An Open Letter to The New York Times: Treating Modern-Day Diabetes with Modern-Day Therapies and Technologies

Regarding: “Even Small Medical Advances Can Mean Big Jumps in Bills” (April 6, 2014)

Twitter summary: dT's open letter to the @NYTimes on the importance of diabetes innovation - it helps patients prevent hypo, complications, costs + live a healthy life!

To the editors of the New York Times -

Here at diaTribe, we commend the New York Times for tackling the important issue of rising US healthcare costs in the ambitious series “Paying Till It Hurts.” There is certainly wasteful spending in the current system, and we continue to be concerned about affordable access to care for patients with diabetes. Ultimately, we were surprised and disappointed by the article “Even Small Medical Advances Can Mean Big Jumps in Bills” for its critical perspective of the rising cost of diabetes technologies. In the piece, author Dr. Rosenthal argues that diabetes technologies (i.e., insulin pumps and glucose meters) and therapies (i.e., novel insulins) are overpriced, offer little value, and place an unjust burden on the US healthcare system. As patients with type 1 diabetes, advocates, and close followers of the diabetes arena, we disagree – these innovative diabetes products are lifesaving tools for patients, prevent instances of dangerously low blood sugar (hypoglycemia), prevent significant complications, improve quality of life, and may actually reduce costs in the long-term.

Your article gives the impression that high spending on diabetes devices and drugs is the culprit behind rising US healthcare costs. Yet, the most recent data on the cost of diabetes (American Diabetes Association, Diabetes Care 2013) do not support this. In 2012, diabetes medicines and supplies accounted for approximately 12% of total diabetes costs, compared to 43% stemming from inpatient hospital care and 18% from prescription medications for diabetes complications. This breakdown of costs suggests that diabetes complications and hospitalizations are the optimal target for cutting costs, rather than the drugs, devices, and supplies used for daily management.

While the article touches upon the danger of low blood sugars, it does not capture the toll that severe hypoglycemia takes. National US population-level data suggest that hypoglycemia in type 1 diabetes was associated with 20,839 hospitalizations and 284 deaths in 2009, at a total cost of about $1 billion. The very drugs and devices criticized in the article – analog insulin, pumps, and continuous glucose monitoring (CGM) – are some of the best tools to avoid severe hypoglycemia. Rates of hypoglycemia have declined markedly since the landmark Diabetes Control and Complications Trial in 1992, as new therapies and technologies have become available in the US. Future innovations like better insulins and automated insulin delivery will continue to prompt progress. The process of developing these tools requires incremental advances and continuous innovation. Discouraging these advancements would be a disservice to patients and the healthcare system as a whole.

Dr. Rosenthal’s article also portrays patients with type 1 diabetes as passive and entitled consumers, easily manipulated by companies into buying the next “iAnything” (as diaTribe contributor and blogger Kerri Sparling put it). This couldn’t be further from the truth – patients need better tools to manage their diabetes and to help them live healthier and happier lives. One look at the comments section of the article demonstrates how much of a difference these devices have made in the day-to-day lives of patients. Phrases like “life-saving machines,” “avoid ER Visits,” and “dramatically improved my quality of life” immediately jump out. Type 1 diabetes is 24/7 work, demanding constant mental and physical attention, self-discipline for proper management, and navigation of a healthcare system not set up for chronic care. Each and every day is akin to walking a tightrope: a balance between hypoglycemia and high blood sugar, which increases the threat of long-term complications such as kidney failure and blindness. The tools criticized in this piece are safety nets that enable patients to walk the tightrope more confidently. For example, the piece points to talking meters as an “an incredible waste of money.” However, diabetic retinopathy is a leading cause of blindness in American adults and it’s hard to argue against a talking meter for such patients. No one at diaTribe has ever heard of patients without eye problems wanting or using a talking meter!

Like Dr. Rosenthal and the NYT editors, we are very concerned about patients not getting necessary treatments due to high prices, and support the need to reduce US healthcare costs by eliminating waste from the system. But we also must be strategic about the plan of attack – there is a major long-term price to pay for choosing the wrong target. We want to urge a constructive conversation where affordability and innovation are not mutually exclusive. Most importantly, patients need better upfront and ongoing education – smarter and more empowered patients will be more likely to use new products effectively, and prevent the complications that are the key drivers of rising costs. If we want to attack the costs of treating diabetes, the solution is to invest the time and dollars today in patients to prevent complications in the future.

We encourage the NYT editors to continue engaging with the diabetes community to learn more about the challenges of daily management, the benefits of new devices and drugs, and the realities of diabetes complications. Together, we can become better advocates for patients, providers, and an equitable healthcare system.

