The Cost of Staying Alive with Diabetes: A Response to the New York Times

Like many other people with diabetes, I had a complicated reaction to the recent story in the New York Times, “Even Small Medical Advances Can Mean Big Jumps in Bills,” by Elisabeth Rosenthal about the high costs of diabetes care in the United States. At first, I was excited: Type 1 diabetes above the fold? And with some genuinely important points and questions about the high financial burden that diabetes puts on the people who are forced to live with it? Fantastic!

But then, as I read the piece, I found myself bristling. There were so many misapprehensions about the disease, so many factual inaccuracies, so many misunderstandings, that instead of happily forwarding it to all my friends, I felt myself wishing that I could travel back in time and block its publication, lest the piece accidentally do harm to the very people that it was meant to serve.

Other people with diabetes – Manny Hernandez, Kerri Sparling, Amy Tenderich, Bennet Dunlap, Kelly Kunik, Tom Karlya have already responded very movingly, convincingly and eloquently about their reactions to the piece and why we feel it is the Times’ moral duty to run a response addressing some of our collective concerns. (If I’m missing people and pieces – as I’m sure I must be – please note them in the comments section.) My fellow diabetes advocates have also done an amazing job of identifying some of the factual issues (I’m looking at you, Kelly Close & Adam Brown) that should be corrected.

As for me, I spent Sunday writing an opinion piece to the Times about all this, which unfortunately they chose not to print (in part due to an editorial policy not to run opinion pieces in response to pieces run by the Times – note to self for the future!). I was disappointed, but in a way, I’m also grateful. For while I was deeply upset by the piece – which quickly reached the #1 most-emailed spot on the New York Times – this delay has also given me a chance to clarify what I really want to get across. And that message is this:

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.

I say this in part as a professional journalist who has written for the New York Times before. I know, firsthand, how nerve-wracking it is to write about science and health. I know what it’s like to have trouble sleeping because you are worried that you’ve made an unintentional error in your reporting, and that a mistake may have gotten into print. I know the sinking feeling that comes from receiving a critical response from a reader. I know that if I were to write about a disease which I didn’t have – say cancer, or MS – I would likely make errors, no matter how well researched or reported my piece might be. And I also know that even when I write about Type 1 diabetes – a disease I’ve lived with and reported on for the past 13 years – I’m not immune to making mistakes.

But I also know what it’s like to live with Type 1 diabetes, to constantly, endlessly be in charge of manually managing your blood sugar –– a task similar in concept (and consequence) to regulating your own heart rate. I know what it’s like to prick my finger ten times a day to measure my blood sugar, to have to guesstimate my doses of insulin (a potentially deadly medication) before every meal, and to blame myself when – as so often occurs – my guesstimation is wrong. I know how grateful I am for my insulin pump, a device that lets me sleep late on the weekends, exercise when I want to, and spares me from constant injections. And I know how hard I fought to get coverage for my first continuous glucose monitor, a device, portrayed in this piece as superfluous gadgetry, without which I am literally afraid to fall asleep. I also know that diabetes is expensive – my supplies cost me and my insurance company thousands of dollars a year. But I need these devices; I depend on them. Far from thinking there should be fewer, I wish that there were more.

So what would I have said if the Times had given this piece to me to review?

I would have said that while the piece raises important questions about the financial burdens of diabetes, it mistakenly implies that the devices we depend on each day to stay alive – our pumps, our blood glucose meters and, for those who can manage to get insurance coverage for them, our CGMs – are optional accessories being pushed upon us by greedy manufacturers.

I would have said that I, and the countless other people living with (or caring for people with) diabetes want access to more devices, not fewer, and that it is precisely because of these devices – the very ones that this article appears to disparage — that I am confident that (by working at it every hour of every day) I will be able to live a long and healthy life in spite of my disease.

I would have asked that the article better address why Catherine Haley, the woman with Type 1 diabetes whose story is featured in the piece, would bother to save up for an insulin pump – which she describes as being the most expensive thing she owns other than her house – if she didn’t see a value in the technology.

