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I'm Sure All Patient Concerns Are Absurd

© 2013 Scott Strange, Strangely Diabetic and

**Warning: This contains controversial statements and comments of unusual sarcasm.

I recently attended the Diabetes Mine Innovations Summit as a scholarship winner of the The DiabetesMine™ Patient Voices Contest. You can see my entry video here. This is an event “designed to spark interactions and discussions that lead to faster, better development and design, and improved access to innovations that will improve life with diabetes. That was a long-winded way of saying: it’s all about new and better ways to improve life with diabetes.”

At this event, there was also a panel of insurance representatives, a Payer Panel. I felt the payers were being very candid about how things work, that they are a business and they are out to make money. There is nothing wrong with that and I’m grateful that I do have insurance because I probably couldn’t afford to stay alive otherwise.

They described how they worked to improve their balance sheet and mentioned that they avoided new technology for as long as possible (A little ironic given that there was a large amount of new tech being discussed there that day) to keep costs down.  Karmel Allison, over at A Sweet Life, describes the payer perspective quite well and is different than the one I’m going to describe.

But I don’t think the panel quite understood the audience they were addressing. It seemed as if they had never really seen, in their own lives, what these “cost saving” methods really translate to at a patient level. People with chronic health conditions already have complicated lives and it is a pretty universal sentiment that health insurance companies often require us and our medical team to jump through hoops to get authorization for what we need. Those hoops take time and energy. Our HCPs could use that time to treat more patients with time of a higher quality.  We patients could use it to actually care for ourselves or loved ones and maybe even use some to have a better quality of life.

For those of you who don’t understand and might have been actually embarrassed by the reactions of the Type 1, Type 2 and Type 3 (caregivers) diabetics present, please read on because the way things are supposed to work isn’t always how they actually work.

Insurance companies gambled, and still do, that I would be on someone else’s plan when complications set in. Hopefully, the government’s. All in the name of cost containment. Driving costs up over the long-term because there was no focus on prevention of complications. Prevention is not profitable in the short-term. Only in the long-term and that is someone else’s problem.  Will the exchanges solve this, since in theory, patients could stay with a single insurer? We’ll have to see, it might but the thought that comes to mind is that competition between payers could still enable that behavior. Here’s how they saved money on me…

HMO’s knew more than I about how much insulin I needed

It was perfectly legal for them to only give you 27 days of medication per month.  My 2 vials of insulin were good for 27.6 according to my HMOs math and that was close enough that I didn’t need that 3rd vial of insulin.

You had to get every single unit from a 1000 unit vial (impossible)

You could only use the exact amount of insulin that your doctor prescribed (also impossible)

Prescriptions for insulin that read “Take as needed, up to 100 units a day” were denied

Prescriptions for insulin that read “Take 20u with meals plus more as needed up to 100u/day” were denied

Writing a script for 30u/meal resulted in a request for documentation for the sudden 50% dosage increase.

My doctor tried all these and finally had to stop trying since he received a warning letter that his practice was under review.

As a result, I could have 27.6 days of insulin a month.  If I could get all 1000u from a vial.  If I never, ever needed an extra drop. Luckily, my doc came up with an extra ‘sample’ vial every couple of months for me.

A recent incarnation of this type of thinking is the Pharmacy Benefit Manager (PBM).

Currently, these PBMs like to limit which medications you can get coverage for. For most people, that defines which medications they must take as that’s all they can afford.  There is no advice from your doctor on this. None from you. It seems the medication “chosen” is the lowest cost to the insurance plan, not necessarily what is best for that patient.

How long it will be before they also decide how much you can take?

You know, I never did figure out how to turn 27.6 into 30… well, I did… changed jobs and got off the HMO nightmare train. However, I fear that the option of getting off that train may soon disappear.

Oh, by the way… 2 days without insulin is usually fatal for a Type 1 diabetic…

HMOs and Mental Health

The link below describes how HMO’s also played a huge role in the decline of mental health services in this country. In the words of the author, Dr Keith Ablow, “In the realm of  psychiatry, medical insurers have literally been getting away with murder.” I guess that fits in perfectly with the largest provider of mental health services in the country being the criminal justice system.

How psychiatry killed Austin ‘Gus’ Deeds

Automatic Denials

Recently, at the Diabetes Mine 2013 Innovations Summit, Dr. Charles Stemple, Senior Medical Director at Humana, said that he wouldn’t be associated with any organization who had a policy to simply deny claims.

Doctor, honestly, the first thought that went through my head when you said that was “When the hell did that change?”. As much as I believe your sentiment, automatic denials are alive and well, thank you very much.

I am Type 1 diabetic. This is an auto-immune condition that requires daily insulin infusions to survive. I also have hypoglycemic unawareness, which means that I no long can “feel” that my blood sugar is low, sometimes dangerously so.

There is a device available, a continuous glucose monitoring system (CGMS) that can monitor glucose levels every 5 minutes and alarm when they get too low or too high. This device is also very useful for monitoring your glucose patterns during the course of a day. This knowledge is invaluable when “tuning” an insulin pump so it works best for an individual.