Responses from the diabetes community:

Dick Allen (Chairman of the Board, JDRF International; Board of Directors, Tandem Diabetes Care): "The recent NY Times diabetes article was very disappointing and made me angry. It reflects a complete misunderstanding of the value of the many T1D technology advances we have seen over the past several years. These advances aren't trivial, and they certainly aren't seen by people in the T1 community as accouterments that could easily be foregone. No, these are advances that significantly reduce the daily burden on people with T1D, advances that alleviate some of the anxiety and fear that parents experience when their child with T1D wants to spend the night with a friend, advances that have yielded demonstrable improvements in clinic results and an attendant reduction in the risks of complications, and - finally - advances that save our health care system money in the long-term. There is no question that these innovations cost money in the short-run, but, contrary to the implications of the article, the response shouldn't be to deny them to our loved ones; it should, instead, be to encourage even more innovation and to advocate for health care policies that will make them accessible to everyone who needs them."
Rick Altinger (CEO, Glooko): “I was disappointed by NYT diabetes article, as it did not cover the short and long term ROI achieved by leveraging technology to improve diabetes management. Leveraging diabetes technology, to create actionable information, particularly around hypoglycemia, will lead to dramatic reductions in hospitalization costs and significantly improve the health of people with diabetes. The first cars were essentially four wheels and an engine, and it drove, but it was inefficient and dangerous. It is the dozens of sensors and pumps with their data presented on a car dashboard that let us now drive efficiently and safely. The same goes with devices in diabetes - technology, though expensive, can create actionable information, particularly around hypoglycemia, that results in dramatic reductions in hospitalization costs and significantly improve the health of people with diabetes. At over $40k per severe hypo event, there is significant opportunity for technology and data management to deliver an strong ROI.”

Christopher Angell (Founder, Glucolift): “As someone who generally agrees that there is a lot of waste in the diabetes world, coupled with a lot of inadequacies in terms of genuine needs not getting met, I thought this article missed a great opportunity. I hate to say that people who don't live directly (either as a patient or caregiver/immediate family member) with diabetes aren't qualified to write about it, but this article would certainly support that argument. One need only read the correction at the bottom to get a sense of her level of familiarity with diabetes: “Correction: April 5, 2014 An earlier version of this article incorrectly described glucagon, a drug that families of diabetic children are advised to keep on hand. It is a hormone injection, not an injection of concentrated sugar water.” At turns it seemed to blame the costs on patients wanting new devices that offered few, if any, tangible treatment benefits (all of you who get new $10,000 pumps every year because they come in a different color please raise your hand); device/drug companies who only offer us the newest/most expensive options that are patent protected so they can continue to develop newer/more expensive options that, again, offer little tangible benefit; or other developed countries, who are better negotiators than we are and force companies to make up in the US the margins they lose in Europe. Somehow, despite the fact that all of these new expensive advances don't actually improve care, we no longer have to worry about kidney disease, blindness, amputations, or heart attacks. A neat trick, no? If you're going to make claims like that, you need real evidence, not a quote from a single HCP. The only actual clinical study cited was the DCCT, which is almost 20 years old and does not include data on any of the devices or insulins that occupy the bulk of the article.”
Jessica Apple (A Sweet Life): "A few years ago, in a call for an improved insulin pump that would pave the way for an artificial pancreas, JDRF publicized a terrifying statistic - 1 in 20 people with Type 1 diabetes will ultimately die of hypoglycemia. If that doesn't underscore just how important our 'gadgets' are, I don't know what does. The NYT made a grave error when they published an article suggesting the very tools that keep us alive are frivolous."
Brandon Arbiter (Tidepool): "The author points out that modern devices, specifically insulin pumps and continuous glucose monitors, record data every few minutes. But she hardly addresses the revolutionary implications of this high frequency data collection, or where we are today in realizing its potential. For the individual patient, if accessible, these data will help him live a longer, healthier, and safer life. In aggregate, these data will make up an incredible story about the nature of a disease and about the human body. They will tell us how we, as a society, can manage diabetes more effectively. None of this would be possible without the new devices with incredible new data capture features that the author summarily dismisses as propagating planned obsolescence.