I would have questioned how a talking blood glucose meter could be dismissed as  “’an incredible waste of money’” when one of diabetes’ most common complications is blindness. (And I would have questioned the use of that particular doctor – whose quotes are uniformly off-base – as a source.)

I would have pointed out that the statement that there is “not a lot of difference” between Humulin (which must be taken 30 to 45 minutes before eating, reaches its peak activity anywhere between two to three hours after injection, and can stay active in your body for three to six hours) and Humalog (which only needs to be taken 15 minutes before eating, peak within about an hour, and sticks around for between two and four hours) is factually untrue.

I would have asked why the first paragraph of the piece claims that Ms. Haley will pay $5,000 out-of-pocket for her pump, but the infographic – which appears to be designed to imply that people with diabetes pay extra for rainbow colored lancets — lists the price as $2,500.

I would have pointed out that the idea that insulin is “rarely medically required” for people with Type 2 diabetes is misleading, given that Type 2 diabetes is a progressive disease, starting with impaired glucose tolerance and insulin resistance, that often leads to an inability of the pancreas to secrete adequate insulin – and thus eventually requires artificial insulin. And I would have told the reporter that many practitioners believe insulin should be prescribed earlier and more often for people with Type 2 diabetes, but that patients are often resistant – in large part because of social stigma, and the perception, perpetrated by articles like this, that if a person with Type 2 must take insulin, it means that they have failed.

I would have said that no insulin pump “delivers the appropriate insulin dose” in response to a blood glucose reading, as this article describes it; unfortunately, there is no pump – or other device — device that can do the work of managing your blood sugar. Instead, patients must “guesstimate” their insulin doses based on food intake and other factors multiple times every day – a constant and dangerous game. We would love it if a device existed that could take the guesswork out of diabetes, and deliver appropriate doses on its own. But this technology, known as a “closed loop” system (or “artificial pancreas”), is years away from development, let alone approval and commercialization.

I would have pointed out that meters are not worn on people’s waists, as this article claims, and that the Medtronic pump mentioned in the article does not necessarily require the use of a particular meter (which I know because I have used it). I would have pointed out that the cost-savings of Medicare’s recently implemented competitive bidding program for diabetic mail order supplies are offset by the limitations the program has placed on beneficiaries’ access to accurate and reliable meters and supplies. And I certainly would have mentioned that glucagon is not “an injection of concentrated sugar water” – an error in the original version of the article that has already required a correction by the Times – but rather a hormone that, by triggering the release of glucose by the liver in the case of severely low blood sugar, has saved countless lives.

I know these things not because I am a journalist, but because I have Type 1 diabetes myself. Frankly, I wish I didn’t know them – my life would be much simpler — but I have to. And since I have to, I want to put that knowledge to good use.

Given its immense power to influence policy and public opinion, the New York Times owes it to its readers to make sure that articles as important as this are 100% factually accurate – and not harmful to the people they are meant to help. Just as the FDA appoints patient representatives to participate in approval hearings for new drugs, the Times should institute a policy of running pieces like this by a panel of engaged patients before publishing a major article about any disease or health condition. We’ll be able to find errors that even the best reporters (and Elisabeth Rosenthal is an excellent reporter – and MD) will not.

The American public relies on the New York Times to report accurately on the health conditions that affect our daily lives. Perhaps it’s time for the New York Times – and other publications with similar influence — to rely on us.

Some other suggestions to mitigate the unintended negative consequences of this piece:

-The New York Times’ public editor, Margaret Sullivan (@sulliview, public@nytimes.com) could run a piece in response to our concerns

-The article’s author, Elisabeth Rosenthal (@nytrosenthal), could write an article or do a Q&A with someone from the diabetes community that addresses why people were upset with the piece, and elicits suggestions on how we can work together to avoid situations like this in the future.

