I

n a raw crypt beneath Our Lady of the Conception of the Capuchins church in Rome stretches an exuberant display of skeletal remains. The piled skulls, fanned hip bones, and arched spines — remnants of centuries of Capuchin friars — bear a warning. Printed on a sign in three languages, it reads: “What you are now, we once were. What we are now, you shall be.”

I was studying abroad when I faced and promptly buried that grim exhortation in a lemon gelato. I was athletic, healthy, and 21. Surely I would never be them. My body was mine to control.

But two years later, just before my college graduation, odd symptoms began to surface: blurred vision, fatigue, an insatiable thirst. I hoped I might just need glasses, but the diagnosis came with the swift lance of a finger to measure the sugar in my blood: 900. “You know you have diabetes, don’t ya, dear?” the nurse said.

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It was type 1, an incurable autoimmune disease. A packet I was handed in the hospital outlined how every part of me — nerves, heart, brain, skin, all — would be damaged by the excess blood sugar scraping through my vessels like microscopic shards of glass. I was told I would have to endlessly count carbohydrates, test my blood sugar, and inject insulin to prevent the disease’s serious complications and early death. I was told that this would be a lifelong effort.

“At least I don’t need glasses,” I joked to my then boyfriend, now husband. He was just starting to look at medical schools. I’d be his first patient.

“We’ll figure it out,” he said.

And we did. We learned how to tap bubbles out of insulin, how to calculate boluses of this vital hormone, how to count carbs, and more. Nearly 15 years later, it’s been more than 30,000 finger pricks and 1,700 site changes for my inserted insulin pump. It’s been waiting — for low blood sugars to rise, for high blood sugars to fall. It has been worry and strength. It has, by providence and by work, been otherwise good health so far.

I knew it would be hard. I did not know it would feel, sometimes, like sprinting in water. But what I never would have believed is how fiercely I have to work to get the chance to fight at all.

Even with good insurance, I’ve spent more hours untangling the inscrutable details of my policies over the years than I’d want to tally, just like so many others with chronic illnesses. I’ve come to understand medical versus pharmacy benefits, limitation overrides, essential health benefits. When my insurer denied coverage of the number of test strips I needed to maintain good control of my blood sugar, it took endless calls and a deep dive into the policy’s write-up to uncover what I was due. When my insulin pump tubing kept detaching in the middle of the night, I had to track down the vice president of quality assurance — unearthing his email from a posted company memo — to get it replaced.

Those of us with type 1 diabetes are lucky to be living now in a country where we have access to these medicines and technologies at all, of course. And it may seem trivial, this time spent on hold, asking for managers, delving into tiny text. We all do this sort of thing, after all, with various services and businesses — cellphone providers, airlines, cable companies. But there is something deeply galling about toiling for the right to stave off the loss of your limbs and eyesight. These hours are precious when you have a chronic disease that already takes too many of them.

I’m the first to admit that I am fortunate. Diabetes groups and message boards are full of stories of people who are denied basic care or the technologies to help them manage their disease, of drained bank accounts, of rationing. Even with the Affordable Care Act’s essential protections, nearly 1 in 4 chronically ill insured Americans are denied prescribed treatments. Insulin prices are soaring. People with diabetes spend more than $9,000 a year on caring for their disease.

I’ve met people with diabetes who are forced to string out their use of lifesaving insulin, to forgo glucose testing, to skip the treatments and screenings required to stay healthy. Some have died doing this.

“It’s disheartening to have an insurance company literally sabotage my efforts,” a friend with type 1 diabetes recently messaged me. “It’s horrible that they’ll cover an ambulance ride, eye injections, or kidney dialysis, but not the things that will help me avoid them.”

These restrictions are about the growing demands on an imperfect health care system. They are about money. But it seems they’re also about the boundary between the healthy and ill, the us and them, the blameworthy and faultless.

Scholars have shown that treating the chronically ill as “others” — deviant or different from the “normal population” — directly informs health care policy. During last year’s health care debate, from the frank denial of coverage for pre-existing conditions in the House’s version of the bill to the Senate’s back door into the same, the current of “othering” was there. Republican Rep. Mo Brooks of Alabama captured the zeitgeist when speaking on high-risk pools: “They will reduce the cost to those people who lead good lives,” he said.

That kind of vanity can infect even those charged with our care.

“It’s disheartening to have an insurance company literally sabotage my efforts. It’s horrible that they’ll cover an ambulance ride, eye injections, or kidney dialysis, but not the things that will help me avoid them.”

