Monday, August 13, 2012

Should've Cured Me at Least Twice Now

So here's what's been on my mind this week:  The Cure.  (Not this one, either.)

I've had type 1 diabetes for just over 22 years now.  It seems that every person I know who has been touched by diabetes, patients and caregivers alike, heard one line as part of their diagnosis story.  That line is something like, "But it's possible there's a cure about ten years down the road."

Whether the person with diabetes is 16 or 65, it seems like we've all heard it so many times.  I'm here to make a confession today:  I'm cynical about it.

Today, I am 30-and-a-half, and in the past week, there was obviously a great press release from Dr. Denise Faustman's lab at Mass General, touting that the promise of Type 1 Reversal could lie within a generic vaccine for TB that has been around for years.  I saw the story run on multiple news outlets.  It gave me a glimmer of hope for a second, just like news of artificial pancreas research gives me momentary glimmers of hope.

Reuters News tried to take a balanced approach by stating that Dr. Faustman's research has at times been controversial, though this could be an important finding.  They quoted a doctor from Columbia University Medical Center who stated the findings may just be "a bit of magical thinking".  The story informs us that the generic TB vaccine only seemed to restore insulin production for a week in trial patients.

How am I supposed to believe there could be a cure in my lifetime if medical professionals don't see the validity in each others' research?

In fact, the Reuters story continues about Dr. Faustman and her project: "JDRF rejected her funding requests and circulated a 2003 letter from two of her colleagues at Harvard Medical School, casting doubt on her work and apologizing to diabetics for 'having their expectations cruelly raised' by stories about her research."

You know, haven't my expectations been "cruelly raised" for 22 years now?  Some people complain that we're living in the future and we still don't have flying cars, or we still haven't reduced our dependence on foreign oil, or President Obama hasn't magically waved his arms and created a job for every unemployed American.  I say, it's the future--and we still haven't cured type 1 diabetes!  (Or AIDS or HIV or cancer for that matter...)

What angers me about this news item about Dr. Faustman's lab and research is that this is a news story about science and research.  Aren't scientists supposed to keep testing their hypotheses?  If one scientist has some success in her hypothesis, shouldn't other scientists maybe try to refute or support one scientist's claims?  Just because Dr. Faustman didn't win the JDRF seal of approval is no reason for people to give up on research that has at least worked some of the time.

Even if the Faustman Lab research doesn't lead to a diabetes cure, what if it made something that made managing type 1 a lot easier?  I'm insulin resistant.  I've tried Symlin, and it's made me feel icky.  I tried Metformin with my insulin, it produced some rather unpleasant gastrointestinal side effects as well.  What if something from the TB vaccine could increase the effectiveness of my injected insulin?  There were no adverse side effects reported in the study, apparently.  I'd try that.

Even worse about the news from Dr. Faustman's lab is a view that made me relatively irate regarding the pharmaceutical industry.  Bloomberg reported that, "[Faustman] tried to interest every major drugmaker in developing the vaccine as a possible cure for diabetes. All told her there wasn’t enough money to be made in a cure that used an inexpensive, generically available vaccine".

If pharma wants to be as involved with the patient community as they would like to be, they need to keep the interests of actual patients in mind.   That sentence there basically tells the world that if there ain't money to be made by it, pharma doesn't want to cure you or even try to if they can't do it on their own ridiculously-priced dime.

What about the artificial pancreas projects and the closed loop systems?  Maybe it's better to be a med device manufacturer than a drugmaker in this case.

Either way, none of this news makes me feel better about ever getting a true cure.  Having a fancy cyborg system that checks my blood and acts like my pancreas with minimal supervision from me does sound pretty fantastic right about now, but is the day ever coming that we've all dreamed about when we were first diagnosed?

You know, the fateful day when we get cover-up tattoos for our "diabetic" medic alert tats, when we have a massive disposal party for all our diabetes supplies, when we can eat a cupcake and have our body provide a bolus instead of our fingers and some stuff from a vial.

Here's where I'm cynical.  Maybe this could be an unpopular opinion around the diabetes online community, but why bother to sugarcoat it?  (Ha ha, puns.)

How do we expect to ever be cured when medical professionals can merely argue over what is the best possible tract?  How do we expect research toward a cure to get done when pharmaceutical companies (who have all the major money out there) won't fund the trials that are necessary to prove efficacy?

How does pharma think they are going to earn the trust of empowered patients when news gets out that they won't help the very efforts many of us have been praying for since we were young?

Are we going to see a cure within the next ten years?  I'm not so sure about that, but I've been given a lot of reasons to feel disappointed.  Maybe if someone can prove otherwise, I'd feel a little more sunny on a diabetes-free outlook.

(Also, I'm curious, has anyone out there seen any research on how the Faustman lab is doing it wrong?  This is the internet, surely someone must have heard something...)