– We in the diabetes community can write notes to the public editor (public@nytimes.com — submission guidelines here) or a letter to the editor (letters@nytimes.com — submission guidelines here).

Other suggestions? Leave them in the comments.

If you agree with this piece and/or have additional thoughts, please share them via Twitter, using #NotJustAGadget as a hashtag, and being sure to include @sulliview (the public editor of The New York Times) in your Tweets.

Other points I would have brought up had I seen the article before publication:

– Yes, the upfront costs of insulin pumps and continuous glucose meters high – but according to a 2011 study published in the American Journal of American Care, the average cost of a single hospitalization due to low blood sugar is $17,564. When you consider that people who take insulin run the risk of an insulin overdose and ER admission every time they eat, Catherine Haley’s $4,224 out-of-pocket expense doesn’t seem quite so high.

– The article states that insulin, a medicine that supposedly cost only a few dollars a day when Ms. Haley was a child, now costs more than $200 a vial, and is not available in generic form. It’s true that there are no generic insulins in the US — and believe me, people with diabetes would love it if there were. (Part of the reason that there aren’t generic insulins is that the FDA holds biopharmaceuticals like insulin to different standards than other drugs – and only issued guidanceon what those standards would look like in 2012.) But as the article itself points out, most insulin available when Ms. Haley was a child was derived from slaughtered pigs and cows. Animal-derived (pork, cow) and biosynthetic human insulins (Humulin and its counterparts) work more slowly and less consistently and predictably than today’s analogue insulins (like Humalog) and cannot be considered equivalent, as the article and its sources claim. See Scott Strumello’s excellent summary (and comments below) for details.

– The article states that before the development of insulin therapy in the 1920s (by which I assume the author also implies the discovery itself of insulin, which only occurred in 1922) Type 1 diabetics “often died within a year and were on such restrictive diets that they sometimes succumbed to starvation.” The author seems to be misunderstanding the facts of the disease: before insulin was discovered, Type 1 diabetes was a terminal disease, end stop. You could prolong life for several months by adopting an extremely carbohydrate-restricted diet – consider the amazing story of Elizabeth Hughes Gossett, one of the first people to receive insulin — but this was only a temporary fix. Also, much of the horrifying starvation caused by untreated Type 1 diabetes is due not to a restricted diet, but to the fact that the body cannot absorb energy from carbohydrate without the insulin – meaning you can eat all you want and still starve to death. (I experienced this personally – before I was diagnosed at age 22, I lost 20 pounds, while eating about 5,000 calories a day.)

– The article implies that Haley’s insulin pump (the Medtronic Revel) can only be used with a compatible meter. In reality, any meter can be used. The only benefit of using the “compatible” meter is that it will send the blood glucose value from the finger prick directly to the insulin pump. You can use any meter you want to test your blood glucose – the only difference is that you’d have to manually enter the result into your pump (a step which itself is optional).

– The article states that test strips “cost just pennies to make.” The author is correct that test strip manufacturers are extremely reluctant to release the manufacturing cost per strip. But it is naïve to assume that the real cost is pennies per strip, considering the 24/7 help lines and customer support offered by all the major test strip manufacturers, as well as the logistical and financial cost of adhering to manufacturing guidelines that are necessary to produce high-quality and accurate strips and meters. When manufacturers skimp on cost, accuracy issues occur – for more information, please see the grassroots patient website about meter accuracy, StripSafely.com (disclosure: I am an unpaid editor for the site).  Or look at the FDA’s new proposed draft guidance for blood glucose meters (please submit comments!), which make it clear that glucose meter accuracy is an important – and underacknowledged — issue.

– The article states that the recently implemented competitive bidding program for diabetic mail-order supplies (which the Times has done an unfortunately incomplete job of reporting on before in its New Old Age blog) has reduced costs to the government by 60 percent. That sounds great, but it is an oversimplification: the competitive bidding program has also severely reduced Medicare recipients’ access to their supplies. A recent study done by the American Association of Diabetes Educators found that out of 23 suppliers that were awarded contracts under competitive bidding, only three (3!) are actually carrying the brands of testing supplies that they reported to Medicare, and none are offering a range of products that represent more than 50 percent of the market, as intended by Congress. This is particularly worrisome given that not all meters on the market today are equally accurate (see StripSafely.com for details – or just ask the FDA!), with the greatest accuracy issues existing in the lowest cost meters.

