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Even Small Medical Advances Can Mean Big Jumps in Quality of Life.

I came home after two days away to a flurry of discussion about Sunday’s New York Times article, “Even Small Medical Advances Can Mean Big Jumps in Bills.”

My knee-jerk response was to be thrilled that type 1 diabetes received above-the-fold coverage in the New York Times.  Reading the profile of and quotes from Catherine Hayley felt like a fair assessment of life with type 1 diabetes, and painted Catherine not as someone who suffered from anything, but who worked hard to power through a whole lot.  I wished the columnist had been more focused in her discussion (Is this article about health system economics?  The cost of treating type 1 diabetes?  The complications associated with diabetes as a whole?) but I am not the best person to discuss a lack of focus because … (shiny thing)

That said, the quote that really bothered me was right at the beginning:

“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and worries fade about dreaded complications like heart attacks, kidney failure, amputations and blindness, they have been replaced by another preoccupation: soaring treatment costs.”

Really?  It’s that simple?  I wish I was being dramatic, but every, single night before I go to sleep, I think about whether or not I’ll wake up in the morning.  It’s not a thought I belabor, and at this point, I sometimes debate the possibility almost pragmatically, calculating insulin on board and exercise I’ve done recently, thinking about my last A1C or EKG, thinking about how 27+ years of type 1 diabetes has affected my body.

I wish financial worries were replacing others, but instead, I worry about diabetes-related complications in addition to cost of treatment.  However, the trick is that these advanced treatments will allow me to worry about diabetes into proper old age, because I will live longer, and better, with access to this technology.

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).

One other quote was particularly frustrating, not because it was the study that was referenced, but because the study itself is over 20 years old:

“But that all changed after a landmark study in 1992 showed that patients did better if they maintained very tight control — keeping their blood sugar within a nearly normal range by checking it frequently and taking multiple insulin shots a day.”

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?  (Please tell me this study exists – I hope it does!)  We’re talking about modern-day diabetes treatments and lining these discussions with studies involving somewhat out-dated treatments.  I’ve seen the benefits of pumping and CGM use on my personal diabetes management, and I can only hope that the overall PWD population sees positive outcomes in their management when given access to these technologies.

The discussion I’ve seen across the DOC and the web at-large has been enlightening, and I’m really glad to see and hear people talking about diabetes with such excitement and passion.  Diverse opinions should be shared, and heard.  Progress is important.  Innovation matters.  And in my opinion, modern-day diabetes should be treated with modern-day technologies.

 


 

[hi, there are my disclosures]

 

 

18 Comments Post a comment
  1. Tory #

    In addition to everything you’ve said above, this also struck a nerve:

    The idea that, “people don’t need a meter that talks to them. That’s an incredible waste of money” is ridiculous to me, because this should be patient focused, not about the doctor’s opinion. And in reality, there are people who this is important to and since we do have to check our blood sugar multiple times a day, it should be in a way that is most helpful and useful to us.

    04/7/14; 7:51 pm
  2. What everyone doesn’t get is that this is part of a long series that NYT has been doing on high medical costs and that Type 1′s are this weeks targets.

    04/7/14; 8:26 pm
  3. Being a news junkie, I have spent an absurd amount of time over the years watching Congressional proceedings — from committee hearings to actual speeches on the House and Senate Floors. And in doing that, it’s very interesting to see how many times one of those elected officials either A. held up an actual copy of USA Today, NYT, WP, or WSJ; or B: cited a newspaper story on whatever topic they were talking about. I worry about how many elected officials or agency decision-makers could take this NYT story (or series of stories) and use it as justification in arguing that coverage and funding be cut for medical devices that might be even remotely considered “unnecessary.” THIS type of newspaper coverage is more dangerous than many realize, because it’s not an agenda-saturated ad in the newspaper but an actual story and it gets an incredible amount of play in situations that truly matter. And when you’re talking about people who generally don’t “get it” but are the ones deciding these issues that impact our lives, this is about as dangerous as it gets.

    04/7/14; 9:28 pm
  4. elsiroomom #

    I found the tone flippant, and the article poorly researched. I was really alarmed by the correction relating to glucagon at the bottom of the article – what that says to me is that she didn’t really do her research. Likewise, suggesting that a CGM which offers blood sugar readings is a dubious advance suggests a serious misunderstanding of what a CGM does. As I noted in my comment to the article (likely lost amid all the others) – a healthy person’s pancreas monitors their blood sugar continuously and releases life sustaining hormones in real-time. So, yeah. I get that it’s expensive, and I agree that there are real challenges around cost and coverage – but that doesn’t mean that people with diabetes are getting taken in by brightly colored toys, which is effectively what she suggests. (Even with your love of shiny things, LOL, Kerri).

