of brush, etc working 10 hour days and longer plus drive times that lasted 1 hour + each way. Yet in spite of all this it came to the point that I needed insulin. Even though a T2, my endo put a CGM on me in 1999 and we learned so much about my BG’s, especially highs we were missing plus I had problems with lows too in the 30’s and 40’s that he was able to justify a pump for me and what a difference that has made. Highest A1C in 5 or 6 years has been 6.8 and most of time it is around 6.0.
    One of my takes from the Times article is the seemingly disproportionate cost we pay compared to Europe especially. I understand it takes a lot of money for research, development, the approval process, etc to get products to market and yet for the companies to make enough profit to stay in business and put funds back into R&D. These devices truly make our lives much easier and I for one, even though a T2 am thankful for the insulins and devices available to us today.
    Just like the remark a talking BG meter is not necessary. Apparently she does not have any eye issues for this is truly a help to those people that are seeing impaired, so what an unjust statement this is.
    I wish it was possible for everyone with either type diabetes that needs insulin could be on pumps and continuous sensors as it does make life a lot easier and diabetes much easier to control. As you say, there are a lot of people with Type 2 diabetes that is on insulin and more will go on it as they progress. Insulin also makes diabetes easier to control in the long term and I for one wish I had known and understood more about insulin long before I met my endo that explained things to me and I finally realized that insulin could help me gain better control of my diabetes.
    Whether T1 or T2 or some other type, testing is necessary to help us control our BG for without testing we have no idea of where we are at. I sometimes cringe when I hear health care professionals (including CDE’s) that testing is only necessary a couple of times a week if you are in good control. It is impossible for me to get my mind wrapped around this statement.
    I realize economic factors and insurance availability come into play as well. I was without work in my career at times and could not afford to do much about diabetes supplies and one time both my wife and I were out of work for 2 years with just small jobs here and there so I understand this aspect of the difficulty of managing diabetes also.
    Of course the other factors that influence our health care that was not mentioned in the article is the high cost of product liability insurance in our country and the layers of legal representation that companies have to have to protect themselves and their products. All one has to do is watch TV and see all the lawyer adds wanting people to call them for representation on various medical products. This also extends to the high cost of medical malpractice insurance our healthcare providers must carry to try to protect themselves as well. Another factor that enters into the high cost in our country for medical care is the additional burden for medical providers of billing insurance companies and also the bureaucratic red tape for government demands and reports as this adds a number of other people into the process as well and it all drives up costs. If a person could afford to pay cash for medical care, it would cost a lot less and I know this somewhat first hand as I must pay myself for some things and I can save quite a bit over insurance billing by paying cash.
    Another thing not covered in the article is the cost of trials of getting medications and devices to market and all the record keeping that has to be done. I am glad that medications and devices must be proven to be as safe as possible for FDA approval but something I learned a few years ago that after FDA approval is received, there are some 10 to13 other steps that packaging, information on the inserts, grammar, punctuation, etc must go through before the medication or device can be marketed. I wonder if some of those steps could be streamlined but then I remember all the lawyer advertising on TV and say no because the companies must protect themselves the best they can.
    So my question is how much does the legal system and bureaucratic requirements add to the cost of our medications; I have no idea really but I would guess at least one third (1/3) of the cost goes to these items and maybe more. So in reality the true cost of the medication and devices is less but have to be increased to cover all these hidden costs.
    Where are articles and research that explain this part of costs to the American public? People think big settlements from insurance companies don’t cost them anything as it comes from companies but in reality it costs everyone a lot of money as companies have to cover the cost of insurance and insurance companies have to cover the cost of claims. Where does this cost coverage come from, we the consumer is who! But people do not really stop and think about this. I realize there are some legitimate cases for claims but not all.
    If I understand correctly, in Europe there is not nearly the legal claims process and awards that can be made like here in the US and that together with negotiated lower costs gives the Europeans much lower medication and device costs and also not nearly as many people according to the Times articles are on pumps either.
    Thank you for allowing me to comment on the article

