What I Need/Want/Deserve

Laddie_Head SquareOn Sunday April 6 The New York Times published an article by Elisabeth Rosenthal titled Even Small Medical Advances Can Mean Big Jumps in Bills.  A friend without diabetes alerted me to the article and I read it along with the comments. For the most part I avoided social media for the rest of the weekend and had time to stew over my reactions to the article.

On one hand it was good to see Type 1 diabetes highlighted by the media.  Parts of the article were correct, but other parts made me feel uncomfortable and marginalized. I work hard to control my diabetes and I have been quick to give credit to my pump and CGMS for greatly improving my health and quality of life. I have no major complications and after my hospitalization at diagnosis in 1976, I have never been hospitalized except for childbirth. I thought that was a good thing.

Although I realize that my day-to-day medical expenses are high, I have been a “cheap” patient when it comes to acute care. Even my chronic care expenses do not surpass the total of my insurance premiums and my high deductible. Insurance companies are not making money on me, but they’re not losing their shirt either. That doesn’t mean that I could have gotten along equally well without insurance. My biggest financial benefit of having insurance is getting access to insurance-contracted rates. The insanity of our healthcare system is illustrated every time I see an EOB (Explanation of Benefits). Without insurance I would pay two or three times what my insurance pays for any procedure, lab test, or office visit. But that’s a topic for another day.

Most of you have already seen this excerpt from the article:

That captive audience of Type 1 diabetics has spawned lines of high-priced gadgets and disposable accouterments, borrowing business models from technology companies like Apple: Each pump and monitor requires the separate purchase of an array of items that are often brand and model specific.

A steady stream of new models and updates often offer dubious improvement: colored pumps; talking, bilingual meters; sensors reporting minute-by-minute sugar readouts.

 If you want to understand at my outrage/disappointment/fear at these comments and the whole article, please check out Kelly Kunik’s letter at her blog Diabetesaliciousness.  For some other well-thought out responses to this article, check out Amy’s post at Diabetes Mine and Bennet’s letter at Your Diabetes May Vary. Or just explore the DOC and you’ll find other great posts on this subject.

I have a few things to confess talk about here. Throughout most of my diabetes career, I have been considered a model patient who is compliant and all of those other adjectives that can be tossed about. One of my endos once told me that “You can get anything to work”. In a sense, I can and have. But the idea of going back to NPH and Regular or a once-a-day Lente injection is terrifying. I rarely make it through a night without at least two or three alarms from my Dexcom that my BG is too high or too low. I use my pump for multiple .25 or .375 corrections every day. That’s impossible with a pen and extremely difficult with a syringe.

But I could survive if I went back to syringes and vials. I don’t know whether I would have more complications than if I had never gone on the pump. I have had approximately the same A1c while pumping that I had with Lantus and Humalog injections, but my highs are not as high and my lows are not as low. I spend much more time in my “target range” and I feel much better. I believe that I am safer because my insulin delivery is more precise and predictable.

Although I have used various CGM devices for over 5 years, the Dexcom G4 has been the most life-changing. In the last year and a half with my G4, I have not once needed my husband to help me with a hypoglycemia episode. I have not wandered around a strange hotel room in the middle of the night desperately trying to find something to eat and then trying to figure out how to chew and swallow. I have hiked hundreds of miles without requiring a Glucagon injection. Bad golf scores have been the result of my bad golf swing and not the result of BG readings in the 30’s and 40’s. My only interaction with firemen/paramedics has been taking my grandchildren to see the firetrucks and ambulance.

Is a pump and/or CGM a luxury “gadget” for me?  The first night in July without my Dexcom when the transmitter died, I woke up with a BG reading of 37. But at least I woke up. If my pump is denied by insurance, will an uninsured T1 diabetic get access to insulin? If I had to choose between my pump and my iPhone, what would I choose? (My Pump.) Should children get access to artificial pancreas technology while senior citizens can’t get CGM coverage by Medicare? If I lived in a country such as the U.K. with national health insurance, would I even qualify for a pump or CGM? What would my current health status and the cost of my care be if I were still checking my urine to determine my BG control and taking only one injection of Lente per day as I did in 1976? Would I still be alive?

I don’t know.