    04/7/14; 11:35 pm
  5. Melitta #

    Yes, modern T1D equipment is expensive. But it is way less expensive than treating costly complications. My life has been greatly improved by technology, and no marketing had any influence on that.

    04/8/14; 1:30 am
  6. diaTribe has LONG wanted a modern-day DCCT but it wouldn’t have been possible til the G4, since no CGM would’ve been accurate enough in hypoglycemia. Now we have the tools but the funding for such a study would be $200 million or so – and there are no funds for it as far as I know. It definitely doesn’t exist right now. But boy we wish it did since if it were ongoing, we’d be able to respond to so much more in this sub-optimally researched piece. There is waste and we should all strive to get rid of it, but it doesn’t change the value of the technology and drugs – just stands as a wake up call that the value needs to be better proven or it could all be yanked away.

    04/8/14; 3:22 am
    • Emily Hastings #

      No drug company would ever fund such a trial, just in case it showed that all their profit-making bits of kit were not actually leading to improved outcomes for patients. And realistically, getting a large-scale, high power study funded by anyone other than a drug company is nearly impossible. Type I diabetes has a relatively large charitable muscle behind it, compared to a lot of conditions, but I doubt any charity would be able to drop that kind of cash without their other agendas seriously suffering.
      It’s the same for any medical treatment – it took years to conclusively prove that aspirin is beneficial in coronary artery disease, just because aspirin is a cheap-as-chips generic that’s been around for donkey’s years, so there was no money in it for the drug companies.

      04/8/14; 6:38 pm
  7. I was thrilled to see the cost of diabetes management discussed prominently. But agree about the lack of focus and a few off-point comments.

    Honestly, the editorial was far too long and might have made a better series. I have type 1 and I was extremely interested in the subject, but I only made it halfway through page 2 before life got in the way and I said, “I’ll come back to this.” I’m ashamed to say I haven’t returned to finish.

    04/8/14; 9:53 am
  8. Katie S. #

    Yes, the costs of diabetes care are ridiculous–especially if you don’t have insurance and consider the costs over your lifetime with diabetes. That was a good point to be made. I also liked how they pointed out that the US pays more for these devices because we have far less negotiating power than some European countries where they have government-funded healthcare.

    However, I refuse to believe that I am a burden on the healthcare system for no longer using pig insulin, syringes, and test strips that change color. In my opinion, the medical device manufacturers and drug companies do not innovate just for the sake of innovation. There are reasons behind each little upgrade that they strive to have approved by the FDA, whether that be patient comfort, more accuracy/efficiency, or insulin that more closely mimics the body’s natural insulin (at least compared to the previous brand).

    Are they making too much of a profit from my chronic illness? I don’t know for sure. I’m guessing there’s a decent profit in there if they are still in business. However, as long as I’m lucky enough to have insurance that covers the majority of my costs and keeps my out of pocket costs minimal, that’s not a big concern to me. I know others aren’t so lucky.

    04/8/14; 11:52 am
  9. Emily Hastings #

    I agree with most of the comments about the flaws in the article – a lot of it was woolly editorializing backed up with insufficiently researched ‘facts’. And, whilst it adds interest and journalistic colour to use personal stories from patients and doctors, I felt that rather too much reliance was placed on them – just because you can find one PWD, somewhere in the US, who feels a particular way about their condition and its treatment, doesn’t mean that that person represents the Universal Condition for all PsWD (or even all PsWD in the US!).
    The article was eye-opening for me in one way though – I thought I understood, as much as one can without experiencing it, the system of paying for healthcare in the US (hey, I follow Michael Moore, that’s got to be worth something, right?). I didn’t realise, though, quite how big the out-of-pocket expenses can be, even for a healthy person who happens to have Type I diabetes. It’s a hefty financial penalty for the bad luck of happening to get a duff draw in the genetic lottery. Thousands of dollars a year is the difference between being able to afford to run a car or not, buy a house or not, go on decent holidays or not, do a job you love rather than the job that pulls in the most money; even being able to afford to have a family or not. Scary stuff.
    I have chronic lung disease (and steroid induced diabetes – sorry, am not a bone fide Type I, my poor exhausted islet cells do work, after a fashion) and in 2007 had a 4 month hospital admission that included 7 weeks in Intensive Care and 8 weeks in the High Dependency Unit, not to mention some very expensive drugs and scores of interventions from the paramedical professions, including out-patient physiotherapy that continues to this day. Total cost to the UK National Health Service – in excess of half a million pounds sterling, possibly as much as a million pounds. And that’s not considering the ongoing costs to the NHS, for my 22 different daily medications (plus a once monthly injection of a monoclonal anti-IgE antibody which costs about a grand on its own) and increasingly frequent hospital admissions. If I lived across the pond, I’d be bankrupt many times over – permanently, since I’m unable to work and am dependent on benefits.
    Our National Health Service may be flawed – deeply flawed, indeed, and becoming more so, if our current government has its way – but it has saved my life many times over, and continues to do so every day. Right now, I have an infection and am lying in a High Dependency bed which costs something in the region of £2000 – 3000 a night. And I haven’t paid a penny. Do I really think I’m worth that amount of financial outlay? No, if I’m honest (I used to be a junior doctor, before I got sick, so the NHS has had its pound of flesh from me! – but now I don’t work, contribute nothing and am on benefits). Am I grateful to live in a country with socialized healthcare, which considers every human life to be of value? Yes, of course.
    21st century healthcare, with all the gadgets and technology that that entails, should be a right, not a privilege.