A few years ago, my pump, which provides round-the-clock insulin, failed without warning. The silent lack of the vital hormone had rapidly and unexpectedly driven me into diabetic ketoacidosis, a dangerous state in which the body burns fat for fuel, creating a wellspring of acid that rose into my chest, even while my blood sugar remained normal.

From an emergency room cot, I watched a mass of hazy figures form just beyond my bay. “Non-compliant diabetic,” a doctor said to his team, glancing at me from the hall.

My husband, a surgery resident by then, overheard as he was rushing in. “Not her fault,” he corrected. “She just needs help.”

Especially against a backdrop of relentless effort to stay healthy, the assumption of culpability can sting. But the issue is much more important than feelings, especially now. We’re on the cusp of a true revolution in diabetes, with the emergence of artificial pancreas systems that “close the loop” between an insulin pump and a glucose monitoring system. They represent our best shot at exponentially easier and longer lives.

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In some ways, however, these miracle technologies make us more vulnerable than ever to how we are seen and what we are granted. Coverage restrictions — sometimes almost nonsensical ones — already abound for less costly technologies. More fundamentally, basic coverage of those with pre-existing conditions is once again threatened. Where does that leave us?

Health care is hugely complex, and addressing its shortcomings is a Herculean task. But in that effort, it seems stunningly myopic to trust that less care and more profit will mean that people with diabetes and other chronic illnesses will figure it out, somehow, on our own.

If we have to scrounge even harder for every ounce of our care, we will be more ill, more expensive, less productive, less alive. People with type 1 diabetes need a real cure. In the meantime, we need access first to insulin and second to transformative technologies without a fight.

I am grateful. I am hopeful. I am fearful. I remember the hubris: Those bones are them; this body is you. I know its self-protective power. Maybe you need to teeter on the edge between to know its lie.

Kylah Goodfellow Klinge is a biomedical communications consultant whose clients include diabetes treatment and research organizations.

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  • how true the insurance company does not want to help people because they will mot make money. what a crime this is yet our law makers don’t seem to care. help

  • The study of intensively treating blood sugar targets was the United Kingdom Prospective Diabetes study. Although this was with T2s rather than T1s, there’s no reason to believe that insulin is any less damaging in T1s. See https://idmprogram.com/not-treat-diabetes-t2d-38/

    Regarding the thiamin-kidney study Mike Eades gives a good summary of the results at
    https://proteinpower.com/drmike/2009/04/19/thiamin-and-diabetic-nephropathy/#more-2869

    Treatment was for 3 months followed by a 2 month “washout” period. I was incorrect in saying that 35% had no evidence of protein in their urine, rather it had reduced to normal levels ie they were “cured”.

    Re the efficacy of low carb High fat diets read this
    https://proteinpower.com/drmike/2010/01/12/four-patients-who-changed-my-life/
    Mike Eades has a lot more on the superiority of LCHF over LFHC, and analyses some of the studies that claim to prove otherwise, pointing out that either their version of low-carb is actually high-carb (just slightly lower than their “low-fat” diet) or that the conclusions are not supported by the data, and sometimes the press release goes even further and makes claims not in the abstract. Yet most doctors’ views are based on the headlines and very few read even the abstract, let alone the full paper.

    BTW the “Protein Power” diet is actually LCHF moderate protein, despite the name. Mike explains that the publisher picked the name over his objections, and since the first book was a runaway best-seller the publisher isn’t about to change it. Incidentally, Dr William Davis of Wheat Belly fame says that he wound down his cardiology practice because after he put his patients on a grain-free LCHF diet they simply ceased having cardiac events. So much for the claims that “thousands will die” on LCHF diets.

    I see Kylah that you consult to “diabetes treatment and research organisations”. I have to say that most of the treatment offered to T2s like me, particularly by the ADA, is positively harmful. Their mantra is: diabetes is incurable and progressive, so eat lots of carbs, take ever-increasing quantities of drugs, then start injecting more and more insulin and look forward to losing your limbs, kidneys, eyes, brain and eventually your life, but in the meantime you’ll make pots of money for our sponsors in Big Food and Big Pharma. Similarly, the research people want to create an expensive drug that does not actually cure you but which you’ll have to take for the rest of your life, so that they can cash in too. The situation for T1s is scarcely better, since the ADA-recommended diet and its large insulin doses guarantees obesity, heart disease and all the other complications.

