ADA’s Richard Kahn Drops a Bomb

About 10 days ago, the annual meeting of the Diabetes Technology Society took place right here in my SF Bay Area neighborhood. Over 800 scientists, engineers, and doctors from government, industry, academia, and clinical practice gathered for this annual consortium on what’s new in everything from non-invasive glucose monitoring to nanotechnology to the artificial pancreas project.

Just as last year, I had hoped to cover this event live, but was put off by the exorbitant entry fee — the organizers do not grant affordable media access, *sigh* You can read a summary of the presentations over at the ChildrenWithDiabetes website.

But what apparently really shook the walls this year was the keynote speech by Richard Kahn, Chief Scientific Officer of the American Diabetes Association, who came across as “dismissing the technology that in particular people with Type 1 diabetes use to keep healthy — insulin pumps and glucose monitors,” a number of influential attendees tell me.

I use the phrase “came across” on purpose, because you won’t see any direct hits if you read the “very vanilla” published script of Kahn’s speech (you can download it HERE). But his demeanor and the many asides he made during his talk “stunned” everyone in the room — all people who’ve devoted their careers and lives to diabetes technology.Kahn_with_note

In the cryptic speech, Kahn’s point seemed to be that no randomized control trial has ever shown the actual benefits of using insulin pumps (A1c, glycemic variability reduction), and the same goes for fingerstick monitoring of Type 2′s on oral medications. What the audience heard was Kahn “calling into question the cost-effectiveness of all diabetes technology.” Note that nowhere in his speech does even mention the terms “Type 1″ or “Type 2.” Looks like we’ve got some lumping going on here, of all PWDs into one big bucket — from the ADA itself?!

“To sum up a half-hour talk in one sentence, (Kahn) essentially said that if you want to keep patients with diabetes healthy, just have them take their meds on time,” Jeff Hitchcock, director of ChildrenWithDiabetes tells me. “I think he has no sense of what living with Type 1 diabetes is all about, and the tremendous impact that technology has had on the patients, and their families.”

Renowned industry consultant Kelly Close, who covers the DTS conference every year with her research team, was — in a word — blown away: “As a patient, I literally felt like I’d been run over by a bus. It was very threatening… I’m worried about what this guy is whispering in the ears of lobbyists in Washington, DC.”

It is frightening that someone like Kahn, who in his position with the ADA is arguably the most visible spokesperson for diabetes in this country, would deliver a speech essentially dissing the value of new diabetes technologies — and at the country’s top gathering of D-tech experts, no less!

See the patient discussion thread on Kahn’s remarks at the ADA Message Board (of all places :)

Another attendee, who preferred to remain anonymous, explained it to me this way: “I think (Kahn) was sending pre-emptive strikes, saying I’m not sold on this… He’s skeptical about CGM, he doesn’t like the data on insulin pumps… He’s been pushing this message in the Type 2 world for a while, but hasn’t tread into the Type 1 arena –- but now he has in a pretty aggressive way.”

Kahn is a savvy professional communicator. He speaks for the ADA, which supposedly speaks for us, the Diabetes Community. Is this the type of advocacy we want?

Think of the ramifications. If the ADA comes out with an official position that there’s no value in using an insulin pump, or a CGM system, or even a fingerstick meter if you’re a Type 2 not on insulin, the Powers That Be will listen. Insurance providers are already resistant enough to covering our preventative needs. (They’d rather defer until we’re older and develop severe complications, which will then become Medicare’s problem)

I for one believe we need to speak out here, before Kahn’s view becomes the ADA party line and insurance providers stop covering insulin pumps altogether. Kelly Close and I plan to draft some kind of patient petition to protest, which I hope to post here asap. Stay tuned.

Thank goodness for blogs and social media, btw. This type of thing has gone on behind closed doors for far too long. Let the patient community have a voice on the relative value of the technology we use to manage our condition. I bet the ADA will get an earful!

32 Responses

  1. Anne
    Anne November 6, 2007 at 5:11 pm | | Reply

    Meanwhile, the JDRF is actively pursuing the “artificial pancreas” project using the very same supposedly useless technology. I wonder if Kahn might have some undiagnosed neurological condition, eh? Seriously. It seems bizarre. Are these typical comments coming from him?

