Terrible First Page Article in the Sunday NY Times

Sugar Bertie: Type 1s actually make up about 20% of the total diabetic population. LADAs are about 10% of those diagnosed with "Type 2" but LADAs are slowly progressive Type 1 diabetes.

The basic premise of the article, that costs for a chronic illness like Type 1 diabetes are out-of-control, is correct. But what about present-day costs (modern technology with better control) versus historic costs with extreme costs for complication treatment?

Me, I am a huge fan of the new technology. When I was diagnosed, I started on the available insulins at the time, R and NPH. NPH was just hell, it wasn't very long acting and the peak caused a lot of nighttime lows for me. R also caused a lot of lows because of the trailing end. I really appreciated Humalog when it came out, and I went on a pump in 1998, and for me the pump really helped to eliminate nighttime lows. The Dexcom CGM I love and it has further eliminated lows especially in my problem area of exercise.

I know it is costly to use this technology, but truly it has made my life better. I am fortunate in that I have good insurance. Remember, the alternative is the extreme cost of complications.

This is pretty much why I dislike this article though as I mentioned earlier. While some people can cope with the low tech and/or old insulin regimen , I don't think I could. The older insulins seem so inadequate when it comes to the peaks and having to constantly eat and plan a lot more out of your day than novolog/humalog/apidra and Lantus/levemir require to deal with. It all makes me glad I'm a new diabetic in the 2010's instead of earlier in my life where I'd possibly have some issues due to the insulin. I do at the very least love Novolog, and don't wanna trade it for anything else unless I have to.

Jury's still out on high tech for me though but we'll see when I start the pump in 2 weeks how that goes with time. I do feel trapped in the 90's because it's a medtronic one and it's not as pretty and fancy looking as the Animas ping or Tandem Tslim but I imagine if I'm right on this, it'll offer me improvements that I need (mostly involving insulin sensitivity) .

Like we could do cheaper things and cope with it, but why? Even though there are cheaper options when it comes to diabetes, they're all very hit and miss and it depends on the person with diabetes themselves.

UK wise it works out at about 18% of D's are T1's, but including the estimated number of undiagnosed T2's it drops the T1 population down to 11%. Which means D's as total account for about 7% of the population which is pretty worrying really. Either way, we need to make more nose and not be ignored!

Before I did MDI with N and R, I did 2 shots a day of N and R. That didn't work so good for me.

The MDI routine with N and R was 4 shots a day. My basal was done with N, 20 units a day, spread between 4 shots 6 hours apart. And before each meal there was R. Shots were typically an hour before the meal. So typically 6AM, 12noon, 6PM, and before I went to bed (actually sometimes a few hours before midnight).

No, there was not as much flexibility as with Humalog + Lantus.

My average A1C with N+R, 5.7, was actually a little better than I've done yet with Humalog + Lantus. But I did have more hypo problems with N+R.

Insulin prices in the US are NOT the real or even the economic price. IN the UK, where the the government is essentially a monopoly purchaser and has a lot more negotiating leverage over the drug companies (providers) for a 10 ml vial of any of the fast acting analogs (Apidra, Novorapid, Humalog), the NHS pays £20 (US$32). For Lantus the NHS pays £42 ($70) for a pack of 5 disposable pens.

Other European countries, with insurance-based healthcare systems but run by the government and not a collection or private insurance companies pay similar prices to the UK for insulin. Rather than blame the drug companies, blame the healthcare system.

I truly believe that the whole perception of how to deal with diabetes as a chronic disease is hopelessly fouled up. Our entire health system with private and public "insurance" programs are all oriented towards dealing with acute illness. They are payer programs, they are not insurance. They actually encourage higher costs since added payouts simply mean higher revenue. And as a result they are extremely wasteful and inefficient when dealing with chronic illness. We deal with this every day, high insulin cost, high pump costs and totally outrageous billings for health services (note the billing of $100K by a hospital for a drug that cost $1200). And in the same manner, turning over innovation and supply of necessary products to what are essentially pharmaceutical monopolies also guarantees higher costs, slower innovation and products that maximize revenue rather than really solving patient needs. What is really sad is that the NYTimes and other public voices fail to recognize the real problems.

Melitta, I agree with you. the article is short sided in comparing only immediate costs and ignoring Long Term Costs. My aunt was type 1 at age 8 and passed at age 11. Mom was type 1 at 24 and passed at 48 with so many complications it took a monumental effort to keep her going. I have been type 1 for 39 years and have some complications but nothing serious.