    Meanwhile, Prof Roy Taylor at Newcastle Uni (UK) has shown that he can reverse T2 & NAFLD in 8 weeks with an 800 cal/day a diet, and Jason Fung in Toronto is curing T2 even faster with a fasting regime. Are the ADA or the research organisations interested? Hell no! There’s no money for their bosses … er, sponsors .. going down that route. The thiamin study was published in 2009 – 9 years ago! How many patients’ kidneys, limbs and eyesight could have been saved if the ADA and similar organisations had picked this up and promoted it, or at the very least funded a large follow-on study? Thousands at least. We need a patients’ revolt. To the barricades, citizens! Off with their heads!!!

    • This hasn’t at all been my experience at all of medical advice in the US as a type 1 diabetic: the evidence-based advice you share and have been fully supported/encouraged by all doctors I’ve met except one I can recall (a hospital-based endocrinologist not from the US). Medical training here is much less didactic than you imagine–and certainly less antiquated; I know UK-based medical training can be a little more top-down/less progressive. However, this article is about healthcare access–and I think this series of posts takes off from that. People are dying here due to lack of access to insulin. Your information, though critical, might be better shared in a space where patients are seeking this information.

  • Yet more evidence (if more was needed) that the US political and health systems are broken.

    Insulin was developed nearly 100 years ago and the original patent holder refused to charge royalties for such a life-saving drug. So why’s it’s so expensive a century on? Here’s Dr Jason Fung on the subject:

    Insulin, first discovered in 1921, revolutionized the treatment of type 1 diabetes. Dr. Banting licensed insulin to pharmaceutical companies without a patent because he believed that this life saving drug for T1D should be made available to everybody who needed it. So, why is insulin so hard to afford today?

    Only three pharmaceutical companies manufacture insulin in the United States – Eli Lilly, Sanofi and Novo Nordisk. In 2012, it is estimated that insulin alone cost the US health care system $6 billion. How can they make so much money from a century old product? In 2013, according to firecepharma.com, the best selling drug for diabetes was…. Lantus, a long acting form of insulin. So, after all the research of the past 95 years, the biggest money-makin’, mama-shakin’ drug was insulin? Yes, sir. Worldwide, this drug alone made $7.592 billion. That’s billion with a B. Oh, but the news gets better for Big Insulin. Out of the top ten, various insulins also ranked #3, 4, 6,7,9, and 10. Holy patent extensions Batman! A full seven of the top ten drugs for diabetes are insulin – a drug close to a century old. It’s like your 95 year old grandfather beating LeBron James at basketball.

    Tweaking the insulin molecule allows additional patents and cheaper generic medications can be kept at bay. That this clearly violates Dr. Banting’s original intention doesn’t matter. There is no clear evidence that these newer insulins are any more effective than the old standards. While there are some theoretical benefits, the outcomes in T2D have only worsened even as these newer insulins became more widely prescribed. Hiking prices is another lucrative technique. From 2010 to 2015, the price of newer insulins rose from 168- 325%. Without generic competition, there is clearly collusion between the companies to keep prices high. After all, shareholders must be kept happy and the CEO needs a private jet.

    https://idmprogram.com/diabetes-economy-t2d/

    Patents providing monopolies on “improvements” that aren’t, price fixing and a supine Congress and Executive Branch. Truly, the USA has the best politicians that money can buy!

    Kylah you may already know the following but I’ll lay it out just in case you haven’t come across it. The conventional medical advice is “carb up, then shoot up”, it doesn’t matter what you eat because you can just inject more insulin. Hence the advice from the ADA to eat lots of carbs. However, big carb meals require big doses of insulin, and given the poor inaccuracy of personal glucose meters you will inevitably either overshoot or undershoot, condemning you to a roller coaster of hypos and hypers. By eating a low carb diet you minimise the insulin dose and minimise the hypo or hyper. The bible here is “Dr Richard Bernstein’s Diabetes Solution” and his website. Dr B is a T1 since age 11 and pretty much pioneered self-management of diabetes.

    Another reason to limit the carbs and the insulin is that not only are high post-prandial BGs harmful, but so are high insulin levels. There was a study where they medicated diabetics aggressively to tightly control BGs, assuming that by doing so they would prevent the diabetic complications. End result – the treatment group had the same level of complications as the controls. Ergo, the insulin is at least part of the problem and maybe the major part.