  2. Anne
    Anne November 6, 2007 at 5:31 pm | | Reply

    Okay, so I just read the whole thing. Aside from some insensitivity to what living with type 1 is all about, he does, I admit, raise valid points about health care costs. I would disagree, though, that new technologies are readily accepted just because they work. It took years for insulin pumps to be widely accepted and we can see that getting cgm’s accepted will also take some time.

    But as you suggest, we don’t have the original talk as spoken so I will take your friend’s word for it…

    I remember when the DCCT results came out, I felt like saying, “Duh, isn’t that all obvious?” But the research needed to be done and has become the justification for all of this measuring and careful dosing (even though those measures were practiced before the DCCT). Has no research actually shown that insulin pump therapy is advantageous? I’d be really surprised. I can hardly imagine the ADA ever coming out against pumps, except for certain populations (eg, certain type 2 diabetics).

  3. Lili
    Lili November 6, 2007 at 5:37 pm | | Reply

    Here are some of the ADA’s corporate sponsors:
    Lifescan
    Roche
    Minimed
    Abbott
    Nipro
    Animas
    Disetronic

    I wonder how they’d feel about that speech.

  4. Sara
    Sara November 6, 2007 at 6:14 pm | | Reply

    And I’m sure he knows what the daily life of a diabetic is like and how his ‘advice’ will affect our lives.

    Has he been hanging out with Halle recently?

  5. Seonaid
    Seonaid November 6, 2007 at 8:06 pm | | Reply

    Thanks for the comment, I added your site to my blogroll .

    something really should be done about this though.. how can he be a spokesperson for ADA?!

  6. Rick Stockton
    Rick Stockton November 6, 2007 at 8:18 pm | | Reply

    I initiated the discussion Thread at ADA’s “Type-1″ forum. But since the most AMAZING and APPALLING recommendations was with regard to “Type-2″ pts. on oral meds only (that they shouldn’t be getting ANY coverage for strips, that’s unproven technology) I brought it up there too– and it got a lot of comments.

  7. Hannah
    Hannah November 6, 2007 at 8:19 pm | | Reply

    If you two come out with a petition, I’ll sign it at least three times if I’m permitted!

    We don’t need people spreading more unhelpful crap. Geez.

  8. sri
    sri November 6, 2007 at 9:17 pm | | Reply

    I’m writing a letter to the ADA requesting a cancellation of my membership. If enough folks do it, maybe they’ll get the message.

  9. Sarah
    Sarah November 6, 2007 at 9:26 pm | | Reply

    I dunno…this is a paradox.

    1.) Since when has the ADA ever represented Type 1′s anyway? The ADA is known for being primarily focused on Type 2 diabetes.

    2.) While it does piss me off that as usual that T1 vs. T2 are lumped in the same boat, he does have a point that technology is not *necessarily* the key to Type 2′s doing well. Weight loss, a strict diet, and lots of exercise IS. Apparently there is a good number of T2′s who test…and learn and do nothing from that info. Perhaps he is trying to promote healthy living as opposed to a T2 thinking that they can eventually “get a pump” instead of control their disease.

    Unlike a T1 who must adjust their insulin to live, a T2 may look at a high number and shrug it off as one too many donuts at breakfast. The key to managing T2 is primarily lifestyle, which brings down sugars quite well without any risk. A new study has even found that giving insulin to T2′s may cause them to become insulin dependent. That in addition to making them even more insulin resistant and overweight. All a recipe for disaster.

    3.) Perhaps this guy is on to something. Perhaps he is pointing out that we are cash cows and that the answer to diabetes management is NOT technology. Face it people, no matter what JDRF tells you, an “artificial pancreas” will NEVER exist before a true cure for T1 diabetes is found. I personally guarantee it. Your money is going to fund career researchers while they play around in their labs for the next 30 years. With today’s “modern” faulty pumps and sensors, do you REALLY think a company would take the risk of using technology to completely and successfully replace a pancreas? Never going to happen, it can’t be done. The artificial pancreas is a pipe dream folks. Do YOU want to spend $15 000 per year on pump supplies (plus pump) for a bulky piece of crap that may misfire and kill you? Technology can’t replace a pancreas, folks, sorry.

