I Have Great News About My Diabetes!
But it’s a dubious pronouncement.
I received some great news yesterday!
I no longer have diabetes!
Or, maybe I never had it and it’s all been a colossal mistake by multiple doctors using proven diagnosis tools such as blood tests, continuous glucose monitors, and consistent symptoms. You know, data which has informed doctors I indeed have diabetes and have needed treatment for it for the last eight years.
In fact, in 2015, my fasting glucose level was 181, far above the 126 doctors use as a cutoff for the diagnosis. But it seems we can ignore that now and also discount the fact I had gestational diabetes through four pregnancies, an indicator of what is likely to happen later in life [Your Risk of Type 2 Diabetes After Gestational Diabetes (verywellhealth.com)]. Not to mention, my dad, maternal grandfather, and at least two siblings are all diabetic. None of that matters, though, because I’ve received this great news!
How did I hear this? The drug insurance company that administers my prescriptions has decided I don’t have diabetes.
Yes, that’s right! This entity who doesn’t consult my doctor before they level this new information has declared me cured!
Insurance companies and drug administrators are the best “healers” to come along since Jesus. They decide I don’t need certain medications or I no longer have chronic conditions that have been deemed “incurable.”
It doesn’t matter what my doctors say I need or don’t need because these other groups who have never seen me but who do have access to prior prescribing history, decide what is and what is not (often not) medically necessary. It’s a great system!
Maybe the cost influences what insurance companies will or won’t cover for consumers. Which affects the whole industry, not just people with insurance.
Just the day before, I read a blog post about how much the cost of insulin has gone up and how people with lower incomes (not “low-income” who may get some help from Medicaid) cannot afford the sticker shock of $1200 per month for their medication. And, of course, they cannot really afford insurance, either. I suppose drug companies decided that only people with higher incomes are diabetic and need medication.
What are doctors for anyway?
This presents a problem: I trust my doctors to know what particular symptoms, test results, and case histories indicate. That’s why I go to them. I strongly suspect they have more information than I do, plus they have access to prescription privileges.
At least they once did.
More and more it seems they do not have prescribing privileges given the fact they write or upload a prescription, I go to the pharmacy, and then the drug insurance wants a prior authorization. What is a prescription from a licensed doctor other than a prior authorization?? Do they think I had my kid’s schoolteacher write the prescription?
After they get the “prior authorization,” the insurance company/pharmacy/alien emperor decides if I need the medication or not. Or, in my most recent case, whether or not I really have the condition I’ve been diagnosed with.
Do these powers-that-be make these decisions when they don’t have the complete story? The insurance company doesn’t seem to know or understand my health conditions.
Why the struggle?
I suspect they are just worried about the bottom line. I understand medications take a lot of money to produce sometimes and some policyholders cost more than others.
I also understand some medications have a very high markup over manufacturing costs. Because these medications are in high demand but are medically necessary for some people, the individual costs can soar.
What’s the big deal?
What happens if I do not take the medications I am prescribed? Well, obviously, nothing might happen, but that’s really a long-shot prediction.
The risks I run are pretty extreme, however:
Earlier death. According to statistics, Type 2 diabetes cuts about eight years off a person’s life. However, the decreased life expectancy is not as severe if my blood sugar is well-controlled — with lifestyle changes and medications [Type 2 diabetes and life expectancy: Risk factors and tips (medicalnewstoday.com)].
Blindness. My dad was blind for the last six months of his life with decreased eyesight much longer than that. It’s likely some of his other health conditions affected his sight, too, but blindness is a confirmed complication.
Amputation of limbs. I have a client whose sister had just begun having her toes cut off when she died. That’s often how it starts: the toes go first, and then gangrene gradually works its way up the legs. My maternal grandfather lost both of his legs to poorly managed diabetes.
Renal failure. I feel comfortable in stating that many dialysis centers are full of diabetics who are battling this complication. According to the Centers for Disease Control, diabetes and high blood pressure are the two most common causes of End-Stage Renal Disease [Chronic Kidney Disease in the United States, 2021 (cdc.gov)].