It has been well demonstrated through a myriad of academic and scientific analyses and meta-analyses that these devices, despite their upfront costs, have a long-term financial benefit to the healthcare system by reducing the costs of complications from type 1 diabetes. And that's before getting to the value of the data! This was a huge missed opportunity for the New York Times to point the way forward. Instead, the article was akin to short-sighted, early evaluation of the iPhone as the author gasps over the price of a device rather than honing in on the implications of a technology platform that is on verge of changing healthcare as we know it."
Dr. Roy Beck (Jaeb Center for Health Research): Although technologic advances in diabetes may increase health care costs in the very short-term, this is a myopic view, even if true. Advances in pump and CGM technology have been shown to improve measures of glucose control, which will translate to substantially lower health care costs in the long run due to a reduction in the rate of acute and chronic diabetic complications.”
Jen M. Block (Stanford University Department of Pediatric Endocrinology): "As an individual with type 1 and an NP providing care for people with diabetes I know all too well the many challenges of daily life with this complex disease. I believe if anyone with diabetes is to achieve the best outcomes they are capable of, they need the support of new drugs, devices, and therapies. Any advancement that helps people to live well with diabetes and improve glycemic control reduces the high personal costs of poorly managed diabetes AND reduces the cost of managing potential complications to our healthcare system. To anyone who doubts the benefit and impact of diabetes innovation, I offer you a chance to walk a day in my shoes."
Jeffrey Brewer (President and CEO, JDRF): “On behalf of everyone affected by type 1 diabetes (T1D), JDRF is outraged by the recent article in the New York Time trivializing the benefit of medical advances for people with T1D. Rather than being “high priced gadgets and disposable accouterments” as the article defines them, these lifesaving advances are indeed just that — life saving for individuals with T1D. A recent study documented such advances helped add roughly 15 years of life for those diagnosed with T1D. The New York Times story suggests that some medical advances for T1D that could mean a longer life and better health for some people with T1D are not worth the cost — a premise JDRF completely rejects. JDRF supports continued innovation of new medical advances to further improve the lives of people with T1D and to ultimately cure this disease. Such step-wise advances, big and small, are how we will ultimately create a world without T1D. We need a health care policy that supports innovative research on new advances for people with T1D and one that makes these advances available to every person who needs them.”
Bennet Dunlap (Founder, StripSafely): “The story of technology is the value it brings. Computers cost more than pencils, ruled notebooks and movable type presses. The New York Times assembles the paper with computers, because they bring value. We drive safer cars for the value. People with type 1 diabetes can be more productive members of society due to the value of effective technology.”
Dr. Steve Edelman (Founder and Director, TCOYD): "The article by Dr. Elizabeth Rosenthal exemplifies the general public and professional ignorance about this disease. The tone of her article would be quite different if she or a loved one had diabetes and relied on the drugs and/or devices that she refers to in her "Big Bill" attention getting headline. The story does not deserve the attention it is getting. She obviously has no clue."
Dr. Judith Fradkin (Director of the NIDDK Division of Diabetes, Endocrinology, and Metabolic Disease): "Availability of devices like pumps and meters has enabled people to better manage their type 1 diabetes. Thanks to these devices, we were able to conduct the Diabetes Control and Complications Trial, or DCCT. Thirty years after that trial began, we’ve found that six and a half years of better glycemic control has cut rates of cardiovascular and kidney diseases in half. Aside from the huge benefits of better health, the major costs of diabetes are its complications. As DCCT results showed, money spent now on caring for people will prevent costly complications in the future. These complications can take decades to develop, so it is people who develop diabetes at a young age who have the most to gain from good control of their blood glucose and, thanks to the availability of devices like insulin pumps, are now much better able to achieve good control. Already people with type 1 diabetes are living longer and healthier lives thanks to better devices and better medications, and we can expect even better outcomes when an artificial pancreas is developed that can further improve blood glucose control and reduce hypoglycemia.”
Dr. Barry Ginsberg (President, Diabetes Technology Consultants): "I believe that we, the community of health care workers, voluntary health organization, the NIH and industry is making tremendous strides in the treatment of diabetes. We are already hampered by bureaucratic regulators and short-sighted payers and now have to deal with a national news article from someone who doesn't understand diabetes therapy. I am embarrassed for the NY Times."
Terry Gregg (CEO, Dexcom): “It is very disappointing to see an article in a major publication with so little research, or quite frankly, credibility behind it. Yet, as we have already seen and read, it has generated so much controversy and animosity for its lack of thoroughness. I think the author would probably have a different reaction if she had taken the time to actually speak to patients with diabetes. How would she respond to a parent that lost a child to “dead in bed” syndrome knowing that it did not have to happen? How would she respond to the family of someone killed in a car crash by a person with diabetes experiencing a hypoglycemic event while behind the wheel? These are the everyday experiences of the diabetes community that industry is trying to prevent with technology. This article is shameful, and once again, speaks to the ignorance of those outside the community commenting on something they know little (if anything) about.