    Why is JDRF wasting time on this crap when so many REAL cure breakthroughs are happening in xeno, regeneration, and stopping autoimmunity areas of T1 research? REAL solutions that can *actually* cure T1.

    Is this guy just another ignorant fool who forgets T1 is an entirely different disease or even exists? Perhaps. This is common in those who are trained in non-white societies where T2 is virtually the only form of diabetes.

    But perhaps he is on to something. Perhaps he is speaking the truth. Thinking long term using expensive and inadequate technology as a solution to diabetes is a mistake.

    So while I am just as p’od as everyone else that as usual no one including the “experts” has a friggin clue about T1 (dangerous), he also perhaps is on to something.

    I assume ADA will fire him for blatantly disrespecting their corporate sponsors. And you know what? Perhaps this is a good thing! The trouble with ADA is that they are relying on Big Pharma to guide their vision in the first place. When ADA was started to help find a cure for Type 1 diabetes (T2 was rare and usually not serious), they wanted to find a cure…not promote a lifetime of dependence on Big Pharma.

  10. Janet
    Janet November 6, 2007 at 9:48 pm | | Reply

    Since my son was diagnosed with Type 1 last year, I’ve given as much time and money as I can afford to the JDRF. I’ve suspected all along that the ADA didn’t really have my son’s best interests in mind, but now I’m afraid it may actually be hazardous to his health. Please tell me that Richard Kahn doesn’t treat patients! BTW, Sarah, if the JDRF diverts some of its funding to the Artificial Pancreas Project, that’s fine with me. The cure could be years or even decades away, and I’d like to keep my kid healthy until then.

  11. Kathy
    Kathy November 7, 2007 at 1:35 am | | Reply

    I was appalled at Dr. Kahn’s comments. He seems to think that Diabetes can be controlled by taking medications or insulin at a certain time. Testing is important for both type 1 and type 2. His attitude towards technology and the daily tools we use to stay in control is the worst I have ever seen. He does nothing to help anyone with Diabetes including both Type 1 and Type 2. I hope the ADA wakes up and finds a true advocate. I certainly would not pick him as a doctor to help me manage my diabetes.

  12. Adam
    Adam November 7, 2007 at 5:29 am | | Reply

    The ADA does not speak for me. It never did. The ADA speaks for people who derive their income from treating PWD’s (people with diabetes), mainly so-called health care professionals such as doctors, nurses, and dieticians.

    I am just a regular guy with diabetes.

  13. Adam
    Adam November 7, 2007 at 5:33 am | | Reply

    A regular guy with type 1 DM.

  14. Penny
    Penny November 7, 2007 at 5:55 am | | Reply

    He seems to be biting the hand that feeds him, so to speak.

    I’ve never paid too much attention to what the ADA has to say. The ADA recommends my child’s A1C be between 7.5-8.5. What? That’s and average of 190-225. Do I really want my son’ average to be 225?

    The problem is that the first resource the general public will turn to (and I’m afraid the insurance companies too) is the ADA.

    I’ll sign the petition.

  15. Jonathan
    Jonathan November 7, 2007 at 6:27 am | | Reply

    Unhappily, this is another instance of Type 2 getting all of the attention. 25 years ago, when I was first diagnosed, the ADA covered both T1 and T2. Over the last few years, T2 has been getting all of the attention, both from ADA and from the mainstream media. (The New York Times has done a series of articles over the last year or so, with most of the focus on T2.)
    We read all the time about obesity and eating habits contributing to the epidemic of “diabetes” nationwide, but when the media talks about “diabetes”, they really mean T2. As a result, PWOD (people without diabetes) generally only understand about T2 — they wonder what we T1s have done to cause us to be diabetic.
    T1s and T2s are similar really only in the impact that long term high blood sugars will have on our health. I would personally give anything to be a T2 — then my diet and exercise and oral medications would likely be enough to keep me healthy, instead of measuring food, counting carbs and managing boluses and basal rates. Without denigrating T2s, T1s need to be incredibly smart and detail-oriented to manage our condition.
    We can never take a moment off.
    As for the “health care” industry and the possibility of a cure for T1 — it will never happen. I (or my insurance company) spend 6000 a year on test strips (insured), 3000 a year on pump supplies (insured), 3000 a year on CGM supplies (uninsured), 5000 a year on insulin and other medications (insured), 2000 a year on my CDE (marginally insured) and 3000 a year on my endo (marginally insured). We are cash cows for the medical industry. If they came up with a cure for T1, much of that would go away. The most important thing for their bottom lines is to keep us healthy enough to continue to be captive customers who will spend just about anything to keep our quality of life for as long as we can. Have you ever noticed that all of the new advances are only a marginal improvement that may improve our control or treatment, but never get us to the cure? We are a profit center for the “health care” industry. They are very smart people and will never give up this cash cow.
    Our so called advocacy organizations — ADA (LOL) and JDRF — need to do a better job of getting the message out that we need a different approach to long-term treatment, and that we need to be focued (not just paying lip service to) on the cure, not more medications. We also need a new approach to the media — a need to really educate PWODs about the difference between T1 and T2. ADA has failed at this. We really need a completely new approach.