    You’re probably asking yourself, if I can’t eat carbs what can I eat? The answer is moderate protein (because excess protein is converted by the liver to glucose), non-starchy vegetables and fat. In fact, fat – saturated & mono-unsaturated – should be the major source of calories. Avoid “healthy vegetable oils” like the plague because they are most definitely UNhealthy. gThese seed oils are extremely high in Omega-6 fats which are pro-inflammatory and are implicated in obesity, NAFLD, heart disease and cancer. Fruit oils including olive, avocado, Palm & Palm kernel are OK. I can visualise your doctor husband recoiling in horror at this dietary advice, since it’s totally contrary to what he was taught at med school. It’ll give you a heart attack!!! Actually no, it’ll protect you against heart disease. The prevailing dogma, the diet-heat hypothesis, never had any evidence to support it and the latest and largest study zever undertaken (the PURE study) was unable to find ANY association between saturated fat and heart disease. Whereas in every study that compares low-carb high-fat diets to low-fat high-carb, the low carb wins hands down on all the parameters. Start by reading low-carb advocates Dr Michael Eades & Dr Malcolm Kendrick’s blogs. These guys actually read and analyse the scientific literature and all their statements are backed up by links to the actual scientific papers.

    Lastly, consider supplementing thiamin to protect your kidneys and probably your eyes and arteries too. Diabetics are known to be deficient in thiamin and many of the complications are similar to those of thiamin deficiency. There was a study done in Pakistan where 20 diabetic patients with protein in their urine (indicating kidney damage) were treated with thiamin in addition to normal therapy for several months. At the conclusion of the study 7 of the 20 (35%) showed no trace of protein in their urine ie their kidneys had healed. Not only that, the other 13 all showed reductions in protein, indicating that they too were healing. Compared to 20 controls receiving normal therapy alone, only a couple of the controls improved and the rest either remained the same or worsened. Given these results, I’m not waiting until I develop kidney disease but am taking 300mg/day of benfotiamine, a fat-soluble form of thiamin (Vit B1). It was developed in Japan to treat alcoholic peripheral neuropathy and presumably should be effective against diabetic PN as well. Also since the lining of the kidney vessels is an extension of the endothelium lining your blood vessels, the B1 should also protect your arteries and the vessels in your eyes.

  • Your experiences with insurance companies deliberately sabotaging your efforts to avoid emergencies are not unique to diabetics. Insurance companies’ sole mandate is make money from every angle possible. Maintenance of healthy habits and chronic conditions is expensive and time-consuming, which works against their immediate bottom line despite proof that the long term approach actually costs less. That’s why this country needs to completely dissolve the current system in favor of universal health care.

  • Great article thanks for writing. My sister is T1D and struggles with this on a constant basis. It’s totally awful how they mess with people and their much needed supplies and get denied and end up on the phone for ages…

  • Having been Type-1 since 1962, I find myself fighting monthly just to get the supplies I need to maintain my diabetes. That in itself is debilitating. If there was suddenly a cure for Type-1, we probably couldn’t get it as it’d be denied by the Insurance companies (for which we pay dearly) or the PBMs and would be too cost prohibitive to afford on our own. I wish I could have a business like the health insurance companies where I can charge excessively and provide less and less to those who pay me. Myths like those expressed by Rajeev don’t help matters either.

  • Carbohydrates directly cause diabetes, cancer, obesity, liver disease, heart disease and dementia.

    Stop eating carbs = no insulin. Why should the insurance companies pay for preventable disease?

    • Genetically contribute to Type 1 diabetes. Additionally, with type 2 (the most common), there are multifactorial causes. Carb control helps to manage diabetes and even if you are diabetic, you still need to eat carbs. Please do your research.

    • Did you not read the article? Type 1 diabetes is an “autoimmune disease.” It is not caused by not exercising or eating too many carbs. It is understood that it is often caused by a virus killing the beta cells in the pancreas, which means the body can no longer process ANY carbs without adding insulin.

      Type 2 diabetes is a totally different animal, and CAN be caused by environmental factors.

      I wish the diseases had been named differently because, although the treatment is similar in some cases, the NEEDS/CONTROL are different for each type.

    • Please do not expect an answer to such a ridiculous statement. I hope a child of yours never has any illness.

    • Rajeev, the only dietary correlation with Type 1 diabetes is Type 1 diabetes is less common in people who were breastfed and in those who first ate solid foods at later ages.And that’s theoretical, not conclusive. Do you think they were responsible for dietary choices made for them while they were infants?

      Now your lack of intelligence, on the other hand, is likely to be multifactorial. There could well be a genetic component but it’s more likely to be just good old-fashioned ignorance. A result of reading very little and understanding even less.

    • That is absolutely false. Type 1 diabetes is an au Autoimmune disease. Go educate yourself.

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