  4. Natalie says:

    I am a lifelong diabetic, 38 years in August and I also have suffered 2 heart attacks due to diabetes. Was I bad diabetic? No, not at all. As a child, my mother controlled me so well that I was rarely sick. My A1C was never above 7 and you didn’t know I had diabetes unless I told them, which I did. I never hid my disease because I wanted people to understand it. To understand the terrors of living with it. To understand how hard it was to manage high and low blood sugars as a child and then teenager.
    However, in 1991, at the age of 18, I lost ALL health coverage. I didn’t go to college after high school for many reasons, a lot of them having to do with my mental health and the torment I received in HS. I couldn’t face going to college to be tortured for four more years, even if meant keeping health coverage. I didn’t understand the need for that health coverage…
    From age 18 until I was 31 years old I had no insurance coverage. I had to buy my insulin and syringes, over the counter, from a neighboring state where it was completely legal to do so. I guessed on my insulin doses for a long time. I didn’t get my A1C checked and once in a while I had a little extra to get glucose strips. I applied for government help every year and was always denied. I was told to find a job that offered insurance by government assistance programs. There were no jobs for me though. I had a HS diploma. I didn’t go to college and only had the skills of a fast food worker. I couldn’t get a job that offered insurance. Many jobs were denied to me because of my diabetes. Back then it was perfectly legal for the companies to deny my employment because of my insurance. I found jobs in small companies though but the insurance policies offered by those jobs didn’t cover pre-existing conditions and they didn’t have too!
    At age 31 I found a job that had over 500 employees and by then the laws had changed. A company with over 500 employees couldn’t deny coverage for pre-existing conditions. For the first time in OVER a decade I had an A1C taken. It was 13.1, my cholesterol was over 300. My triglycerides were 800. I nearly fainted. All those years of guessing at my diabetes control had taken it’s toll.
    I managed to get my A1C down to 7.6 in about 6 months and I become pregnant unexpectedly. I had been told I couldn’t get pregnant that years of bad blood sugars had damaged my reproductive organs. However, my husband and I were surprised to hear the news and we went ahead with the pregnancy.
    I was lucky. I gave birth to a healthy little girl, although she was 5 weeks early. She is 9 now and has no signs of diabetes, thankfully, and she is still healthy!
    Two years ago however, I had my first heart attack. The years of not really monitoring myself had taken their toll. The high cholesterol, high triglycerides and high blood pressure caused severe blockages- hardening of the arteries.
    I was 38 years old. I had been in semi control of my diabetes but due to having an HMO for a few years ago, I wasn’t eligible for an insulin pump or CGM. I was managing on 7-10 injections a day and 7x a day glucose testing, which was all the HMO would allow. I switched to a PPO after 4 years of having an internal medicine doctor monitor my diabetes who kept telling me I didn’t need an endocrinologist.
    The first thing the endocrinologist did was to put me on a pump!
    Last spring, my insurance finally approved a CGM after struggling with A1C’s in the 7.5-8.4 range. While those aren’t terrible, they aren’t good for a Type 1 with heart disease.
    Now I am in debt. Extreme debt. I owe doctors, hospitals, medical supply stores and the pump/CGM manufacturer TENS OF THOUSANDS of dollars.
    I lost my home and had to move in with family because it was either pay my mortgage or pay my diabetes care. I am on 13 different medications. I spend over $200 a week on insurance premiums and I am responsible for 15% of ALL my costs, including prescriptions. I also have a $2500 deductible.
    Diabetes is expensive.
    I feel angry over the costs I incur to simply live. Do I think my strips should cost over a $1.00 a testing strip? Is it really necessary for ONE CGM sensor to cost $100, when you change them out every 6 days? Even with insurance I am paying close to $150 a month for my supply of insulin.
    Did I mention that my husband is also an insulin dependent Type 2 diabetic? There is no way for him to be without insulin. He is one of the Type 2’s that needs insulin. He tried the pills, he lost weight, he always ate healthy, his body just doesn’t utilize his own insulin well. His mother, father and sister all have Type 2 diabetes as well. He is also on an insulin pump because shots did not regulate him at all.
    So yes, we have 2 diabetics in our family, on insulin pumps. The cost to keep up alive is BRUTAL. No, it’s not fair. It’s not fun. I go to work every day so I can have insurance and pay to be alive. There is very little financial help for people like us, we have insurance, we have jobs but most of our income pays to keep us alive.
    My daughter is only 9 years old now. She needs me. She needs her mother to be as healthy as I can be to take care of her. I will pay for the things I need because she needs me.
    However, in ten more years, she will be in college and I will be so exhausted from managing diabetes and the COSTS that I probably will no longer do what I do now. I won’t be able to too. Physically or mentally.
    I believe the costs for diabetics are outrageous. Yes, of course the technology is terrific. Of course knowing when my sugar is on the rise is wonderful. But I don’t think the NOVOLOG insulin does any better for me than the good old fashioned purified pork N and R, which I took as a youth. I have had more issues with control since the new improved insulin’s came out then I ever did on purified pork… but perhaps that is also just what diabetes does. It eats away at you and causes you to grow old well before you should even have to worry about bad health.