  16. Ed
    Ed November 7, 2007 at 6:40 am | | Reply

    At the Tour De Cure last year I got an awful feeling about the ADA. I am appaled that on their website there is not a list of top endos in a given area and have been even more shocked at the cookie cutter approach they take to explaining the disease in their literature and on their website. Amy – you have the loudest voice of all of us; lets get something going to change the way the ADA approaches our disease and get some actual support from the non-profit community (outside the JDRF).

  17. Dave
    Dave November 7, 2007 at 8:12 am | | Reply

    I’ve seen other organizations that exist solely to be an organization, an income stream for their executives. They see their membership as a product, and their members as a market. Beyond holding conferences, they do little if anything at all on behalf of their memebers. It’s too bad, but that is the way it is.

  18. Bennet
    Bennet November 7, 2007 at 9:18 am | | Reply

    ADA’s Director of National Youth Initiatives MAry Pat King responded at CWD:

    http://forums.childrenwithdiabetes.com/showthread.php?t=8441&page=2

    Saying in part:

    “I hope you read the speech. My personal opinion is that Richard represented our constituents — patients and health care providers — by making a call to action to industry and researchers to develop more efficient, cost-effective and evidence-based technologies that improve the systems of delivering high quality patient care. ”

  19. Titos
    Titos November 7, 2007 at 10:14 am | | Reply

    I think his comments were well balanced and well thought through, even if he was perhaps near-sighted about a few things.
    But nobody can argue with the facts that the US spends much mre money for health care per capita than anybody else, yet achieves comparatively very poor results or that costs (prices) of medical technology are always on the rise or that it would be very cost effective to find ways to deliver existing treatment solutions more efficiently. The comments on blood glucose monitoring and insulin pumps referred clearly to Type 2s.
    By the way if costs are not controlled soon (and this is a systemic issue having to do with health care system in the US in general and the problematic state of health insurance)payors will eventually balk at the bills which will be very detrimental to patients.

  20. Sarah
    Sarah November 7, 2007 at 11:33 am | | Reply

    The ADA doesn’t speak for people with diabetes, in my opinion. It’s so-called “experts” are either pawns of the organization’s underwriters and/or bureaucrats who have found a platform for their personal career aspirations. Poor science, poor representation and a lot of conflicts of interest. If I followed the ADA’s recommendations for “control” I’d be a physical wreck (but I’d be making assorted health care “professionals” rich from the costs of their “care”.

  21. Big_Dave_T
    Big_Dave_T November 7, 2007 at 12:00 pm | | Reply

    I imagine this doctor, as many doctors in the health care industry, is caught in the crossfire between health insurance companies demanding more value (“value” being the new buzzword in business today) and big pharmaceuticals pushing their own products.

    Does the ADA have any patients in policy-making positions? If not, that’s unconscionable. They should. I nominate you.

  22. Melitta
    Melitta November 7, 2007 at 1:05 pm | | Reply

    It is ironic that Kahn laments the poor quality of diabetes care in the United States, when ADA itself is a promoter of poor care. ADA fails to distinguish between two different diseases, Type 1 diabetes and Type 2 diabetes. ADA fails to head-on address the fact that Type 2 diabetes is a preventable disease, and prevention is less costly than cure (and here I mean true Type 2 diabetes, which does not include slow-onset autoimmune diabetes (aka LADA) or MODY, etc.). ADA misrepresents the number of Type 2′s in the US by including the largest population of Type 1′s (that being adult-onset Type 1 autoimmune diabetes) in the statistics for Type 2 diabetes. ADA is the promoter of wrong information about Type 1, and ADA is no friend of Type 1′s.

    posted by Melitta who loves her technology (Mr. Pumpy!) and wants Mr. CGM to join Mr. Pumpy

  23. Felix Kasza
    Felix Kasza November 7, 2007 at 1:23 pm | | Reply

    OK, would all the commenters who have actually read the speech please raise a hand?

