Type 1 diabetes is all consuming. The stigma of misinformation. The inescapable quest for medical perfection. The 65,000-plus injections per lifetime (a lifetime which tends to be slashed 12 years from average as soon as youâ€™re diagnosed).
The autoimmune disease takes hold of young bodies and never lets go. Without reason. And with no warning of the ever-expanding costs.
A day in the life of a diabetic is an uphill battle. One that requires constant cognisance of the individualâ€™s food intake, energy output, blood sugar levels, general health, and equipment (glucose meters, needles, insulins, food) that keeps them alive.
I know because Iâ€™m one of the millions of Americans living with government-recognised disability. And even then, I consider myself one of the lucky ones.
As a dual citizen living in London, much of the equipment I rely on to stay alive is covered by our tax-funded National Health Service.
Of the million-plus American diabetics, most donâ€™t have it so easy. With or without insurance, the financial burden of essential monitoring equipment and medicine can give diabetics a paralysis of options between debt and death.
Kimberly Lavigne Martinez, 30, is just one of the majority forced to gamble with Type 1â€™s fiscal demands: â€śI was diagnosed at 17 and lost Medicaid at 19, leaving me on my own and uninsured. I had to ration the little insulin I had left because I couldnâ€™t afford it and went into DKA [diabetic ketoacidosis – a painful and life-threatening complication] three times.
â€śEach episode of cost me almost $100,000 and I still donâ€™t have the means to pay it off. How on earth could anyone who canâ€™t afford insurance afford to pay that?â€ť
Unfortunately, her story – typical of so many Type 1s – went from bad to worse.
â€śMy first kid was born eight weeks premature because I was rationing my insulin and high blood sugars meant high blood pressure for me – causing preeclampsia. I got insurance with my job after he was born but my insulin alone was $160 a month and I only made $8 an hour.
â€śI thought things would be different with my second son but he was born six weeks early due to the same complications and my kidneys failed less than a year later.
â€śAt that point, I had to quit my job. I was lucky enough to make a nurse friend who would sneak free samples of insulin pens for me to help my family but the damage was already done – I had to start dialysis.
â€śWith no job, I once again had no insurance so had to stay in the hospital for six weeks waiting for Medicare to approve the dialysis. While I had to stay in Kansas and my husband obviously had to work, my boys went to Louisiana to stay with my parents and in-laws.
â€śThe cost was so much more than financial. My youngest was trying to call other people mama – it was heart wrenching. We eventually decided to move there as a family, and five years into dialysis my brother saw how much time I was losing with the kids and offered me one of his kidneys. Thankfully it went well and Medicare and Medicaid paid for my insulin during those years.
â€śWhen I finally got control of my blood sugars, Medicaid kicked me off. They said we made too much to qualify but, honestly, we struggle. When Medicare decides to kick me off – which should be soon because they only cover you during dialysis and the three years following a transplant – there is no way weâ€™ll be able to afford my medications. My immune suppressants for the transplant will cost up to $3000 dollars a month.
â€śI owe it to my brother and kids to make sure Iâ€™m around as long as possible, but that also means Iâ€™ve focused on dialysis and the care of Type 1 first. Iâ€™ve researched every option imaginable but I donâ€™t know what to do.
â€śI feel like so much of a burden and have developed such severe anxiety since being diagnosed with Type 1. I think itâ€™s like PTSD. Itâ€™s traumatic what we go through just to stay alive.â€ť
The latest research from the International Diabetes Federation, which questioned 7,000 people about diabetes in seven countries, has found that half of people living with diabetes (51%) feel their diagnosis has put a strain on their family. Furthermore, at least two in five said they did not want to be a burden to their families (46%) and the same number of people agree that the cost of diabetes medication alone worries them.
She continued: â€śWhy do we have to pay to stay alive? Isn’t staying alive included in life, liberty, and the pursuit of happiness? None of us asked for this or did anything wrong that led to diabetes. Conditions like this need to be covered by universal healthcare. It has its problems but no-one should ever have to choose between medical debt and dying. Iâ€™ve had to make that choice and still have nothing but neuropathy, gastroparesis, high blood pressure, retinopathy, and a panic disorder to show for it.â€ť
Even for those with secure and reliable insurance, Type 1 diabetes causes constant concern.
47-year-old Erin Clausen, the Type 1 owner of Belle en Vie Salon & Day Spa in California, said: â€śOur insurance is great, for now. But my future with insurance may not be so stellar looking forward a couple years. Iâ€™m a walking pre-existing condition.
â€śI have four autoimmune diseases which all require medications and treatment. Not just Type 1 diabetes. I have some constant heart arrhythmias and the doctor thinks I have Postural Orthostatic Tachycardia Syndrome. I may be having to close my business and file for disability in the not to distant future.
â€śIâ€™ve already had to cut back to three work days a week because of the level of exhaustion Iâ€™m feeling. It is a horribly bitter pill to take. I have always been a total workhorse and Iâ€™m very much in demand but simply standing up makes my heart rate go from 55-75 bpm to 150-200 bpm.
â€śItâ€™s funny, my Apple Watch that I use with the Dexcom [a popular continuous glucose monitor (CGM) for diabetics] is what told me I had this problem. Doctors had been dismissive about my symptoms for many years, chalking all of them up to diabetes and anxiety.â€ť
Dexcomâ€™s latest diabetic survey, in fact, found over three quarters (76%) complained of suffering stress, anxiety attacks or bouts of deep depression. Even the prospect regular blood glucose checks (in an effort to do the job of our ill-equipped pancreases and regulate the levels with insulin injections and/or food) caused 52% of those surveyed prolonged feelings of anguish and anger.
Clausen continued: â€śMy husband and I are really grateful to have awesome insurance – his work pays out over $1000 a month for each of our medical insurance premiums. But that benefit would keep my husband in his work alone. Even if he didnâ€™t want to. We need the insurance too badly.â€ť
Diabetics deserve far more than a paralysis of the unjust. This is an epidemic and more must be done.
Millions have an imperative need for better education and affordable medication. The cost is simply too high otherwise.