My Greatest Diabetes Fear

Without insurance, the costs of diabetes can become overwhelming

| Oct 3, 2011

When I think about my greatest diabetes-related fear, the first thing that comes to mind isn't complications. It's health benefits. It may seem funny that my fear of health problems is second to my concerns about health insurance, but without coverage my good health would be close to impossible to maintain.

I've been without insurance three times in my seventeen years with type 1 diabetes. Each time has been terrifying. The first was when I was dropped from my parents' health insurance. Being diagnosed as an eighteen-year-old meant that I was swiftly shown the door by our insurance company. I was forced to cut costs wherever I could. I re-used my syringes until they dulled and became painful. I paid for insulin and test strips at retail prices as a part-time college student with meager retail wages. Needless to say, I hardly ever ate, rarely saw the doctor, and barely made ends meet.

The second time I was uninsured, I found myself hospitalized twice in a matter of two weeks. It happened shortly after I had resigned from two jobs to be a stay-at-home mother. I was horrified by the pile of bills that came from the two trips to the emergency room. Staying on top of my health was a priority, but I also had to pay something to the hospital each month to avoid being sent to collections. Paying for diabetes supplies on top of everything else became more and more difficult.

The third time I was without health insurance was when my husband and I lost the business we owned. None of the private insurance companies we spoke to would offer me coverage once we told them I had type 1 diabetes. I immediately took the first job I applied for, which was at a call center for a catalog company. It was a temporary assignment with no health benefits until after the 90-day probationary period. I prayed that I'd be kept so I could be eligible for insurance. Out of our group of nearly 20 temporary employees, they kept two. I was grateful to be one of them. The insurance wasn't great, but it was far better than the alternative.

I attempted to get an insulin pump but found that even with the insurance I had, it was still thousands of dollars out of reach. I was crushed. I wondered how it could be that only people with a healthy bank account or those blessed with excellent health benefits were afforded the technology of continuous insulin delivery.

Today I work in a healthcare setting and have good insurance, but times are still hard sometimes due to ever rising prescription costs and changes in coverage. People with diabetes cannot stop taking their prescriptions because they run out of money. We simply go without other things in life because we need our medication to live.

I'm thankful for my insurance and hope never to be without it again. Those of us with diabetes have enough to worry about, what with our blood sugar numbers, diet, exercise, and, of course, life in general. Insurance and proper medical care shouldn't be a luxury.

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Categories: Complications, Diabetes, Diabetes, Health Care, Health Insurance, Insurance, Type 1 Issues

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Posted by Anonymous on 3 October 2011

This resonates with me far too well. Diagnosed at the age of 3, I too have spent periods under- or un-insured. Growing up, we did not have the best insurance, but I was lucky to be able to receive free and discounted supplies through our local Children's hospital. When I lost all insurance at the age of 18, Children's continued to provide some medical care and supplies (they will keep you on until age 24), but I still had to buy some supplies (test strips being one of them) out-of-pocket. I worked 2 jobs to help pay for college and my living expenses, but also had to take out student loans to help cover the cost of my D supplies! When I finally did get insurance through my job, it was horrible and I could not keep up with my medical bills. I ended up in collections several times, including one time when, because of rationing my insulin, I ended up going into DKA and landed in the ICU.

I am fortunate enough now to work for the federal government, where I get excellent insurance. I do have a pump, but I still spend about $400/month out of pocket for all my supplies (insulin, test strips, ketostix, pump supplies, etc) and co-pays for doctor visits. Starting in 2013, the amount I can put into my flex spending account is going to drop in half, and this is really going to hurt me financially.

My medical costs are a constant source of concern for me and my spouse, even more than the complications from this dreaded disease! There is so much I have to do to stay on top of things, and I can only do those things if I have $$$ and insurance. It is so frustrating, because when I haven't had adequate insurance, my health suffered and this only ended up costing me and the health care system MORE money.

Posted by Anonymous on 3 October 2011

I know how you feel I was diagnosed three weeks ago with type 1. I am 25 and can't find insurence. Ive gotten declined five times from different insurance componeys. And I make more then 502.00 dallors a month and the state of conneticut wont help enless you make less then that. I never realized how important insurance was till now.