I have been involved in the diabetes industry for over 20 years and have been central to some amazing advances in technologies offered to treat patients afflicted with type 1 diabetes. Technologies exist to enable people to live as normal a life as possible – and yes, people are entitled to live a life as normal as possible.

While I do not agree with all of the points made by this article, I do agree with one idea that has been presented. Our industry offers many solutions to treat diabetes, all of which cost the healthcare system money. The average cost to treat an individual with diabetes is more than twice that of a non-diabetic person. Indeed, innovations do cost money, but they also save money in the long run. Our collective goal should be to continue to evaluate the improvements in health outcomes and the costs required to achieve them. That is the difficult problem facing healthcare today. At Dexcom we know patients need this technology, but it needs to be delivered in a manner that justifies the cost. We look forward to the challenge."
Dr. Karin Hehenberger (Founder, LyfeBulb): "Let us come together and unite with the companies to show insurers, government and patient advocacy organizations what advances actually are needed and make sense to us – the people living with the disease."
Manny Hernandez (President, Diabetes Hands Foundation): "It is true that people with diabetes may look healthy. We may continue to live our lives and not let diabetes slow us down. But underneath it all, each of us thinks about and has to manage this disease constantly. Many of us are connected to multiple devices. Many of us prick our fingers multiple times a day and give ourselves shots. (I invite you to walk a mile in our shoes.) All of us live every minute of every day knowing that despite our best efforts to manage this chronic condition, a severe high or low blood sugar could put us in a coma, result in a car accident, or worse.

There’s a growing number of diabetes advocates fighting for increased treatment options and easier access. Unfortunately your article not only misinforms the general public about some diabetes basics and overlooks important aspects related to cost vs. quality, it fundamentally undermines our fight in its very infancy. For people living with diabetes this is a fight for our right to live long, healthy lives in spite of diabetes."
Jeff Hitchcock (Founder, Children with Diabetes): “To me, the big miss in this article is the author's failure to understand and explain the benefits of the drugs and devices discussed in the article, and why we in the type 1 community choose to use them. Any honest review of medical costs must compare the new drug or device and its impact against the previous drug or device and its impact. In the case of all we use today to manage type 1 diabetes, including glucose test strips, insulin analogs, insulin pumps, continuous sensors, and even the new type 2 drugs like GLP-1 agonists and SGLT-2 inhibitors, we are adding truly modest cost now to save enormous cost later. Viewed in a completely dispassionate financial way, this makes perfect sense – but only if all costs and outcomes are realized and included in the analysis, which this article does not do. And that is without examining the positive impact on both quality and quantity of life afforded by these new technologies. Perhaps because the outcomes for people with type 1 have become so positive – as a direct result of these innovative products – the community at large has forgotten what the outcomes used to be and have lost focus on why the tools we use are so important.”
Dr. Philip Home (Professor of Diabetes Medicine, Newcastle University): "Yes, diabetes care is expensive and is becoming more so. It is expensive because the medium- (type 2 diabetes) and long-term (type 1 diabetes) vascular complications are expensive, while living with diabetes, and in particular insulin injections, still has a significant impact on day to day living. So funders whether personal, insurance, or governments, have been prepared to pay. Where formal cost-effectiveness analysis has been applied, as in various guidelines and technology appraisals by the National Institute for Health and Clinical Excellence in the UK, nearly all medications and devices have been made available for funding to at least some sectors of the diabetes population (including for example insulin pumps). For the future the development costs of some of the newer technologies and approaches will be very high, and indeed individual therapeutic approaches in some cases such as stem-cell derived transplantation will never be cheap. ‘Willingness to pay’ is going to be a continuing issue as in most other medical fields, and it behoves commercial and academic researchers and developers, and indeed regulators, to pay attention to the cost implications of what they do when pushing out the technological frontiers to address unmet needs.

