Memorandum

NYT publishes scathing article on high cost of treating type 1 diabetes – April 7, 2014

Executive Highlights

  • On Sunday, April 6, the New York Times published a very critical front-page piece on the costs of treating type 1 diabetes in the US. The article has been the most popular on the website (measured by most emailed) since yesterday and has garnered 140+ reader comments (most negative, by about a margin of 5 to 1 estimate; see end of our piece for select ones).
  • The article lays out a critical case against diabetes device and drug manufacturers, arguing that products of marginal value are overpriced and place an unjust burden on the US healthcare system. Patients with type 1 are portrayed as entitled consumers.

The New York Times published a very critical front-page piece yesterday on the costs of treating type 1 diabetes in the US (“Even Small Medical Advances Can Mean Big Jumps in Bills”). Highly respected author Dr. Elisabeth Rosenthal’s extensive four-part article lays out a scathing case against diabetes device and drug manufacturers, arguing that their next-gen products are often of marginal value, overpriced, and ultimately place an unjust burden on the healthcare system. Meanwhile, patients are portrayed as entitled consumers taking advantage of innovations that they don’t really need. Overall, the piece is poorly researched (see table below for nine errors we noticed), uses shortsighted arguments, and unrepresentative examples (e.g., colored pumps, talking meters) to build what seems like a truly damning case against innovation, especially to someone not acquainted with type 1 diabetes. Dr. Rosenthal selectively ignores the clinical and quality of life benefits of insulin pumps, CGMs, and analog insulin, both in the short and long-term.

Her most egregious omission, in our view, is of the long-term cost benefit of well-managed diabetes. Dr. Rosenthal does not adequately acknowledge that use of better drugs and devices now can vastly reduce profoundly expensive complications down the road – the DCCT is vaguely referred to as “a landmark study in 1992” and is only cited as key inflection point when drugs and devices got more expensive. However, compared to the treatment of type 1 diabetes one or two generations ago, we’d note that there is significantly less blindness, amputations, and kidney failure due to type 1 diabetes. While innovations in drugs and devices cannot claim all of that change, they are most certainly responsible for a portion of it. And, patients and society should certainly not want to move backwards.

We’d also point to the most recent ADA cost of diabetes figure, which estimated 2012 costs at $245 billion ($176 billion in direct costs + $69 billion in indirect costs). Importantly, 43% of direct costs came from inpatient hospital care. This was followed by prescription medications to treat diabetes complications (18%), and distantly trailed by antidiabetic agents and diabetes testing supplies (12%). Additionally, despite the introduction of new drug classes and agents between 2002 and 2012, the proportion of diabetes costs attributed to antidiabetic drugs and diabetes supplies remained steady (it was 13% in 2002 and 12% in 2007). If anything, the data implies that preventing diabetes complications (and the expenses they incur) would provide far more cost savings than reducing spending on drugs, devices, and supplies. Dr. Rosenthal’s article also does not mention the high cost of severe hypoglycemia – a critical concern in type 1 diabetes – where analog insulin, pumps, and CGM have been shown to make a difference. Recent data estimate hospital admissions for hypoglycemia at anywhere from $17,654 (Quilliam et al., AJMC 2011) to $46,039 (279-OR at ADA 2013) each. While admittedly, the cost estimates cover type 1 and type 2, we would hardly paint type 1 as a disease state where there are zero worries about complications.

Overall, this piece does a great deal of unnecessary harm in the public eye for type 1 diabetes. Even with modern tools, we’d emphasize that living with type 1 diabetes continues to be a 24/7 challenge – it demands constant mental and physical attention, self-discipline in an obesogenic food environment, and navigation of a healthcare system not set up for chronic care. Patients with type 1 diabetes walk a “tightrope” every day, balancing short-term hypoglycemia with the threat of long-term complications. Better tools may seem expensive in the short run; however, we are optimistic a more modern DCCT will bear out their advantages in the long-term. See below for more thoughts on the piece, a table summarizing the article’s errors and inconsistencies, and responses from noted members of the diabetes community.