    04/8/14; 7:19 pm
  10. Emily Hastings #

    Sorry – maybe not the forum for my polemic on socialized medicine. And yet, it is pertinent – until I’m confronted with an article or blog about it, I rarely think of the cost of my treatment and the burden on the State. Maybe I’m naive or selfish, I don’t know.
    Kerri, sorry if any of this is inappropriate/off-topic – please redact as you see fit.

    04/8/14; 7:46 pm
  11. I really hope there ARE studies out there showing the positive effects of pumps, CGM, and other devices on patient outcomes.

    I have Kaiser Permanente insurance. I have been transitioning back into athletic training after five years of letting my adult-onset T1D diagnosis disrupt my former athletic lifestyle. So naturally, I wanted to look into CGM as a way to keep tight control while I transition back into peak fitness.

    My inquiry was met with a response along the lines of: Kaiser doesn’t insure CGM because it has not been proven to improve patient outcomes.

    ((mind blown))

    Static readings vs. active trends = no brainer. But Kaiser clearly wants to save money not insuring CGM until absolutely forced to. Ugh.

    04/9/14; 2:52 pm
  12. I would compare somewhat the T1D Exchange to a modern day DCCT, because it’s following thousands of people with diabetes, some with CGMs and insulin pumps and some without, and hopefully soon there will be enough published data to show that these things obviously help with reducing costs by preventing hospitalizations and the like. I am very lucky in having an endo who loves that I get excited about new diabetes tech and want to use it (and also take an active role in my care – as a peds endo she doesn’t always see that), and that she will fight the insurance company if needed to get me the products to help control my diabetes better. I have also been lucky in that my insurance company has not been particularly stupid in regards to my CGM, they have covered it as long as my endo said it was medically necessary or whatever. It’s expensive, but the benefit to my health and safety is well worth it.

    I haven’t read the article yet, but it’ll probably make me mad.

    04/9/14; 5:13 pm
  13. Martha #

    The thrill of seeing someone fiddling with an insulin pump on the front page of the NYT was huge – this disease is so hidden and isolating and so few people, even friends and family, really “get it” that I’m all for the “look what I deal with!!” feeling it gave me, initially. However, some of the examples in the article seemed out-of-touch with the experience of my life with diabetes, and, as others have noted, kind of off-handedly wrong in the details. The idea that we don’t need to worry about complications anymore, well…umm…gosh, I hadn’t gotten that memo, and so all my calculations about how many years I might reasonably have left now that I’ve had this lovely disease almost 40 years, and will I be at my kids’ weddings, meet my grandchildren, etc….glad to hear I don’t need to give that any thought anymore. It’s The New York Times, for God’s sake. That’s a big one to get wrong, my friends!

    04/10/14; 1:22 pm
  14. Nicolep #

    I’m late in the game here BUT – here are a few things.

    Same quote pissed me off. Anyone who thinks we don’t worry about complications hasn’t counted the number of people I’ve lost to this disease already because of hidden – or more obvious – complications.

    I am confused by some reactions to this piece – I saw one blog post that implied the writer was saying people get pumps so they can eat peach cobbler. I thought the reporter was much more careful about portraying diabetes as something serious and the pump as a vital tool.

    Lastly, I liked a lot the way they showed all the supplies with costs. And then mentioned that it wasn’t even the full cost. Thought that was a genius way to show the expense of diabetes – to insurers and patients.

    04/30/14; 3:53 pm

Trackbacks & Pingbacks

  1. An Open Letter from @AskManny, @DiabetesHF to @NYTRosenthal, @NYTimes | Diabetes Hands Foundation
  2. New York Times on Costs of T1 Diabetes: Dissing Innovation? : DiabetesMine: the all things diabetes blog

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