Meanwhile health-care itself can become more efficient nearly everywhere, and certainly in the US, though perhaps with less leeway in diabetes. In any case that does not simply mean rationing therapies. "
Dr. Francine R. Kaufman (Chief Medical Officer and Vice President for Global, Medical, Clinical and Health Affairs, Medtronic Diabetes): “We think it’s good to have a national conversation about the rising costs of healthcare and what can be done to ensure access to medical technology for everyone who needs it – no matter their financial situation. However, it’s unfortunate that this article seemed to miss the innovation in diabetes management that continues to significantly improve the lives of people with diabetes. There’s a strong body of clinical evidence showing that near-normal glucose control greatly reduces diabetes complications as well as strong clinical evidence supporting the use of insulin pumps and CGM to help people achieve that control. Most importantly, this means I’ve been able to see my patients live longer, healthier lives. But it also means that, with better control, they’re avoiding expensive hospital visits and costly complications, which reduces long-term costs to the healthcare system.”
Dr. Boris Kovatchev (Professor, University of Virginia; Director, UVA Center for Diabetes Technology): "According to CDC, “Since 1900, the average lifespan of persons in the United States has lengthened by greater than 30 years; 25 years of this gain are attributable to advances in public health.” Type 1 diabetes is a particularly striking example of medical technology advances, improving from terminal disease with less than a year life expectancy in the early 1900s to a chronic disease with near-normal expectations today. A number of studies have shown that continuous monitoring and insulin pumps make a difference, and ever greater advances are expected by the artificial pancreas. While the author of this article is entitled to her opinion, it is almost certain that her view is not shared by the majority people with type 1 diabetes and those around them. Health care was quite inexpensive in the middle ages but life expectancy at birth was in the 30s."
Davida Kruger (Henry Ford Health System): "I have been involved in diabetes care for more then 30 years. I had the privilege of participating in the Diabetes Control and Complications trial. What we learned in that landmark study was best practices to prevent complications related to diabetes. It was very difficult to reach treatment goals in the DCCT without the tools we now have available. Over the years, each addition to technology has allowed people with diabetes to achieve treatment goals and prevent complication. I saw at least 10 patients today who wear an insulin pump, continuous glucose montitoring (CGM), or both. The use of CGM allows both the patient and the provider to adjust insulin without compromising their lives with added hypoglycemia and understand patterns of blood glucoses that needs correcting. Every day I am grateful for the technology that allows my patients the opportunity to have a better, longer, healthier life. I am appalled that the NYT article truly never asked a real expert, looked at the data and, clearly had no idea what it is like to live with diabetes. The only positive of this article, is the opportunity for those involved in diabetes care and those with diabetes to now talk about what we know to be true about the care and management of diabetes."
Howard Look (CEO, Tidepool): “On the one hand, I'm thrilled that T1D is being talked about on the front page of the New York Times. Sadly, the article does a really poor job of telling the true story: Poor control of blood sugar over a lifetime leads to hideous and expensive complications. The cost of an insulin pump now is nothing compared to the cost of an amputation or blindness in 50 years. We need to look at both, together. These are not "gadgets" and "accouterments," these are life saving devices that deliver precise amounts of a deadly hormone. A CGM is not a luxury that simply "report[s] minute-by-minute sugar readouts," it's a life-saving tool that lets me know when my daughter is at risk of night-time hypoglycemia, which kills 1 in 20 people with T1D.

The NYT missed the mark. They had the opportunity to educate people on the challenges of balancing short-term costs with long-term costs in a messy multi-payer system. They had the opportunity to tell how these devices reduce the burden of living with a terribly burdensome disease. Instead they opted for the easy-to-tell but misleading "high-priced gadget" story. Shame on them.”
Chuck MacFarlane (CEO, AADE): "While the article, Even Small Medical Advances Can Mean Big Jumps in Bills, April 6, 2014, points to the larger issue of managing healthcare costs, we must be careful that in the process of managing those costs that we don't sacrifice quality patient care. A recent survey conducted by AADE demonstrated that Medicare's Competitive Bidding Program, which was cited in the article as a cost-saving measure, seriously diminishes access to the most accurate blood glucose meters. Inaccurate results lead to faulty treatment assumptions. Diabetes educators work every day with people who have diabetes. Every one of them would tell you that they need a variety of high quality, reliable tools in their arsenal in order effectively help their patients achieve optimal health."
David Panzirer (Trustee, Helmsley Charitable Trust) and Dana Ball (T1D Exchange): "The evidence is irrefutable that people using insulin pumps and continuous glucose monitors have better health outcomes. Randomized trials, corroborated by real-world data from the T1D Exchange registry of more than 26,000 children and adults with T1D, have demonstrated the benefits of these devices...Better health outcomes translate to fewer complications, which saves our country billions in healthcare dollars."
Dr. Anne Peters (Director, USC Clinical Diabetes Program; Professor, Keck School of Medicine of USC): “Dr. Rosenthal clearly has no clue what it means to live with type 1 diabetes. She seems to have asked no thought leaders in type 1 diabetes. Speaking with me or Joslin’s Dr. Lori Laffel, authors of the ADA/JDRF Type 1 Diabetes Sourcebook, would seem a reasonable idea. She misses the point that it technology that makes living with type 1 diabetes possible—a cure is a distant dream, technology is here. And, of course, she completely misses the reality of the risk of hypoglycemia.