Many endocrinologists can attach this type of device to a patient and have them wear it for a week, allowing the doctor and patient to use this data to tune their pump patterns. My doctor provided such a service and as a Type 1, it should have been approved. My insurance had that information, they knew I was a Type 1 diabetic.  The claim was denied. I appealed and denied again as being experimental for a Type 2. The denial explanation included all the evidence in the world that it was not experimental if only I had been a Type 1. A letter from the doctor and a second appeal resulted in approval.

I then ordered a CGMS for myself. Insurance denied. Speaking to a nurse at insurance company about why the claim was denied, She told me that “had never seen one approved”.  Yea, that certainly  sounds like an honest evaluation of whether the device was appropriate for me or not, doesn’t it? Certainly that couldn’t possibly be an automatic denial.

So I appealed and sent back evidence they had provided me for the in-office claim, all that documentation that it was not experimental if I was a Type 1.

And I was denied a second time because, once again, they seem to have assumed I was a Type 2 or maybe conveniently forgotten I was a Type 1.  Even though they already had the Type 1 letter. Wow, that certainly doesn’t sound like an automatic denial.  I had to resend the doctor’s letter stating that I was a Type 1.

Two appeals to simply resend information the insurance company already had. Talk about jumping through hoops and extra cost.

I believe they finally had to approve it because they had simply backed themselves into a corner and really had no other option.

Many people receive denial notices and don’t believe there is anything they can do so they do not appeal, I believe insurance companies bank on this.

The true problem with healthcare

Also during the panel, an endocrinologist complained about all the hoops she had to jump through to get patients the treatment they needed. Another clinician remarked that she couldn’t get reimbursed for things necessary to truly support her diabetic patients.

Dr. James Dudl, Diabetes Lead & Community Benefits for Kaiser Permanente, said that it would make more sense if you had the ‘easy’ kind of diabetes… well… beyond the usual ‘Really? Seriously? Easy? There’s no such thing as easy diabetes.’ response, that statement is actually quite profound because it describes the true problem with the American healthcare system.

A problem that is so obvious once you look for it but can’t usually be seen because there is so much confusion about costs, costs that seem to keep climbing while reimbursements keep falling. That doesn’t make sense to most people, myself included.

Our insurance reimbursement model simply isn’t able to handle complex chronic cases. Chronic cases that are rapidly increasing in number.

It isn’t that our doctors don’t want to help us, they do. But in a world of reduced reimbursement and increasing chronic caseload they simply cannot afford to properly treat us and still feed their families.

Things like help in finding other support resources and then actually be able get coverage. Things like treating us as a person and not simply an ICD code. Chronic patients need psychosocial support, support that is currently unavailable as a “normal” component of our care. These are the types of things that we need to truly thrive, to live a life not dominated by getting care for our condition. Notice I said “getting care” not “caring for”, they’re two different things.  This situation probably applies to any number of chronic conditions.

Situations like these are why insurance has such an uphill battle to face when trying to garner trust from patients and providers. They simply haven’t helped us get, without a battle, the extras we need. And they’ve had no interest in doing so.

With the PPACA, insurance companies will be trying to find out what an open marketplace is.  But how open is it? I suspect that we will see the most of employer offered health insurance plans go away.  When only individuals are shopping for plans, will insurance companies have enough incentive to offer a variety of plans?

Also within the PPACA is the idea of outcomes-based reimbursement. The better the outcome for a patient, the better the reimbursement. Patients, providers, facilities are all held accountable.


Everyone Except The Payers

Payers who can, and do, interfere with  treatment plans by what they will and will not cover. It does little good for someone engaged and working with their provider to develop a plan that works if they can’t afford to execute it. They can’t afford it because insurance won’t provide coverage and out-of-pocket is simply not an option.

In effect, insurance companies do make medical decisions, whether you want to admit it or not.

For most people, those who have ‘health-privilege’ (HT Dr Ann Becker-Shutte), you know the occasional broken arm or case of the flu, an HMO-type policy makes sense. For those of us with chronic conditions, HMO plans add a lot of chaos to our already chaotic life and make getting the treatments we need more difficult.

The model for the care of chronic conditions is broken. Simply broken. And that model is largely defined by what will and will not be covered by insurance. On top of that, chronic care is using a larger and larger portion of our health resources every year.

I worry that, at some point in the near future, we, as individuals, will see only HMO-type plans available, with very limited networks of providers. I’m sure that, for those who can afford it, there will be better options available. But for Joe Mainstreet, these type of plans may be the only affordable options. Plans that sharply limit doctors, facilities, treatments and medications.  The same approach that said I only needed 27 days of insulin a month.

For those of you who didn’t understand and felt embarrassed by the patient advocate reactions to the payers panel at the Diabetes Mine Summit, do you see now why we feel the way we do? Some of those practices are simply predatory. But what do I know? I’m just a guy with a blog… and a humble yet correct opinion.

For those who say these types of things can’t happen anymore because of some law or regulation, you should instead ask how will they get around it? Where is the loophole? There will be one and it will be exploited. How do I know? Because there is money, and lots of it, involved. People want to assume that everyone will do the right thing. And they will. In this case, for a payer, the right thing is to reduce payments to make more money.