  • The gist of the article is a valuable one in our view; it’s part of a series on why US healthcare is so costly. Clearly, healthcare delivery has to change and there should be a huge push for less spending. There is clearly waste in the US system that would be valuable to examine; still, the US does tend to face higher prices than other comparably developed countries for a range of complicated reasons and while challenging, the fact that the US is funding innovation (more $$ to R&D) is in many respects a positive. (At some point, without minimum profitability, more companies will go the way of BMS and Genentech and decide they are at a tipping point where it is not worth it to fund diabetes at all (“Let’s do more cancer.”) There is no acknowledgment in the article on what costs would be without the technology, and what short and long-term complications are being avoided as a result. For sure, the cost-effectiveness of these technologies is challenging to conclude at this point, and also raises the question whether a modern-day DCCT would be valuable. 
  • The execution of this piece was poor in our view. This is surprising given the stature of the author, Dr. Elizabeth Rosenthal, who writes for The New York Times, specializing in epidemic disease, and scientific and environmental matters. Overall, the article makes a sweeping case against recent diabetes devices and drugs, arguing that next-gen products are frequently of marginal value and ultimately place an unjust burden on the healthcare system. Patients are characterized as passive, manipulated, and entitled consumers and just looking for the next “iAnything” as SixUntilMe blogger Kerri Sparling put it (see Table 1 below). As an example Dr. Rosenthal writes, “That captive audience of Type 1 diabetics has spawned lines of high-priced gadgets and disposable accouterments…companies spend millions of dollars recruiting patients at health fairs, through physicians’ offices and with aggressive advertising — often urging them to get devices and treatments that are not necessary…”
  • Meanwhile, the advances in diabetes treatments for type 1 are portrayed by Dr. Rosenthal as inconsequential: “A steady stream of new models and updates often offer dubious improvement: colored pumps; talking, bilingual meters; sensors reporting minute-by-minute sugar readouts. Ms. Hayley’s new pump will cost $7,350 (she will pay $2,500 under the terms of her insurance). But she will also need to pay her part for supplies, including $100 monitor probes that must be replaced every week, disposable tubing that she must change every three days and 10 or so test strips every day.” [As a sidenote, the last time that patients required ten test strips a day when using CGM is beyond us.]
  • Payers are funding more downstream costs, and we would suggest more education, to reduce costly items like kidney disease. However, we don’t see that happening since payers are short-term focused. We would argue that if the system invested more in prevention of complications, the overall costs that limit payers would turn around – but that requires dollars be spent on the prevention of complications today to help people tomorrow. Dr. Rosenthal doesn’t address this. While the implication is that the technology and drugs are what is driving up overall costs, we would argue that it is the treatment of complications, such as dialysis, that could use more focus and strategy.
  • This article is the seventh in a NYT series on US Healthcare called “Paying Till it Hurts.” Other articles in the series have focused on Colonoscopy, Pregnancy, Joint Replacement, Prescriptions, ER Visits, and Dermatology. A clear pattern emerges just from reading the articles’ headlines alone – e.g., “Colonoscopies Explain Why U.S. Leads the World in Health Expenditures”; “American Way of Birth, Costliest in the World”; and “In Need of a New Hip, but Priced Out of the U.S.” Why the author did not focus on type 2 remains a mystery; those costs are escalating faster and suffer many similar misunderstandings.
  • Overall, the article dismisses the realities of bringing drugs and devices to market, barriers that have risen substantially in the US in recent years. Medtronic in particular is singled out in the section on “Planned Obsolescence,” portrayed as the pump industry’s profit-obsessed market leader that delivers incremental products of marginal benefit and forces patients to acquire them. The three major insulin manufacturers are criticized several times over the high cost of analogs relative to human insulin. The article doesn’t acknowledge the challenges of bringing new products to market, particularly those difficulties related to regulation and reimbursement.  
    • “The cost to develop these new insulin products has been enormous, and the cost of the insulin to the consumer in developed countries has risen to enable these and future advancements to occur,” said Dr. Todd Hobbs, Chief Medical Officer, North America, Novo Nordisk, one of two industry sources quoted in the article. This statement is especially applicable to Novo Nordisk’s insulin degludec, where the FDA’s interpretation of the data led to a CRL and the need to conduct a 7,500-patient cardiovascular outcomes trial and go through a four-year delay.  
    • “We are committed to reinvesting in research and development of new technologies to improve the lives of people with diabetes, and our current pricing structure ensures that we can bring new products to market,” said Ms. Amanda Sheldon, Director of Digital Marketing and Communications, Medtronic Diabetes, the other industry source quoted in the article. We felt this statement was balanced and fair – diabetes devices are expensive to make and the profit margins are not particularly high, especially once patient support services and quality control are bundled in. Higher pricing enables development of next-gen products, which will ultimately drop in price over time once manufacturing reaches scale.
  • The piece quotes just one key opinion leader, Dr. John Pickup, who comes across as largely supportive of the article’s central thesis. Still, Dr. Pickup has been a pioneer of insulin pump therapy and CGM, and we believe his take is likely not quite as extreme as Ms. Rosenthal portrays it. Many other sources are quoted in the article, though we are not familiar with any of the names.
  • “The high price of new treatments for diabetes, rheumatoid arthritis, colitis and other chronic diseases contribute mightily to the United States’ $2.7 trillion annual health care bill.” The headline nature of this statement is not quite backed up by the numbers – as noted above, the direct costs of diabetes were $176 billion in 2012, of which prescription medications to treat diabetes complications were 18% and antidiabetic agents and diabetes testing supplies were 12%. That 12% – the focus of Dr. Rosenthal’s argument – accounts for just $21 billion, or less than 1% of annual US healthcare costs. That's hardly a sizable contribution, particularly given the benefits. We are in the midst of some research on the 18% due to diabetes complications – we are thinking this is dialysis oriented but will be back on this point.  
  • The large discrepancy in pricing between the US and other countries is one of the article’s major themes. Though several factors are in play, this is in large part a reflection of fundamental healthcare system differences – Economist Robert Shapiro puts it cogently in the article, “Drugs and equipment makers operate in a global market, and our costs [i.e., US] are higher because every other country applies price controls, and we don’t.” To be sure, the US healthcare system pays more for drugs/devices than other countries (resulting in US patients also tending to pay more) and the author is correct that the US has disproportionately funded innovation more than other countries. However, the author unfairly uses a general debate about healthcare to blame companies and patients with diabetes for high costs. Certainly, a single-payer healthcare system is in a better position to negotiate with companies and to manage patients with diabetes – that unfortunately is a far cry from the current fragmented US system.  
  • As BMS’ and Genentech’s recent exits from diabetes imply, we may not see the traditional players staying in the market, which risks less innovation. We doubt patients can do as well and avoid long-term complications without access to next-gen monitors, insulins, and other therapies that have already been developed; we were surprised to hear the tone in the article that they didn’t matter and that patients would do just as well without them. It will be key, of course, to see how patients respond if governments and payers take this bet; we hope they realize on the drug side that without innovation, such advances will never be generic (since they will never be developed or approved).   
  • We’d note that patients with type 1 diabetes are living longer today than ever before – data from the Pittsburgh Epidemiology of Diabetes Complications Study (Miller et al., Diabetes Care 2012) suggests a 15-year longer life expectancy for type 1s diagnosed from 1965-1980 vs. those diagnosed from 1950-1964. More updated data (2008-2010) from EASD 2013 concluded, “There has been a marked improvement in [life expectancy] for men and women with T1DM compared with earlier reports. These improvements should now be reflected in life insurance and other relevant policies for those with T1DM.” As we noted above, better drugs and devices are not responsible for all of this improvement, but they have certainly made an important contribution.