Her sentence: “But as diabetics live longer, healthier lives and worries fade about dreaded complications like heart attacks, kidney failure, amputations and blindness, they have been replaced by another preoccupation: soaring treatment costs.” ...means she has never come to East LA and has no clear that patients with type 1 diabetes STILL develop these complications in the absence of good care. A patient of mine is fighting to save her vision as we speak.

If I were Dr. Rosenthal, I would have talked about the miracle of modern treatments of type 1 diabetes, but how it isn’t the technology that makes the treatment, it is the partnership between provider and healthcare professionals and how we have a terrible shortage of knowledge healthcare providers to treat type 1 diabetes. Meanwhile, there is a cardiologist on every corner. There are entire states without good diabetes care...”
Catherine Price (A Sweet Life): "In addition to its many factual errors, my biggest issue with the piece -- and a concern that is shared by many other people in the diabetes community -- is that it seemed to suggest that companies like Medtronic are burdening people with Type 1 diabetes with unnecessary devices that complicate our lives. But in reality, the insulin pumps, meters and continuous glucose monitors that the piece appears to disparage actually are crucial management tools (and actually simplify our lives). There's a reason that Haley is saving up for that pump and paying for new forms of insulin (and why many people with type 1 fight so hard with their insurance companies to get coverage for continuous glucose monitors and pumps): she needs these advancements in order succeed at the incredibly difficult task of being her own pancreas. (Otherwise, why not just go back to insulin from cows and pigs that's delivered by a hand-sharpened syringe?) Pumps, CGMs and other devices are important tools in our constant, never-ending struggle to avoid diabetic complications and live long and healthy lives. As such, these devices aren't frivolous; they're essential -- and people with diabetes need more technologies, not fewer. In order to prevent errors and misapprehensions like those in this article from happening in the future, the New York Times should take a cue from the FDA’s Patient Representative Program, and establish a patient advisory board to review major health-related articles like this from the patient perspective before they are published. Additional suggestions are in my article on A Sweet Life on how to rectify some of the problems caused by last weekend's piece."
Chad Rogers (Founder and CEO, TypeZero): "We would like to point out an important omission in the recent New York Times article by Elisabeth Rosenthal. Dr. Rosenthal’s piece misses a key fact that the process of technological innovation – medical and otherwise – is inherently evolutionary and dynamic. While we always want and should strive for more efficacy and lower costs from our technology, it is important to understand that current state-of-the-art solutions often represent a critical brick in the road to the future state-of-the-art. Future diabetes management solutions, such as the artificial pancreas, promise to deliver even further improvements in patient safety and outcomes and are inconceivable without the technological advances that have brought us this far. While measuring the value of current technology in these terms is certainly challenging, it is a key element in the continued innovation that will ultimately benefit patients and the healthcare system alike."
Dr. Desmond Schatz (Professor, University of Florida College of Medicine): “Whereas the author's intention initially was good – i.e., drawing attention to the high costs of managing diabetes – the many inaccuracies and frivolous statements markedly detract from the article. Intensive management, including insulin and glucose monitoring, are critical to ensuring ongoing health in patients with both type 1 and type 2 diabetes. Clinical trials have shown beyond any doubt that both short-term and long-term complications can be reduced by maintaining blood sugars as close to normal range. This can only be achieved in the majority of cases using analog insulins and technological advances in glucose monitoring. A backlash will further limit access. Whereas cost may be higher upfront, this pales in comparison to the treatment of macrovascular and microvascular complications, notwithstanding indirect costs and enhanced quality of life. That said, the current day-to-day cost of managing type 1 diabetes is extremely high and the majority of patients do not benefit. The question that should be addressed is how to get technological advances to all of our patients.”
Tamar Sofer-Geri (Executive Director, Carb DM; parent of a child with type 1): The article fails to appreciate how difficult it is to manage type 1 diabetes and the emotional toll it takes on patients and their caregivers. These technological and medical advancements benefit everyone with type 1 diabetes, not just a minority with “unstable diabetes.” I have yet to meet a patient with “stable diabetes.” Even the best-managed patients experience dramatic swings in their blood sugars. Any tool that can help reduce those swings is valuable and worth the investment. It will reduce long-term complications, improve quality of life, and keep patients active and contributing members of society. In addition, introducing new tools often serves to reinvigorate one's self-management, which in itself is valuable. Diabetes management is so exhausting and can easily lead to burnout. Anything that can help patients stay engaged and motivated to continue to manage their diabetes is well worth the investment. It behooves society to keep diabetes management tools affordable and accessible because the alternative and the price of not well managed diabetes is a lot costlier!”
Dr. Jane Seley (Diabetes Nurse Practitioner): “I feel compelled to respond to the misrepresentation of blood glucose meters as one size fits all, thus reinforcing the decision by many payers to provide limited choices to patients. As a diabetes nurse practitioner and certified diabetes educator for many years, I have taught thousands of patients to monitor blood glucose at home. Meter accuracy that may vary from meter to meter is essential to get the right information to guide treatment changes. Features that are designed to promote ease of use and facilitate steps such as marking results as before or after a meal are far from abstract. In reality, they catapult the task of monitoring blood glucose to an invaluable tool for both patient and provider. The example given in the article that "People don't need a meter that talks to them" would not serve visually impaired patients well who cannot read the result on the display screen. If payers continue to decide which meter to provide based on cost and not accuracy or individualized patient needs, people with diabetes will ultimately pay the price.”
Kerri Sparling (Founder, SixUntilMe.com): “Devices like an insulin pump, which can precision dose my insulin and help efficiently calculate and track insulin use throughout the day, help me fall asleep with more peace of mind. Wearing a Dexcom, which alarms when my blood sugars falls out of my pre-established comfort zone, helps me fall asleep with more peace of mind. Peace of mind, when living with a complicated chronic illness, matters. These are not devices I wear because they’re “cool” or “fun.” I don’t care what colors they come in or whether or not they resemble an iAnything – I want it to work and work well. I turn to technology to help best manage my diabetes because my pancreas stopped making insulin almost three decades ago, and these advances in treatment have improved my quality of life immeasurably in some ways (emotional health) and very measurably in others (better blood sugar control).