  5. Kelly Close says:

    The insurance companies and large employers in the US have negotiated prices down incredibly, especially systems like Kaiser that have v little choice on brands. The ACA should mean that no one has to buy strips at retail; they of course should be less costly however because now insurance companies also limit the number of strips folks can use more and more – adding huge insult to injury. The companies do not report the average strip prices bit I bet it is about 12 to 15 cents in many contracts – it is certainly not $1 on average but it is true that for years, those paying retail and Meducare had the highest prices. Medicare prices deserved to come down somewhat, but patients are at the losing end of that battle. Companies do invest in workers, manufacturing, R & D, customer service, and lots of other areas. The profitability of the BG business has been sinking for years and I am worried they will become like BMS “You know, let’s forget diabetes. This is way too much of a hassle. Let’s drop it and do more cancer.”

    We also wish that insurance companies and employers would invest more in prevention of complications. Right now, they are being pretty quiet. They could save SO much downstream; the investment will take some time.

    And in turn, profitability of insurance companies has fallen – further! – in part since they are paying for more preventable complications than ever. Because of that, they are charging patients more virtually across the board. The increased funds patients pay is not so simple as just going to the company, even if the patient is uninsured. There are lots of complicated factors and more transparency across the board is certainly positive. We do thank Dr Rosenthal for promoting this, even though we don’t fully agree on the positioning. Could ADA do a Q & A with her through you, Kelly? The danger is, of course, that it will be years before she writes again about type 1 diabetes.

    Thank you for making us all see more clearly through your v thoughtful and smart article Kelly.

  6. Mary Collins says:

    Yes, the advances are far better than what we had thirty odd yrs ago when I came down with T1, but. I’ve Always preferred research went to Curing this disease than new improved ways to manage it. Government and private research needs more support because I guarantee you, pharmaceutical for-profits do not want a cure for either type of diabetes or numerous other potentially cureable diseases. There’s a reason their profit margin is so large. Keeping the expensive designer insulins under an extended patent thanks to Congress just one. The cost of test strips is obscene. The only way I survived until Obamacare was because I could buy affordable insulin through Canadian pharmacies online…until our Congress shut that door. Fortunately, the ACA was in effect and I could but health ins.
    I’m not bitter, I’m angry. I’m trying to stay alive.

  7. Amy Martin says:

    My husband has been living with Type 1 diabetes for about 15 years now. Our employer had gotten rid of all of the health insurances and went with just one company. Prices went up from what we were paying and we were barely making it before! I agree, it is crazy how much strips are. Just the other day I had to pick up 50 count for almost $70! Really? He is also on the pump which makes cost a whole lot more. We have to find a company that will take the insurance (we have to pay seprate for prescriptions insurance) we now have. If we don’t find a company that will accept our prescription insurance, he may well have to go back to using the syringe. Will there be any elp or an end to the outragous fees?

  8. Though not the only problem, it’s clear that cost of medicines and other treatments can be a serious burden. One of our experts gives some potentially helpful advice about controlling diabetes on a budget here: http://cdiabetes.com/control-diabetes-budget/

  9. anonymous says:

    The cost of being a healthy diabetic is very expensive! Going from syringes to an insulin pump was the greatest move for me as a Type 1 diabetic but now they have you relying on all of the supplies and not all insurance companies cover these. Wouldn’t the cost of complications of the years be a lot more for the insurance companies? Expensive procedures and surgeries could be avoided pretty easily!

  10. Pingback: Recent News Articles Diabetes H

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