It’s really not a pretty future for diabetics to face, regardless of whether or not these things happen. There is a daily reminder that this is not a curable illness that can be ignored. Medications have to be taken, lifestyle decisions have to be made, daily glucose readings have to be taken, and vigilance about checking wounds and their healing (particularly in the feet) has to be maintained.
Who should be deciding what I need and what I don’t need?
With drug insurance comes the prescription benefit management company (PBM) wherein lies the frequently occurring problem. Obviously, these companies are managing what benefits the consumers (us) are able to access. They are the gatekeepers.
I wouldn’t mind them so much if I thought they were looking out for consumers just as much as they seem to be looking out for the drug companies. I don’t think they are, though. I’ve had other medications that were denied in the past because they weren’t in the drug companies’ formularies. I tried their other suggested medications, and sometimes those worked, and sometimes they didn’t.
If they didn’t, usually, my doctor would write an appeal, and the effective medication was approved. For only a certain amount of time, but at least I knew there wouldn’t be a struggle for usually a year.
This is the first time I’ve had my diagnosis denied, however. This means that not only can I not get the particular shots I need, I cannot get any diabetic medications or supplies because, hey, I Don’t Have Diabetes.
It isn’t even a matter of trying a different medication — something I was already doing since they had sent me a letter stating they would no longer cover the medication I was on. This new prescription was one of the two medications they had stated they would cover — so then they denied I had diabetes.
What to do about the “cure”?
So, what do I do? I mentioned to my husband I didn’t know why I was so upset since it was “great news that I don’t have diabetes.” But, we know I absolutely do have diabetes. And I need medication or I will potentially face severe complications.
My doctor wrote an appeal which I feel wasted her time since she prescribed the medication and gave a prior authorization. She’s monitored my diabetes for the last seven years and has changed prescriptions as the disease progresses.
I’ll spend today contacting an advocate with our group policy and also find out how to contact the state attorney general or state department of insurance because I’m sure I’m not the only one fighting this battle. Maybe I’ll sell a car to offset the cost of having to pay for my own medication until this gets resolved because it is definitely not over yet.
Helpful Hints:
· Persistence seems to be a required element for getting what you need. The determination, the stubbornness to keep asking and following up even when you’ve been told, No, five or ten times. Hanging onto the knowledge you’re right and this is wrong, not allowing self-doubt to creep in.
· Keep your correspondence whether emails or physical mail.
· Make a record of the names of the people you talk with on the phone. It’s okay to ask them to spell it and to also give you their job title.
· Ask to speak to a person higher up the chain than they are. Usually, those answering the customer service lines are not the ones who wrote the terms and conditions nor do they have the power to change your situation easily.
· Be as polite as possible. Often the person you’re speaking with sees the ridiculousness of your situation, but they are professionals and cannot throw their company under the bus.
· Keep your sense of humor if at all possible. The whole situation is so ridiculous it might be funny IF it was happening to someone else. Or, perhaps, not even then.
· Contact your state attorney general and the state department of insurance. They need to be inundated with calls over these actions which are becoming more common.
It Happens When You Least Feel Like Dealing With It.
I think it is criminal that sick people (many of them mentally ill who are fighting over psychiatric meds) have to fight so hard to get the medications they need. What’s the last thing most of us feel like doing when we’re sick? Managing all these details which are out of the ordinary. Sometimes it’s a struggle just to understand the details.
We’ll be talking, Insurance Company, and thanks for curing me! I think I’ll trust my doctor, though. Maybe you can help me decide if I should buy purple lilies or tiger lilies. That’s a decision I don’t mind rolling the dice on.
Update: after several written communications, uploaded records, several calls, and over an hour on hold and/or being switched to “someone who can help you,” my doctor was finally able to procure an approval for the medication. I don’t have a complicated case: I have an out-of-range blood glucose level which is best controlled with medication. Years of medication history point that out. I’ve gone nearly a month without medication due to this process. And, now, that I finally have diabetes again, the pharmacy doesn’t have the medication in stock. Seems there’s also a shortage.
C. J. Clinton is a licensed professional counselor who is usually easy-going, a trait she’s learning to overcome in situations like this.