10 comments:

  1. A friend and I worked out that a diabetic diagnosed in their teens and living until they are 70 means about $1,000,000 to various drug companies. Want the price of a cure, there it is.
    Or we can hope that an independent organization, hopefully one like JDRF which doesn't have profits as their primary motive (we hope) can drive research to where it should be. Either way, I'm with you, a cure is a long ways off. But I'm not so sure I'd like to see that research money spent on artificial pancreases (pancreases? I guess autocorrect likes it) if it is diverting spending from potential cures.
    Regardless, good post.

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    1. Eh, the way I see it, if you can't cure me outright, at least make diabetes something that practically manages itself.

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  2. Anonymous8:14 AM

    Call me cynical, but I don't think there will ever be a cure for diabetes (or cancer, or AIDS, or. . .) because these diseases make far, far too much money for those involved. What about the researchers that work on this stuff? What about everyone involved in JDRF? And the ADA?

    Those people wouldn't have jobs anymore. They're never going to get rid of their giant cash cow.

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  3. I have so many thoughts about this that I don't even know where to begin. May have to write my own blog post! But, in short, I do think that Faustman's research has merit, even if it just produces a drug that makes my body able to produce a little insulin, thus giving me slightly better control and helping me prevent long-term complications. That would be significant. I DO have issues with the government and JDRF backing the artificial pancreas (AP) project. The AP is a technological advance, NOT A CURE. It uses the same technologies we have now (pump & CGM), but allows them to interact with one another. In using these devices, we will still have all the same issues with pumps and CGMs that we have now (failed infusion sites, sites that come off, whacky CGM readings, need to calibrate, etc). For the foreseeable future, we will still have to check our blood sugar and still have to do a lot of the things we do now (change sites, change sensors, monitor for DKA, etc). Granted, it might be nice to not have to diligently count carbs, but still I don't see this as a HUGE improvement.

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    1. I think there's so much merit in backing innovations and research, I agree there.

      My biggest hope for the backing for the AP project is that continuous glucose monitoring can become as accurate as testing your blood. I have a terrible habit of eating and forgetting to bolus. I'd love to have a pump that could cover that for me. (And nobody tell me I could just set a reminder alarm. I know that. I also know where the 'off' button is.)

      I'm glad there's funding for the AP project, I do think it could be a good step forward. But hey, insulin was a huge step forward, and that was the 1920's. Then rapid-acting insulins, and that was, what, the 1990's? We are due for a breakthrough innovation.

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  4. Ultimately, the need for a cure needs to be universally accepted, and frankly, the endocrinology profession is hostile to the idea. Instead, they see diabetes "control" as a game they can somehow "win" with education, better and ever-more-costly tools, etc. However, Deb Butterfield once wrote http://bit.ly/MuIi31 : The public perception of diabetes is influenced by our personal testimonies, and we have allowed diabetes to be portrayed a disease that is no more than a minor inconvenience. In order for this disease to be cured, there needs to be a fundamental shift in the way diabetes is viewed. We need to close the gap between the perception of diabetes as a "controllable" condition and the reality that it is one of the world's oldest, deadliest, and most pervasive diseases. She went on to pose the question of what would happen if a diabetes campaign were to announce "Diabetes disables and kills. Only a cure can stop the suffering," with pictures of a little boy leading his blind mother around a grocery store and a voice-over explaining that diabetes is suffering. This campaign would create a fundamental shift in the way diabetes is perceived. The public would see diabetes as the enemy, as we see cancer and AIDS as enemies. They would worry that if it isn't cured, it could happen to them, or to their children. A "Diabetes Disables and Kills" campaign could change the face of the disease by removing the smile that has so long been attached to it in product advertising and brochures in doctors' offices and pharmacies. Perhaps public outrage that there is no cure yet would create political pressure to increase funding for cure-focused diabetes research.

    Instead, we rally around how manageable diabetes is and "You Can Do This". I'm not saying a campaign like that isn't valuable, only that we reinforce the message that diabetes does not need to be eradicated.

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  5. sometimes I forget that there actually could be a cure and my heart skips with a beat of joy! But then I remember that they were telling everyone that there was a cure 'in ten years' 40 years ago. :( as much as it pains me to say it, I have a feeling we'll never get one. We make too much money for the companies. I don't want to believe that people are that heatless as to deny us a cure, but hey, humans have done worse things! plus people see us as being 'cured' with insulin anyway - the amount of times i've heard 'Hey! You could be dead!' -_-

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  6. Anonymous5:08 PM

    you might want to read:
    cureresearch4type1diabetes.blogspot.com

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  7. It's true, if someone did create a cure, big pharma would lose billions...gotta wonder how fast they're trying to find something?

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  8. IF they do find a new diabetic cure in the future, it will definitely cut down the cost of cozaar and other deiabetid meds.

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