Posted by Anonymous on 4 October 2011

Feel your pain also. I have been very fortunate to be able to support myself as well as my wife who is also diabetic. I have also been fortunate to have insurance, not the greatest but some insurance of sorts. I don't have the luxury of extra spending money, and yes we cut corners on household things. Our children went lacking because we couldn't afford extra curricular activities. We still dont' do group functions, or even a saturday night out. Paycheck to paycheck is my lifestyle. one time in DKA and ICU also because of lack of provisions. We live in a land of plenty, but only if you have plenty of $$$.

Posted by Anonymous on 4 October 2011

I was diagnosed with type 1 in 1970 at age 29 and through most of my working life I didn't have insurance, or if I did, it excluded "pre-existing conditions" and would not pay for diabetes care. It's amazing I'm still alive all these years later and also that I was able to work until age 60 when eye problems forced me to quit. Now I'm on Medicare, and it's the best insurance coverage I've had so far. With a supplemental policy ($200 per month), it pays for a pump every 5 years and supplies, including insulin, a HUGE help. But it won't pay for the "best" care--it won't pay for a continuous glucose monitor, which I could really use at this time in my life. It has been such a struggle to survive that I sometimes wonder whether I've been lucky or unlucky to stay alive this long!

Posted by Anonymous on 4 October 2011

I know this story because I also went through times without insurance, and it was truly scary. The most important thing when I apply for a job is the insurance coverage, and I am truly blessed to have a job that has good health coverage, and I don't complain about the salary because of it.

Posted by chanson3633 on 4 October 2011

Thank you, Ms. Eiser for your thoughtful article. This is a real problem, and not only for people with diabetes. Proper medical care indeed should not be a luxury.

Posted by Anonymous on 4 October 2011

I feel fortunate to live in Canada. Our health system has its problems but at least I never have to worry about coverage for basic health or hospital costs.

Posted by ghlatty on 4 October 2011

The pre existing condition plan has been in force since August of last year. Not all states participate, but you can go to to see if you can join. This was part of the health care reform act. As I recall, you have to be without health insurance of any kind for at least 6 months (been about a decade for me)and submit two rejection letters from private insurance companies, also not a problem for a type I. The rates are very reasonable with a $2,500.00 deduct.

Posted by Anonymous on 4 October 2011

I have had diabetes for 55 years. I have spent the majority of my life worrying about insurance coverage - it has impacted every job choice I have ever made. I never had the luxery of picking a job I might enjoy; I had to take whatever job had the best insurance. On top of that, I have a disabled daughter who is 36 years old. My husband is type 2, and he retired about 5 years ago. His health is even worse then mine. We are on Medicare now, but still have to worry about the "coverage gap" because diabetes supplies are so expensive. We have no savings to retire on - our money has always gone to medical bills. I am sad to say this disease has dominated my life, not because of what it has done to my body, but because I have few choices in life - I have to consider health insurance coverage first.

Posted by Anonymous on 4 October 2011

I am fortunate that I am a Federal employee and have fairly good insurance. I was diagnosed as type 2 years after I was hired and my insurance hasn't penalized me. I am old enough and have enough years racked up (between Navy and NWS) to retire. I can't because I would have too much trouble getting health insurance with a civilian job. So, I keep getting up at 4:15 am and still appreciate my health insurance.

My youngest brother became type one at 14 years of age and was always having trouble getting health insurance. In his final years (he died of congestive heart failure at 44 years, one month, 8 days), he was frequently checking himself in local hospitals in the Portland Oregon area. I believe that if he'd had the luxurity of a family MD (with health incurance), he might still be alive.

It annoys the crap out of me when I read of politicians denegrating "Obamacare" and bragging about wanting to kill "Obamacare". I see these attempts as attempts to create more future uninsured people who will die young. I realize that Health Insurance companies need to make a profit to stay in business but I don't understand why the CEOs have to make 7 digit incomes and why Health Companies can spend millions of dollars in bribing -er- lobbying "our" elected politicans.

At the Kansas State Fair several weeks ago, I talked with a very pregnant young woman. She told me she was a type 1 and told a friend that she was 26. I suspect she was still on her parent's health insurance...

Posted by Anonymous on 4 October 2011

Living in Canada doesn't mean free health care! We may not have to pay for doctor or hospital visits but we still pay an arm and a leg for diabetic supplies and meds! We still need insurance to cover these things, which of course is impossible to get if you have a prexisting condition. Thank goodness the government will help, if your getting assistance that is. It truely is a horrable way to have to live. No wounder depression is so high amung us diabetics!

