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Uninsured with diabetes in the USA

Uninsured with diabetes in the USA

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The USA is in the midst of some very scary changes in healthcare. As a type 1 uninsured diabetic for the past six years, I have miraculously been able to survive. I have not had an A1C test in those six years, I cannot afford to test my blood sugar every day, and I have gotten off the insulin pump that I depended on for 20 years. I have had times of desperation where I have used expired insulin, skipped some meals and diluted my insulin with water until I could afford to buy my next vial, but I am alive. I would like to suggest a few things to those who are possibly facing a future with no insurance.

Hoard as many supplies as you can. Ask your doctor to give as many refills or samples as they can, because when you lose your insurance those supplies are no longer covered. My insulin at one point cost me $800 a month. I bought it until I could no longer afford it. Because I was no longer insured and unable to afford to go for doctor visits, my prescription eventually expired. When this happens, you are left with going to an emergency room or, like me, you have to go back to basics with no pump and old, cheaper insulin that I found barely works for me.

Do not expect a pharmacist to help you. Some might, but I was told that I had no business buying insulin if I did not know how to use it correctly. I suggest coming up with a game plan. Ask your doctor for an emergency sliding scale to figure out what happens when you cannot get the insulin you need. Ask about any equivalents of what you use now and learn about the prices of them. If you are not already in a patient assistance program, I suggest you join one. If you qualify, don't wait until you have no prescription and/or doctor, as most programs require them. Some doctors will help you, even if you are not able to pay for a visit. But some will not. As I said, prepare for the worst. If your doctor is willing to help you out while you are not insured, remember that you will still need lab tests, and if you have other issues you may need a referral, which is expensive.

It is possible to get medicine and healthcare in certain other countries at a significantly lower cost. After two years of being uninsured, I was able to buy a plane ticket and a week of hotel stay for the price of what I paid for a month of insulin in the USA. When I went to the pharmacy there to buy Humalog I was shocked to find that to buy a month’s supply, it only cost $20. I bought as much as they would allow me to and it lasted me a year. Some of it expired, but I used it anyway. Desperate people do desperate things.

People will claim that it is not that difficult or serious, and that there is "always help". I can tell you with 100% certainty that this is not always true. Do people want to help? Sure, but so much depends on where you live and what is available. Can you find a band aid solution? Maybe. For me, finding help for the most expensive chronic illness in America until death do us part, or until I was insured again, was like finding a needle in a haystack. I can assure you that I have checked every program, I have spoken to advocates, called my politicians, written them…and in six years have not gotten anywhere.

Since I was diagnosed almost 38 years ago, much has changed. The tools we had at my time of diagnosis were pretty primitive compared to what exists now. Because I know how to manage diabetes with very limited supplies, I believe it has helped me survive. My fear is for people who do not know how to survive without all the new gadgets and accessories. No to mention that while I was on an insulin pump I was in much better control. Now I am just trying to stay afloat.

I hope we can one day speak of these times as “those days when Americans struggled with healthcare costs” because things will have improved. Until then, do not give up hope.