I suggest that if one took her case, and compared life span, cost of being kept alive int he last 10 years of her life and productivity there woudl be no comparison, today's technology and insulin's are better.

Now the premise of her article is fine. The cost of test strips is outrageous , marginal improvements in pumps at big costs are obscene. unfortunately she used faulty and short term only perspective to make a valid point. I just wish she had been more accurate. Much more accurate.

Brian as for the Remicaide treatment my last one which was 5 years ago cost less than $5,000.00 and was done in my house. If this guy did what I think he did, namely follow the doctor and never check competing prices (there are infusion centers everywhere these days) he would not have rang up a bill of $100,000. That means he went to a hospital used a regular room or an outpatient room and used all the hospital amenities.

No offense but that is just idiotic, and it is not the drug companies fault, nor really the hospitals. It is the fault of insurance for allowing it to happen and a patient who did not think his way through an easy thing to figure out.

The U.S. seems to be the only country where a vial of insulin is well over a hundred dollars.

Remember when I first went onto Lantus. The pharmacist in Boots almost had a stroke at the cost of the stuff. Although back than he said it was coming in at £70 a vile. Not sure if it's come down in price, can but hope. Either way considering how it's brewed in big toilets it's not exactly expensive to make once they get going.

I actually thought the feeling of the article in the NYTimes was pretty good on that it had a go at the companies all trying to lock in customers (patients) and bleed anyone be it an insurance company, state funded or self funder dry of cash simply because they can.

The fix is one which wouldn't go down well either though. You either have governmental intervention which in certain parts of the world be seen as against free will and something the commies would do even if it is remotely socialist by taking livelihoods off over paid shareholders. You could have government bodies actually develop and manufacturer state produced devices.

My personal fave solution though is based off a similar principle to FOSS. The community designs a device, develops the software, and makes it totally open to run with as many other things as possible so anyone, anywhere can lend a hand and submit improvements.

You are probably wondering at this point that it breaks all rules on medical testing. Well it's a reference design produced by the community. Members of that community could if they so wished build one off that design and use it FOR DEVELOPMENT themselves, but as a reference design any company could pick it up, and make it as well. They haven't had to pay for any design, development or anything else. There only costs are manufacturing and medical certification testing. In theory over time If I want a pump I can see a day I just go ebay and spend $50 for one which runs the community software I want with the adaptation to fit my viles/batteries/sensors I also want. Would really upset the medical companies >:D

After reading the comments from Kevin & Maurie and thinking about it, I have to update my statements. I do think that the article in general was definitely more helpful that hurtful. It exposed some of the high costs that we're all already aware of, and really spoke to the state of medical costs.

So, even though there are some inaccuracies or statements that I do not necessarily agree with, on the whole I'll rate the article as positive.

I am glad to see this reply, trauts! The article was not written to define, educate, or discuss type or treatment. The title was Even Small Medical Advances Can Mean Big Jumps in Bills, and the gist was well met imo.

The current treatment and costs associated are indeed "big business" and our own rising expectations makes it even "bigger". The past is the past (and it sucked but was doable). I am from the old school - mixing R and NPH, testing with a color chart, blah blah blah. Today is way better for sure, but way more expensive. Some folks even expect bright colors on our pumps. I remember the day when all the pump did was deliver insulin, now they are designed to tell me how much I need even. I hope mine will play my workout music some day.

I agree with this bit from Dr. Joel Zonszein, director of the Clinical Diabetes Center at Montefiore Medical Center.: "People don’t need a meter that talks to them. There’s an incredible waste of money."

There were plenty of facts in that article. And we should forgive the inaccuracies. We read plenty of those every day right here ;)

But there are also the large numbers in the UK of misdiagnosed Type 1s (it's been in the news lately). Type 1s misdiagnosed as Type 2. So what is the real percentage? Hard to say.

People don’t need a meter that talks to them. There’s an incredible waste of money.



Actually talking meters were a pretty big deal in the early 80’s, but today the fraction of blind or going-blind T1’s is much smaller. Still not zero. But the main reason the fraction of blind or going-blind T1’s is much smaller, is the meter!


When we point out the corner-case exceptions to the broad truths in that article, I feel like we're the nerds they make fun of on the Simpsons:

In episode 2F09 when Itchy plays Scratchy's skeleton like a xylophone, he strikes the same rib twice in succession, yet he produces two clearly different tones. I mean, what are we to believe, that this is some sort of a magic xylophone or something? Boy, I really hope somebody got fired for that blunder.