Remember how a lot of those “grandfathered” policies were cancelled? That wasn’t supposed to happen, but it did. And even though the law was “changed”, allowing those plans to remain, some places such as California are saying “No, those plans are GONE.”

Oh hell, I’m probably just full of it and I’m sure that Dr Richard Feifer, National Medical Director for National Accounts at Aetna, was totally correct when he told a room full of Diabetes Patient Advocates that our concerns and frustrations were “just a little absurd.”

** as a Patient Voices Scholarship winner, I was provided funds for travel expenses. I was not asked to blog or not blog about this event

© 2013 Scott Strange, Strangely Diabetic and

  • I so wish some of these organizations had folks living with diabetes in their upper management. And you’re right, they gamble we’ll be on Medicare before problems start — it pisses me off.

    • It absolutely pisses me off too, Bernard. I wonder if any upper management were to suggest such a strategy if they’d get ridden out of the boardroom on a rail?

  • Leann Harris

    Ha. Try working at an insurance company and *not* being upper management. The way some of my co workers referred to “those diabetics”… well, I don’t have to explain it to this group. I think I “came out” more there just to show that they need to not think a degree gives them a right to disrespect others.

    I’ll be honest, unless it’s cancer or multiple conditions, it’s hard to get their attention. Diabetes gets such little attention. The entire mindset is like when you go to your doctor who lectures you about “compliance” and is judging you based on your lab values. While I get that they feel as though they are “taking care of someone” by attempting to get their lab values all in the normal range, they don’t get how the way they’re going about it *doesn’t actually help anyone accomplish anything*.
    I feel better now. Sorry for the rant…

    • Hi Leeann,

      It’s not a rant without at least 4 separate curse words (extra points for using multiple languages).

      I think it’s awesome you came *out*, it must have been terrible hearing co-workers talk, basically, about you like that. It seems them might be too ‘distant’ from the actual people they are ‘taking care of’

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  • Rickst29

    Many CGMS appeals can be resolved, in favor of the Pt., by the Pt directly threating the decision maker’s future career with comments along the following lines: “If you again deny coverage for this FDA-approved medical device, please have your “qualified” decision maker describe exactly why the FDA was wrong to approve it for treatment of my condition, and provide all of the relevant documentation which he/she has used to deny this medically necessary coverage. Note in advance that any claims which are based on my history of HgA1c readings are irrelevant, because my glycemic variability problems are totally ignored by that primitive test.
    “If this coverage is again denied, provide me with the full name, Medical License number and State of Licensure for the responsible decision maker, because such denial indicates that he/she is likely practicing Medicine outside the scope of his/her competence. A Medical Board investigation, possibly resulting in remedial action, would be appropriate in that case. Sincerely yours, xxx xxxx

    • Rickst29

      If “they” threaten your health and life by refusing medically necessary treatment (in order to make more profits), my recommendation is to avoid merely begging them a second time. An indefensible “wrong” position, taken against your Appeal, needs to be understood as significant threat to the career of the decision maker, and to the reputation of the insurance provider as a whole. Do not go “quietly into the night” following Denial or failed level-1 Appeal. You have the right to defend yourself from medical incompetence and/or abuse. Remind them of that fact in your appeal letter, by questioning the competence of anyone who would dare to deny you again.

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  • Scott S

    I think the inclusion of payers was groundbreaking in some respects, but your observations about healthcare in the U.S. seem pretty accurate from my perspective. Back in November 2008, I blogged (see my post at for more background) how a study undertaken by the Commonwealth Fund, a foundation that has pioneered in international comparisons, showed chronically-ill Americans (e.g. those who suffer from at least 1 of 7 key chronic conditions: including hypertension, heart disease [including heart attack], diabetes, arthritis, lung problems [including asthma and emphysema], depression and cancer) suffer far worse care than our counterparts in seven other industrialized nations (the other countries examined include Canada, Australia, New Zealand, the United Kingdom, the Netherlands, France and Germany).

    The reality is that chronic care is costly and no one wants to pay for it, but the cost of NOT caring for it is usually more expensive. Some other countries do a superior job than we do, but there is also variability by state, with some states having more regulations than others (while libertarian views are acceptable, in the case of healthcare, some laws must govern or you end up with a case where only the wealthy have access to care, with the healthcare outcomes associated with that model).

    In the end, the medical profession has turned increasing number of illnesses from being acute illnesses (the ailments kill people quickly) to chronic ones (they live much longer but aren’t cured) … we can look at diseases like HIV/AIDS for fairly recent examples …. but the system is still configured around an acute healthcare model. That’s a policy issue, but its one there’s lots of talk about but little action from policymakers on.

  • Don

    This all illustrates why a capitalistic, profit-driven system doesn’t delivery health care in a rational way. The ACA exchanges make the plans a bit more transparent and easier to compare and the industry absolutely should be regulated. Ideally, a universal charter will someday spell out how to treat PWD’s that insurance companies are mandated to follow. I suppose every year a little “ding” goes off in the head of an upper management type who suddenly gets it when they or a loved one is dx’d with T1.

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