Where is today’s modern DCCT? Where is the study that’s looking at the influence of insulin pumps, CGM, and insulin analogs on patient outcomes? We’re talking about modern-day diabetes treatments and lining these discussions with studies involving somewhat outdated treatments. I’ve seen the benefits of pumping and CGM use on my personal diabetes management, and I can only hope that the overall patient population sees positive outcomes in their management when given access to these technologies. Progress is important. Innovation matters. And in my opinion, modern-day diabetes should be treated with modern-day technologies.
Dr. Karen Talmadge (President, Nabu Health Care Consulting; 2014 Chair Emeritus, ADA Board of Directors): "Improving glucose control in both type 1 and type 2 diabetes improves health, and reduces future health care costs. Unfortunately, even with today’s drug and device advances, the challenges of maintaining good blood glucose control are an enormous, and a daily – no, hourly – burden on patients with type 1 diabetes. Good blood glucose control in type 2 diabetes also has challenges. The disease is insidious, and often not diagnosed until a major diabetes-related complication occurs. And, because the disease is progressive, patients who can respond initially to diet and exercise alone, often need to add one or more anti-hyperglycemic medications. Many ultimately require insulin, with all its treatment complexities.

Is the reason that the rate of complications from diabetes is higher in the US compared to other countries because the drugs and devices are too expensive? Or is it because we have too many people in the United States who do not receive adequate care, at least in part through lack of insurance or through being underinsured? There is no doubt that there are serious questions about costs in the U.S. healthcare system. This article in the New York Times does not adequately increase our understanding of this issue, and may harm patients with diabetes through its mischaracterizations of the disease and its treatments."
Amy Tenderich (Founder, DiabetesMine.com): “This piece by Elizabeth Rosenthal definitely sheds light on important cost barriers and does a lot to raise awareness about the reality of life with type 1 diabetes overall, but it also just as clearly glosses over the huge quality-of-life improvements offered by many of these new tools. Minute-by-minute glucose readings offer just “dubious improvement”? I’m not saying there isn’t abuse out there in the sense of overly aggressive marketing sometimes. That happens. But it’s wrong to paint a broad picture of pumps and CGMs as “wanna-have gadgets” rather than medical necessities. What a terrible message to be broadcasting just at a critical moment when we patients are working so hard to encourage coverage of these necessities!”
Hope Warshaw (Owner, Hope Warshaw Associates): "As a long time diabetes educator I was appalled by the numerous inaccuracies particularly in this front page NY Times story written by a physician. But more so I was saddened by the portrayal – both in words and photos – of people with type 1 diabetes. This is not the portrait I observe in my work starting people on pumps and aiding their use of any and all the tools we thankfully have available today to manage this 24/7 demanding and very challenging disease. I see these people working hard to manage their disease while they also diligently try to live their very full lives. This portrayal also does not reflect the one I observe interacting with many people with type 1 diabetes engaged with the growing diabetes online community who I’ve come to know, love and greatly admire.”
Dr. Mark Yarchoan (Resident, Internal Medicine, Hospital of the University of Pennsylvania): "While the cost of treating chronic diseases like diabetes is inarguably too high, I don’t think anyone – not patients, not providers, not even the technocrats – would ever conceive of going back to an era of pig insulin and blunt needles that patients would self-sharpen. Innovation may have occurred in a series of small steps, but taken together the advancements have been astounding. And today’s little steps, such as more accurate continuous glucose monitors, or more convenient insulin pumps, may be forming the basis for a groundbreaking artificial pancreas."
Dr. Paul Zimmet (Director Emeritus, Baker IDI Heart and Diabetes Research Institute): "The NY Times article is poor journalism and a misrepresentation of the “Yin and Yang” concept of balance between the cost of new technology and against the cost benefit to society! Rather than see this as a win for industry and a loss to society and individuals on cost, we have a current Win/Win on this issue relating to type 1 diabetes. Yes, companies may benefit from their investment in research (not to deny a possible humanitarian angle). But so too do the persons with type 1 diabetes as well as the community both in better productivity and reduced health costs."

