We need a Diabetes Bill of Rights

Yeah, I'm sure this comes up all the time, but there are just certain things we need that insurance (and medicare for that matter) should cover automatically.

I finally got a doctor to prescribe enough test strips to make it worthwhile for me to use my insurance (instead of just buying generics online out of pocket), and apparently the insurance company requires reauthorization each month they are filled. I'm a type 1 diabetic, it isn't changing and my needs for test strips are not going to change for at least the next decade. So to start put me down for...

1. Every diabetic (at least with insurance) should be entitled to 10+ test strips a day. They can be generic/off brand, but we should have access to a reasonable number of test strips to maintain good control.

2. Once we get a prescription for test strips, insulin, supplies, etc, we shouldn't have to get a new one for a reasonable amount of time. Once I've been put on a CGMS, do I really need a new prescription to order my sensors?

3. Every diabetic should have some access to a CGMS even if it is only for a few weeks a year.

4. Patents for insulin manufacturing/production should be lost after the insulin has been on the market for x number of years.

Scott - I agree with your proposals. In fact, I would propose that every diabetic, no matter the flavor, be allowed to use all the test strips they request provided they can regularly prove that they actually use them. Studies have shown that the more tests, the better. There should also be supporting education that helps the diabetic to use the data and actually make treatment decisions based in the fingersticks.

I agree that having to renew a Rx every month is needless and wasteful. I can submit one Rx/year and that seems better, but I would also support a longer period. Diabetes is not going to be cured any time soon.

Every diabetic should have access to a CGMS system. It has value in real time and also using retrospective analysis using download software. At a minimum, it provides a compelling picture of what various foods and meals do to our BGs. It’s the difference between video and a snapshot.

All of our patents (US), especially drug/pharma, provide too much protection for the corporations, at the expense of the patient and government payors like Medicare.

I sometimes think that the “radical” activism of the HIV/AIDS community is exactly what we need to support diabetes. Diabetes affects far more people and does a lot mre human and economic damage than most other diseases. We’re not getting our fair share of resources!

First and foremost, I think people with diabetes deserve a correct diagnosis and treatment. If a person has a fasting BG above 125 mg/dl, a diagnosis of "diabetes" should be given, followed by investigation and testing into what type of diabetes the person has, where on the scale is the person's endogenous insulin production, etc. Most adults with new-onset Type 1 diabetes are misdiagnosed as having Type 2, and virtually all people with new-onset monogenic diabetes are misdiagnosed.

After a correct diagnosis, I agree with Scott's and Terry's proposals!

Renewing scripts monthly is abusive. Can't see any reason for that at all.

However, 12 months is pretty standard for medications that treat chronic, long-term conditions for one very good reason: It requires you see your doctor at least annually for the underlying condition. This is a win-win for both parties: The patient isn't running rogue and having a change in their condition go undetected that could cause serious harm.

For the doctor, it is simply basic reality that they can't be responsible for treatment outcomes if they don't have a reasonable opportunity to continue monitoring the patient and tracking their disease.

For diabetes, 12 months without seeing the doc is really way too long anyway. Most diabetics are seen quarterly for this reason. Experienced patients with good control and stable treatment protocol are bumped to 6 month intervals sometimes, but that once of the countless downsides to this condition is it requires a far more active relationship with a physician, and the associated cost, etc.

Melitta, I had meant to put that one down. After I got the T2 diagnosis, it was 3 years before they got it correct and only because I switched endos to get one to do the testing.

Also, I'd use lower A1C criteria to label people diabetic/pre-diabetic, triggering additional testing. I'm in the LADA T1 camp, and I might not have had a fasting BG above 125 until 4-5 years ago, but I had diabetes symptoms long before that (10+ years ago) and probably would have tested positive for the antibodies years ago.

"All of our patents (US), especially drug/pharma, provide too much protection for the corporations, at the expense of the patient and government payors like Medicare."

When I take a look at the financials for the pharmaceutical industry, I don't see outrageous profit margins, people being made multibillionares, etc. So I'm skeptical about this complaint.

Patents, and the prices they support, provide the return necessary to make new treatments even possible. It costs gobs of money up front in R&D, drug trials, etc. to get a new drug to market. The cost of a vial of insulin is not just the cost to manufacture it (super cheap)... It necessarily must include the development costs amortized over the expected profitable life of the drug. Otherwise, the research can't happen -- researchers don't work for free.

The irony of your proposal is that it would in all liklihood result in higher drug prices. For example, Lilly prices Humalog to recover development costs over the 17 year life of the patent, after which they lose the ability to charge a premium to recoup those costs. Cut the patent period in half, and the drug price will nearly double (most of the price is amortized development costs) until the patent runs out.

Because US citizens are -- against our will -- subsidizing the rest of the world for this research, everywhere else there would be no change in price due to price controls. We in the US would bear all this compressed cost.

I'd suggest quite the opposite -- create a new patent category for pharmaceuticals that's 30 years instead of 17. It would carry the restriction that, to take advantage of this extended patent financials for that medication would have to be public, profit limited to 10%, dev costs required to be evenly spread over the 30 year life of the patent. Then, a pharm could decide if they want to gamble the drug would still be viable as an exclusive or not.

Some are decades later, others get superceded by better drugs. But this happens in the 17-year window too.

I agree with your fundamental concept, but think the protocol and metrics for how diabetes is diagnosed need to be changed. This is, in my opinion (worth what you pay for it :-)) is that postprandial BG is a far better indicator of impaired glucose metabolism.

It's not uncommon for someone to have what really is diabetes (i.e. their risk of all the various complications is significantly higher than a non-diabetic), to have a FBG < 120 mg/dl, while going well above 140 1 hour after eating, and still be over that threshold 2 hours, 3 hours later or even longer.

Diabetes should be determined by one's response to ingested carbs, not by one's ability to drive BG below some threshold while fasting. The latter gives no insight into how long this "tail" was getting back down there, and that's the truly important metric.

So, Dave's protocol, which is extremely narrow in the minds of many: Have a glucose tolerance test after 14 hours of fasting. If PBG is >140 2 hours after, your diabetic.