– The article states that if a girl with Type 1 diabetes were to switch to a new type of meter that cannot communicate with her pump, “her current meter would sit uselessly on her waist.” But blood glucose meters are not worn on people’s waists. And as noted above, it is not necessary for the blood glucose meter to communicate with a pump – blood sugar values can be entered manually to the pump from any meter.

– The article also inaccurately suggests that Haley will be forced to wear a continuous glucose monitor if she wants to keep using her pump. This is also untrue. While I personally believe that continuous glucose monitors should be available to every person with Type 1 diabetes, they are by no means mandatory – in fact, it often requires a substantial fight with your insurance company even to get one. Haley could easily forgo a continuous glucose monitor if she didn’t want one. (It is also very misleading to say that continuous glucose meters – which, by providing glucose readings every five minutes, make management easier, stave off highs and prevent life-threatening lows — constitute a “dubious improvement” over standard meters.)

In short, the article seems to imply that the very devices and drugs that have come as a godsend to many people with diabetes are wastes of money. I suppose different people place value on different things. But for me – and the millions of other people struggling each day to live with this disease – my life and health are worth more than an insulin pump. And we very much want to help the New York Times and its reporters to understand – and communicate — this point.

“It’s true that there are not presently any generic (better described as biosimilars or follow-on varieties) insulin, but FDA has a Congressional mandate to issue guidance for biosimilars, and draft guidance was issued over a year ago, so final guidance is due from the agency at any time. The article notes that insulin available when Haley was a child was derived from abbatoir animals. The claims on purity issues were true mainly in the 1920s through the early 1960s, but purification techniques (using high pressure liquid chromatography or HPLC) improved steadily over the time, and by the time Ms. Haley started using insulin, it had reached an unprecedented level of purity (Lilly’s Iletin achieved 98% or 99% purity by the time Ms. Haley was even diagnosed). As a result, reactions to animal-sourced insulin were extremely uncommon during the 1970s, and most stories of reactions to animal-sourced insulin occurred in the 1960s or earlier and were just that: stories. But earlier generation insulins worked less consistently [than today’s analogues], and the same was true for biosynthetic human insulins.  That had more to do with subcutaneous injection and the fact that insulin injected tends to dissociate the molecule’s hexamers into dimers and monomers which are much slower to be absorbed into the blood. Analogues supposedly solve that issue, and there is now over a decade of clinical evidence to validate this.”  

Catherine Price

Catherine Price (www.catherine-price.com) was diagnosed with Type 1 diabetes when she was 22 years old. She has written for publications including The Best American Science Catherine Price is a professional journalist who was diagnosed with Type 1 diabetes when she was 22 years old. Her work has been featured in publications including The Best American Science Writing, The New York Times, Popular Science, The Los Angeles Times, The San Francisco Chronicle, The Washington Post Magazine, Salon, Slate, Men’s Journal, Health Magazine, The Oprah Magazine, and Outside, among others. A graduate of Yale and UC Berkeley’s Graduate School of Journalism

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Catherine Price

Catherine Price was diagnosed with Type 1 diabetes when she was 22 years old. She has written for publications including The Best American Science Catherine Price is a professional journalist who was diagnosed with Type 1 diabetes when she was 22 years old. Her work has been featured in publications including The Best American Science Writing, The New York Times, Popular Science, The Los Angeles Times, The San Francisco Chronicle, The Washington Post Magazine, Salon, Slate, Men’s Journal, Health Magazine, The Oprah Magazine, and Outside, among others. A graduate of Yale and UC Berkeley’s Graduate School of Journalism