An Open Letter from @AskManny, @DiabetesHF to @NYTRosenthal, @NYTimes

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Dear Ms. Rosenthal:
I am a person living with type 1 diabetes since the age of 30. I am also the President and co-Founder of the Diabetes Hands Foundation, a nonprofit aimed at connecting and mobilizing the diabetes community.

Seeing the hundreds of responses you have received to your piece “Even Small Medical Advances Can Mean Big Jumps in Bills” this weekend, by now I am sure you realize it struck a chord with the diabetes community.

As many other people with diabetes, I was ecstatic to learn that the New York Times had devoted its home page to the topic. We are glad diabetes got this kind of exposure and that the very real issues related to every day cost of diabetes management were brought up. Indeed, considering the impact of diabetes in the cost of health care in the US, it’s encouraging to see type 1 and type 2 diabetes get more media attention. Not giving it the attention it deserves our future prospects will be very grim indeed.

However, cost savings in diabetes cannot come at the expense of quality. This is a part of the story that wasn’t clearly conveyed in your article.

We learned from the American Association of Diabetes Educators findings on how Medicare’s Competitive Bidding Program limits access to accurate blood glucose monitors has serious health implications. Competitive bidding does cut reimburse for test strips by 60%, it does so at the expense of quality. I invite you to read how representatives from academia and industry have consistently identified low-cost meters (many of which won the competitive bidding process) as inaccurate. People who determine their dose of insulin based on an inaccurate glucose meter reading can end up in the Emergency Room. This is a far more costly proposition to the system as a whole, and is estimated to cost about $640 million per year! (according to figures from the American Journal of Managed Care and a recent study published on JAMA Internal Medicine).

While the cost side of the article overlooked the hidden preventable costs such as ER visits, it was Dr. Joel Zonszein’s references that shocked me the most. His comments on the uselessness of talking meters (there’s an increasingly limited number of them market) and “sensors reporting minute-by-minute sugar readouts” were baffling to say the least.

According to the National Library of Medicine, diabetic retinopathy (a complication related to uncontrolled diabetes) is the number one cause of blindness in U.S. adults.” This illustrates the perfect situation where talking meters are called for

Also a 2008 landmark study funded by JDRF demonstrated the positive impact that Continuous Glucose Monitoring (CGM) has on blood sugar control. As a CGM user, I can attest to how much it has helped me improve my diabetes management and how many times it has literally saved my life, alerting me to a dangerous blood sugar low in the middle of the night. So I join the JDRF and the advocates who are insulted by Dr. Zonszein’s remarks.

The damage is done… or is it?
The average person read the piece and has already moved on, with their mind made up about people with diabetes who insist on wearing the latest or coolest “iAnything” (as my friend Kerri Sparling wrote), at any cost.

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.

We want you on our side.

Please consider actively including the voices of the diabetes community in future articles. We invite you to take us up on the idea of having an identified group of diabetes patient advocates to consult with as sources. By working together in this way you will have reliable access to the informed, real-life patient perspective and we will help the public better understand what it takes to live long, healthy lives, in spite of diabetes.

Contact me directly at manny@diabeteshf.org. I am happy to facilitate introductions.

Sincerely,

Manny Hernandez – @askmanny

P.S. Below you will find links to all the pieces written by some of the foremost diabetes advocates that we’ve become aware of, so you may have a convenient place from which you can access them.

Update (April 11, 2014):

While the New York Times still fails to address some of the points made by members of the diabetes community, today Margaret Sullivan (the newspaper’s Public Editor) published a post acknowledging areas of the article that could have been handled differently.

Also, below is the reply we received from the author via email, which she encouraged us to share here.

Dear Mr. Hernandez,

Thanks for your note. I’ve looked the Diabetes Hands Foundation website and understand some of the important work you do for people with diabetes. I will reach out in the future.

That said, as I hope you noted, there were many people with Type1 diabetes in the story. The people I quoted are very much part of the diabetes community and were just a fraction of the many patients, physicians, and industry officials I interviewed for the article. The idea for the story, in fact, originated with comments made by more than 200 NY Times readers with T1D who had commented, in response to questions embedded in previous stories, on the the high and rising costs of their diabetes treatment, often despite good insurance.
The article is clear that the treatments for diabetes have vastly improved (beginning in the second paragraph), and the story in multiple places acknowledges the benefits, some of them lifesaving, of improved drugs and devices. The question it raises is why they are priced so high in the United States, relative to other countries — an important question given that this is vital treatment and many patients find it unaffordable. (By the way, this article was part of a series examining why health costs for treatments — procedures, drugs and devices — are expensive, and how they cumulatively cost more than extraordinary treatment or end of life care.)

The article does not belittle the importance insulin pumps, or cgms for appropriate patients. That is obviously between a doctor and patient. It shows they can be transformative. It does not say that people who are visually impaired don’t deserve a meter that talks. They, of course, do. But a question the article raises is why, at diabetes fairs, for instance, talking bilingual pumps are being aggressively marketed to people who do not require them, driving up prices for all. With the prices for things like test strips and continuous glucose monitor sensors relatively high, I hear from the many people who simply can’t afford them. And some who do things like skimp on insulin or cut back testing, endangering their health. But I’m sure that’s not news to you.

So for now, thank you for your interest and your letter.

Regards, Elisabeth

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