These are important questions.  As I get closer to Medicare age and our country moves closer to universal healthcare, I realize that not every decision related to my diabetes care with be in my favor. No healthcare system will ever have enough money to give Cadillac care to every individual at every stage of life with any health issue and despite unknown return on investment for that care. Some of the toughest questions that must be addressed are:

  • How do we measure value?
  • At what point are increased costs not justifiable in comparison to increases in quality of life and health status?
  • Are these decisions death panels or a reasonable allocation of limited resources?
  • Is it short-sighted to limit access to pumps and CGMS and then willingly pay for dialysis and amputations?
  • How do we decide between keeping 16-week premature babies alive while denying tests strips to millions of people with Type 2 diabetes?
  • Should there be an age limit on joint replacements and organ transplants?
  • How can drug and device companies develop better technology and improved pharmaceuticals if these products are not reimbursable expenses?

Measuring ValueI think that each one of us could add multiple questions to that list. The patient profiled in the NYT article concludes that “You want me to be able to afford good treatment…Because otherwise I end up disabled.”

Does anyone care?

Scary times, my friends with Type 1 diabetes.

10 thoughts on “What I Need/Want/Deserve

  1. Pingback: New York Times on Costs of T1 Diabetes: Dissing Innovation? : DiabetesMine: the all things diabetes blog

  2. The is so much to love in this but this may be best:

    “with my G4, I have not once needed my husband to help me with a hypoglycemia episode. I have not wandered around a strange hotel room in the middle of the night desperately trying to find something to eat and then trying to figure out how to chew and swallow. I have hiked hundreds of miles without requiring a Glucagon injection. Bad golf scores have been the result of my bad golf swing and not the result of BG readings in the 30’s and 40’s.”

  3. Such a great and well written post with so many wonderful and valid points. Thank you so much for sharing your experiences and being a part of the Diabetes Online Community.
    We are lucky to have you!

  4. The more I think about it, the more I think it would be nice for each of us to have a small group of maybe 2 other dia-buddies in our local community to “help” each other out. So for example, when one of my buddies ran out of test strips and can’t get more for a while, I would give her some of mine to get her thru to her next refill. And vice versa. Creating a community of helping each other and taking care of each other, when possible. I have given test strips and insulin to friends when I’ve had extra and they were in need. It helps remove the worry of not having what you need, when you need it. I got this idea after reading about Ikaria, Greece, where groups of 5 people become friends for life and help take care of each other for life. I liked the idea.

    • Nikki, that is a wonderful thought and I think that many of us are always ready to help out our D-friends. At the same time, in the past year I shared some supplies with someone with the promise of restitution and never heard a word back or even a thank-you. But I would still share again. Do you have a link to the story about Ikaria, Greece?

      • Yes, i will find the article and send it to you. I think i found it on the Blue Zones FB page, but i’ll double check! It was very inspiring. I also just read an article today from the April 2013 Diabetes Forecast magazine (yes, im that behind in my reading) about the Pancreatically Challenged group of women in Detroit. They are a womens only type 1 support group that are proactive in supporing each other to manage their D. I love the idea of such a community!

  5. Laddie, I knew this would be a great reply to the NY Times article before I read it, coming from you. I plan to read the other blogs on the subject too. You brought up some very valid questions.

  6. What a great post Laddie! I couldn’t agree with you more. I’m definitely not causing my insurance company to lose any money on me. They might not be making as much as they could on other people, but they aren’t losing money on me. I also like to think that because I go to the doctor so regularly, I’m healthier than most people probably are so I will cost them less in the long run. I also completely agree with your comment about the biggest benefit being getting the insurance-contracted rates. I was on COBRA for a while, not getting the insurance-contracted rates and it was ridiculous how much more a person pays when they don’t have the insurance rates! Thanks for sharing 🙂

  7. I was also interested in another theme in the article: indignation about the monopolistic and anti-competitive practices of companies that sell supplies to diabetics. As I have little faith in regulation, I hope that technology and disruptive internet start-ups get interested in this and help begin driving costs seriously lower.

  8. You’re absolutely right, Old Lady in Philadelphia. Already Walmart has a generic line of blood glucose meters and strips that are a fraction of the cost of name-brand products and seem to have similar accuracy. Unfortunately it’s hard to imagine that happening with pumps and other devices because the costs of developing a product, testing it, and having it approved by the FDA are prohibitively huge. It is incredibly frustrating to live in the USA with the “best healthcare system” (yeah, right?!) and see that we are subsidizing the rest of the world with the high drug and device prices we pay.

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