Posted by Anonymous on 4 October 2011

A terrible and scary dilemma to be in! I am sorry that you have gone through so much turmoil. My heart goes out to you. We must be diligent in who we vote for because there are many out there who could care less if we have health insurance and the current situation in this country is most distressing. We are all deserving of health care and it is imperative to be mindful and don't be afraid to speak up to your representatives. Every day we loose freedoms in this country. We need to take back our country. I applaud those who are Occupying Wall Street and I hope to join them soon. Don't we all have the right to live?

Posted by Anonymous on 4 October 2011

Yes ! I am a stay at home mom of 2 boys ! I have been blessed beyond messure . But not having insurance is a price I pay to have this life ! God has never let me down , he has given me a great doc., and they help me so much ! also I have found lab near my home who is for people without insurace ! It is a huge relief ! :-) as much as I hate to read all of yall with the same problems it is nice to know I am not alone ! I actually do not know anyone who has type 1 ! I am going on 12 years now and my AIC has never been above 6 ! Thank God Psalms 18:1-7

Posted by Anonymous on 4 October 2011

It's disgusting that the United States, the richest country in the world, refuses to provide some kind of national health care for its citizens. I don't care if I have to pay higher taxes to get it - I'm one of the people that would actually make use of it. I'm on my husband's insurance now, and it's okay, but the cap on durable medical equipment coverage means I had to give up my pump and go back on the needle. I've had Type 1 for 31 years now and I have yet to find a private health insurance company that would give me a policy. Even the state 'high risk' pool costs are unaffordable (over $2000 a month for limited coverage). It's as if the health insurance companies are trying to weed us out by denying us the means to take care of ourselves. The 'death panels' everyone was so scared of with the new healthcare laws aren't being conducted by the government. They're being run by the insurance companies and have been for a long time now.

Posted by Anonymous on 5 October 2011

Never have I felt so blessed to have been born in Canada. This message is for Canadian T1s...know how good you have it and don't ever complain. I have access to great care and good hospitals. We pay nothing when we leave a doctor's office or lab or hospital, other than taxes, which surprisingly, are not much higher than in the US. Sure, in non urgent cases there are waitlists, and the vast majority of our hospitals don't have marble floors (but they do have the same high tech equipment as the US), but overall our care is amazing if you have an expensive condition like T1DM. I'd be dead if I lived in the US. I've been to the Mayo Clinic (not for T1 but for another rare condition rarely seen in Canada) and to be honest, I felt my care back home was just as good, if not better, than the Mayo Clinic. Seriously. Our clinics (at least where I live) are just as good, just as high tech, and the doctors I felt, are actually better here in Canada. It's true not all provinces have drug coverage for everyone, but if you are low income, you can always get coverage. Most others get partial or total coverage based on their income in relation to extremely high drug costs. If you have private coverage through your employer, that can also cover drug costs and insulin pumps. My thoughts go out to my poor American T1 friends struggling to get basic care right now...and Canadians, I don't *ever* want to hear you whine about our healthcare....we have it good, don't forget that. Hopefully some sort of healthcare compromise can be obtained in the US, and sooner rather than later...

Posted by David Spero RN on 11 October 2011

Why can't the US expand Medicare to everyone, instead of this crazy system that ties healthcare to your job, so that if you have diabetes, employers and insurers try to avoid you? That would be so simple, but it would cut the insurance companies out, so apparently, it won't happen.

Posted by Anonymous on 24 October 2011

I have had type 1 for almost 40 years now. When first diagnosed as a 10-year old, my parents' insurance didn't cover me well at all. During the 31 years I have been married, there have been a couple of times when I have been scared out of my wits. Once was when I was pregnant with my third child. My husband lost his job and we had no insurance coverage for 3 months. Thankfully, my state had a program for pregnant women who had no insurance and it saved both my baby's and my life. He was born with complications and was in ICU for 2 weeks. Our total hospital bills (combined) were almost $36,000. Imagine what would have happened if I had had to pay that myself. My husband and I would have had to declare bankruptcy. Even though I have insurance with the job I have now, it isn't the best. I have to fight for every pump I want and I had to go through hell to get a CGM. Never forget how lucky you are if you have excellent insurance! With that being said, I still pay out about $350 per month with insurance coverage. Diabetes is one of the most expensive diseases out there. But then again, you ALL know that!!!

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