New York Times Reader Comments

These comments were selected from a group of 140+; the article has been the most popular on the website since late Sunday.

Gary C: “In regard to the “dubious improvement” of a continuous glucose monitor: one of our best diabetes doctors in Southern California (Dr. Baloga) died in his sleep of low blood sugar in 2011. Had he worn a continuous glucose monitor, which sounds an alarm for low blood sugar, he'd be alive today. Innovations like this are why we need to find ways to encourage (not disparage) medical advances.”
Amy Petrenko: “I have lived with Type 1 Diabetes for 20 years. When I was first diagnosed and used multiple daily injections, I was low everyday when my long and short acting insulin peaked at the same time around 2 pm and after exercising. My diabetes management was overwhelming my life. After being on the insulin pump with a glucose sensor, I have been able to exercise and enjoy life to the fullest and reduce low blood sugars. I thank God daily for technology that helps me keep healthy blood sugar ranges, which will allow me to keep diabetic complications at bay!”
Peggy: “We continue to live with T1D in our household. Six years ago, my daughter was diagnosed with T1D. We are thankful for all of the technological advances that enable her to live a "normal life" with all of the "high tech gadgets" that you seem to think are frivolous!!! My Grandmother died at the age of 51 from numerous complications with T1D -- there where no pumps, glucose monitors, & ketone testers then. I thank God every day that my daughter is better able to manage her T1D and look forward to knowing her Grandchildren some day.”
Amy O: “I have two daughters diagnosed with type 1 diabetes. When my youngest was diagnosed at 36 months, she couldn't even verbalize how she felt with a life-threatening low blood sugar. That “dubious improvement” of a continuous glucose monitor has saved her life many times in the seven years living with this autoimmune disease. Also saving the life of her older sister, a budding teenager dealing with rapid growth and puberty. Until there is a cure, this is all that we have. #notjustagadget”
Eileen G: “Think about what it's like to inject insulin for every bite you eat. My grandson is 13. He pokes his finger many times a day and is monitored at school. He tests when he plays hockey and sits on the bench until his blood sugar is in range. He can never forget to carry lifesaving insulin and supplies. The pump has improved his life. You do not get a day off - EVER. To improve his life you pursue the latest technology regardless of cost.”
Shon C: “I've lived with [T1D] for 17 years, [and] I live a healthy and happy life as a result of the little small device we call the insulin pump. Without the pump, [T1D] patients would not have the option to live happy healthy lives as we do now. As the article stated years ago [T1D] life expectancy was only 1 year before medical advancements. I love the pump and the added years it may potentially add to my life.”
Missie Malone: “I have no insurance. So the cheapest stuff is what I get so my control is not good. I'm in kidney failure and I can't get help. I am also unavailable to work.”
Emily Petit: “While I don't think the needs of any type 1 diabetic (myself included) should be marginalized, I do believe that pharmaceutical output is excessive. The balance between what is needed now and what is needed in the future (a cure) is difficult to achieve. As much as I appreciate the advances in technology, I want very much for more of this funding to go to earnest research for a cure rather than to advertising or particular technological attributes that might, in some contexts, be considered superfluous. However, different patients need individualized treatments, which are, as observed above, sadly irretrievable.”