    The text is available at http://professional.diabetes.org/News_Display.aspx?CID=57894&TYP=9, and I highly recommend reading it.

    For instance, here is what Dr. Kahn had to say about insulin pumps and SMBG:

    “Laser photocoagulation, insulin pumps, [...] and many more technological advances, have given people with diabetes a far better life [...]. They have certainly saved lives, improved many more lives, and made diabetes manageable for millions of people. Yet in some instances, for example self-monitoring in type 2 patients on oral drugs, the technology was not preceded by any long-term, randomized controlled study showing benefit. Of note, for that technology, even now, we do not have robust proof that the technology works in such patients, yet Medicare is spending over 1 billion dollars to provide it.”

    Dr. Kahn is stating verifiable facts, and he is not even speaking out against pumps or SMBG — he is saying that there is not a single study that shows SMBG to have any positive effect in diabetics who do not take insulin.

    So, what is this hubbub all about?

    Cheers,
    Felix.

  24. WC
    WC November 7, 2007 at 3:35 pm | | Reply

    Unfortunately, I think you might find the insurance industry to be the biggest champion for a cure. After all, they stand to lose the most if technology wins.

  25. jeff
    jeff November 7, 2007 at 7:32 pm | | Reply

    Amy what an irresponsible blog entry you have posted. Read his speech. You were not there. You can not possibly be credible by making sweeping statements that “everyone in the room was stunned”

    We have the text to examine and unfortunately irresponsible bloggers to judge with no real objectivity. I have type 1 and I think the best way to control my diabetes is to manage my numbers first and foremost—then manage technology 2nd

    In the future, please do not make personal comments on something you did experience first hand

  26. AmyT
    AmyT November 7, 2007 at 8:09 pm | | Reply

    Jeff,
    You are entitled to your opinion, to be sure. This post is simply reporting on conversations with audience members — highly informed, industry-connected people who were quite upset over Kahn’s speech. I also read the script carefully myself, and was quite surprised. Please keep your eyes peeled for my follow-up post.

  27. Lauren
    Lauren November 8, 2007 at 12:08 am | | Reply

    But Jeff, you’re using technology to manage your numbers, aren’t you? The A1c test has only been around since the seventies. Glucose monitoring is also relatively new. Only in the past 15 years have there been a lot of studies about the benefits of tight control. Technology has helped us (I’m a type 1) take the reins and properly self-manage.

  28. Jim
    Jim November 14, 2007 at 9:44 pm | | Reply

    I have never had any faith in the ADA. They are beholden to their corporate sponsors and as such I don’t think they do much in the case of being advocates for diabetics.

    Great Post Amy. Keep up the great work.
    :-)

  29. Undiagnosed
    Undiagnosed July 4, 2008 at 5:17 pm | | Reply

    arrrgggggg the medical profession….. how frustrating it is for all of us in chronic pain.
    Love your articles !

  30. ADA is a Joke
    ADA is a Joke January 18, 2009 at 5:51 pm | | Reply

    ADA just cut research and what little they were providing for type 1 and kids is now next to nothing. While this Kahn may be a fool, look to their new CEO Larry Hausner. He is driving the organization into the ground.

  31. gagner argent
    gagner argent October 2, 2009 at 5:06 pm | | Reply

    But Jeff, you’re using technology to manage your numbers, aren’t you? The A1c test has only been around since the seventies. Glucose monitoring is also relatively new. Only in the past 15 years have there been a lot of studies about the benefits of tight control. Technology has helped us (I’m a type 1) take the reins and properly self-manage.

  32. Dina Shoptaw
    Dina Shoptaw February 25, 2013 at 3:50 pm | | Reply

    Excellent article. I will be facing many of these issues as well..|

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