I've held off responding to this Times article so I could let my take on this come into focus. The overriding theme of this article is that we, as a society, are paying too much for some segments of our health care, like diabetes. That raises my hackles, for sure, and was why I slept on this before I made any substantive comment.

I've been buying insulin since 1984 and transitioned from animal R and NPH to Humilin, a biosynthetic human identical insulin. From there I moved to Humalog and the other rapid acting modern insulins. While I had insurance coverage this whole time I did notice that the cost of insulin had skyrocketed. I wrote that off, in the beginning, as modern business recovering their investment in developing these new insulin formulations.

From the time of my diagnosis until now, I have benefitted from the improvements of the insulin. My control not only got better but I suffered less from hypoglycemia and had more energy.

Just during the last few months I became aware from commenters on this board that the same modern insulin that I spent over $200/vial was available in Canada for about $30/vial. When I commented that the Canadian health system must be subsidizing that cost, the Canadian members here pushed back hard and said there was absolutely no subsidy of this insulin. They said that the Canadian health care plan specified the sale price limit to the insulin producers and the producers could choose whether they want to enter the market or not. They concluded that the producers must be able to make a profit at $30/vial or they rationally wouldn't enter the market. That seemed persuasive to me.

But then I got to thinking about the enactment of the Medicare Modernization Act of 2003 (aka as Medicare Part D) in the US. This Act specifically prohibited Medicare from using their inherent market power as a huge buyer from bargaining with drug manufacturers to reduce costs. This, in my humble opinion, is the driver of today's runaway drug costs. The Medicare Modernization Act was a deliberate interference in the natural forces of the market to the benefit of Big Pharma. I call it corporate welfare!

The Veteran's Administration (VA) in the US did not make this same choice. They buy drugs in bulk and pass huge savings along to the ultimate consumers. The government and Big Pharma knew exactly what they were doing with Medicare part D since they had a long history with the VA. We, in the US, got fleeced!

Now, I realize that companies that invest millions in new technology need to recoup the costs of their investments but it appears that only US residents are funding that. I don't know, but perhaps it can be said, that the US is subsidizing the rest of the developed industrialized world when it comes to financing new drugs. All I really know is that we neutered the potent market forces that a large buyer in any market exerts when they go out to make purchases. This is antithetical to the perceived traditional conservative politics!

Diabetes should not cost so much but the fault does not lie with PWDs and their doctors. I assert that the fault lies with deliberate market interference as typified by the Medicare Modernization Act of 2003. I further assert that using market middlemen, the US insurance industry, parasitically drains valuable health care dollars and in return provides no benefit.

My fix, if I were king? I would institute a complete replacement of our health care system with a single payer universal Medicare-for-all and completely eliminate the insurance middlemen. It would be a public payer with private providers. I'm not holding my breath!

The reason I don't think the article is a net positive is that it is no surprise that relatively small medical advances can mean a big jump in bills. Cancer treatments that extend life by 90 days can cost hundreds of thousands of dollars. These things have been reported for years.

The question is whether incremental changes are always small changes. We don't need pumps with pretty colors and I don't want one that plays music but I don't think the changes since the 1980s are particularly small and I am not convinced by Tim's argument that meters and MDI are the only important advances. A1c's are in general lower than they were for the intensive group in the DCCT. Perhaps that is a result of analog insulins, pumps and even CGMs for at least some populations.

The downside of arguments like this is that they encourage the general tax paying population to tell the chronically ill - especially the poor - to suck it up and stop complaining about inferior care.

Maurie

Do you test two hours after those meals, Bertie? I don't know how old you are (your profile says you were diagnosed in 1900!) but you might want to watch at some point for weight gain and developing insulin resistance from using high doses to cover high carb meals. Personally, insulin deficiency is enough for me without adding insulin resistance. I don't think pump trainers who tell us we can "eat whatever we want and bolus for it" are doing us any favors. I personally think your type 2 friend may be jealous but he will certainly be healthier! I'm going to get in trouble with admin if I comment on the "some other sucker is paying for this luxury".

Oops, sorry, Bertie, the tongue must have been too well hidden in your cyber cheek!

That's got to be frustrated to watch. I had a friend who is an RN and whose medical opinion I'd always respected. Her husband is a Type 2 who "follows doctor's orders" (which are very minimal treatment) and they both think I'm obsessive about my D.