Table 1 Perceived Article Errors and Inconsistencies

Article Statement

Close Concerns’ Response

1. “[Devices and treatments] may be better in some abstract sense, but the clinical relevance is minor.”

Lower rates of severe hypoglycemia with analog insulins (e.g., the HypoAna trial) and pump/CGM products (e.g., MiniMed 530G) are hardly “minor.” That’s aside from the tremendous quality of life improvements that such technologies afford.

2. “People don’t need a meter that talks to them,” he added. “There’s an incredible waste of money.”

Diabetic retinopathy is a leading cause of blindness in American adults – it’s hard to argue against a talking meter for these patients. We have never heard of other patients without eye problems wanting or using a talking meter.

3. “Most of the increase is attributable to type 2 diabetes patients, whom manufacturers are encouraging to try insulin treatment and glucose monitoring, even though that is rarely medically required.”

“Rarely” is a bit of an overstatement –according to the latest CDC Fact Sheet, 26% of all patients with diabetes are on insulin. Glucose monitoring is certainly medically required in these individuals, given the dangers of taking insulin.

4. “When Ms. Hayley pricks her finger, it is with a customized lancet to go with a customized test strip that fits into a customized meter, which transmits the result wirelessly to her compatible insulin pump”

 

This largely reflects the FDA’s approach to devices, which approves them as “systems.” Quality control, customer support, and adverse event reporting would also be extremely challenging with a non-system approach.

5. “The insulins are tweaked for minor benefits that may help a small number of patients with difficult-to-control diabetes.”

 

Given their advantages on hypoglycemia alone, analog insulins benefit far more than a “small number of patients with difficult-to-control diabetes.”

6. “Since pumps are complicated to operate, young children cannot use them.”

Per their labeling, insulin pumps are approved for the management of diabetes in people requiring insulin. If they were too complicated for young patients, the FDA would restrict their labeling accordingly. Today, insulin pumps are often encouraged at diagnosis.

In the dQ&A panel, the youngest patient on a pump is three years old, and there are 30 pumpers under 10 years old (contact Richard.wood@d-qa.com for more information).

7. “The pumps are designed to work with yet another new device called a continuous glucose monitor — bought separately — that could be lifesaving for some patients with unstable diabetes, because it sounds an alarm and suspends insulin flow if it detects that blood sugar has dropped dangerously low, which can happen during sleep. This device has two parts: a disposable probe, which is attached to the body and measures the glucose level in the skin, and a transmitter that attaches to the probe to calculate the results and send to the pump.”

Erroneously assumes that all CGMs send data to an insulin pump and function like the MiniMed 530G, which is not that case (e.g., Dexcom’s G4 Platinum, Abbott’ Navigator outside the US)

The JDRF CGM trial showed that CGMs are useful even for patients in good control: “The weight of evidence suggests that CGM is beneficial for individuals with type 1 diabetes who have already achieved excellent control with A1c <7.0%.”

8. “David Kliff, a financial analyst who is editor of Diabetic Investor, an independent newsletter on the industry, points out: “Diabetes is not just a disease state; it’s a huge business, too.”

By placing this quote in a section of the piece that focuses on type 1 diabetes, Dr. Rosenthal gives the impression that type 1 diabetes is a “huge business.” However, the relatively low number of people with type 1 diabetes in the US limits the market’s size compared to other conditions, particularly type 2.

9. “His daughter could switch to the new type of meter, which cannot communicate with her pump, which would mean her current meter would sit uselessly on her waist.”

We certainly would prefer for his daughter to be able to get the type of meter she prefers. However, changing meter type would not mean the new meter had to “sit uselessly.” It could still be used to monitor her blood glucose levels and alert her to highs and lows.

 

SELECT Responses from the Diabetes Community

  • Dick Allen (Chair of the International Board, JDRF, New York, NY): “The recent NYT diabetes article was very disappointing and made me angry. It reflects a complete misunderstanding of the value of the many type 1 diabetes 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 type 1 diabetes community as accouterments that could easily be foregone. No, these are advances that significantly reduce the daily burden on people with type 1 diabetes; advances that alleviate some of the anxiety and fear that parents experience when their child with type 1 diabetes wants to spend the night with a friend; advances that have yielded demonstrable improvements in clinical 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 be, instead, to encourage even more innovation and advocacy 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, San Diego, CA): “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 (Founder, ASweetLife.org): “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 that the very tools that keep us alive are frivolous.”

  • Dr. Roy Beck (Jaeb Center for Health Research, Tampa, FL): “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 Block (Patient; Stanford University Department of Pediatric Endocrinology, Stanford, CA): “As an individual with type 1 diabetes and an nurse practioner 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, 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. Steven Edelman (University of California at San Diego, San Diego, CA): “The article by 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 NIDDK Division of Diabetes, Endocrinology, and Metabolic Diseases, Bethesda, MD): “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 (Diabetes Technology Consultants, Wyckoff, NJ): “I believe that we - the community of healthcare workers, the voluntary health organization, the NIH, and industry - are making tremendous strides in the treatment of diabetes. We are already hampered by bureaucratic regulators and short-sighted payers, and now we 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, San Diego, CA): “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. Our Dexcom Continuous Glucose Monitoring technology not only improves day-to-day management of diabetes, but provides alarms and information that many people with diabetes credit with saving their lives. We receive letters every day from patients that have avoided potentially catastrophic events by using our technology – these events would have cost the healthcare system much more than the expenses related to CGM.

    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.”

  • 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 (Newcastle University, Newcastle upon Tyne, UK): “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 it is in most other medical fields), and it behooves 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 healthcare 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 Kaufman (Chief Medical Officer and Vice President for Global, Medical, Clinical and Health Affairs, Medtronic Diabetes, Northridge, CA): “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 (Director, University of Virginia Center for Diabetes Technology, Charlottesville, VA): “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. Healthcare was quite inexpensive in the middle ages but life expectancy at birth was in the 30s.”

  • Davida Kruger (Certified Nurse Practitioner, Henry Ford Health System, Detroit, MI): “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 (DCCT). 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 complications. I saw at least ten patients today who wear an insulin pump, continuous glucose monitoring (CGM) device, or both. The use of CGM allows both the patient and the provider to adjust insulin without compromising added hypoglycemia and to understand patterns of blood glucose that need correcting. Every day I am grateful for the technology that allows my patients the opportunity to have a better, longer, and 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.”
  • Charles Macfarlane (CEO, American Association of Diabetes Educators): “While the article, "Even Small Medical Advances Can Mean Big Jumps in Bills," on April 5, 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 (Advocate): “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.”
  • Chad Rogers (Founder and CEO, TypeZero): “We would like to point out an important omission in the recent New York Times article by Dr. Elisabeth Rosenthal on Sunday, April 5.  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, Gainesville, FL): “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, Los Altos, CA; 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, New York, NY): “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): “The clinical evidence is clear. 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 NYT 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, Philadelphia, PA): “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."

NYT 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.”

 

--by Adam Brown, Hannah Deming, and Kelly Close