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Have you ever been without health insurance while living with T1D? If so, please share more in the comments about how being without insurance impacted your T1D management.
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I was diagnosed when I was 19, in 1987. It turned out that my father’s insurance only covered dependents through age 18. While I was in the hospital a social worker got temporary Medicaid for me but it was only for 3 months. Because my parents never divorced, the state decided I was ineligible.
I saw the endo one time after I was discharged and it was a very brief visit, a total waste of time. After three months I was on my own. I was in school and had a part time job. I was able to buy my NPH & R insulin and syringes and I took the same 2 injections a day that I was prescribed when I was discharged. Over the next 10 years, that never changed. I never saw a doctor. I rarely tested my BG because strips were incredibly expensive, so much more than they are now and fewer choices. When I finally got insurance I still had to wait a full year to use it due to having a pre-existing condition. It also had no prescription coverage so I still had to pay out of pocket for all of my supplies even though my state had mandated diabetes coverage. Insurance was unable to tell me how to get my insulin and strips covered. When I saw a doctor (primary care) my A1c was over 15. By this time the internet was around so I went online to try to educate myself.
LizB, I feel your pain. 😰. This is social injustice.
When or if we are able, let us channel our pain to prevent such recurrence thru lobbying, non-violent sit-ins at our legislatures and our congress.
Tn the late 1970s/early 1980s I was in my early twenties living on my own without health insurance after completing undergraduate college studies in theatre and dance. I was working part-time doing freelance odd jobs (waitress, health food store clerk, dancer/actress, yoga teacher, seamstress) w/o health insurance coverage. I had three bouts of severe DKA while uninsured that required hospitalizations and I was at the mercy of whatever form of funding that was available for the uninsured at the time. I don’t recall if it was Medicaid or not. Once I reached my mid-twenties, I matured and realized that I needed to decide and arrange whatever I did in my life to make a living should include access to decent health insurance. Making that decision influenced my life choice to become a nurse because I knew working in a health care career I would always have access to decent health insurance coverage.
BUT you had to give up creative arts career. ☹️.
Wanacure – Actually, no I didn’t give up dance and performing arts … for years I still did it as a side gig and periodically worked per-diem nursing jobs to support the free lance artistic artistic endeavors. For awhile I had pretty good health coverage through a NYS arts org when I wasn’t covered by a nursing job.
I continued to work part-time as a back-up singer, dance teacher/choreographer until my late 50s. Now in my retirement, I work part-time as an occasional writer/editor, diabetes self-care counselor, and a few mornings a week in an office store/print shop. For self-care enjoyment I do non-profit improv theatre as a fun thing to do with my free time.
Yes, for a few years at different times. I rationed insulin, lost weight, reused needles, stretched pump sights way longer than I should have in a desperate attempt to keep pumping. Extracted leftover insulin from pump, had an A1c above 8, had to buy the insulin I did have with a credit card. Finally found an assistance program for insulin the second time I lost insurance. I’m sure there are other crappy things I’m forgetting.
We need Medicare for All. Please contribute to make this vision a reality thru a trustworthy source. Beware of scams.
I knew in advance I would be without insurance for a short time so I stocked up on my meds so I wouldn’t be without.
No, but when I first got married, I was still in grad school and had to be on my husband’s insurance, which was terrible. This was back in the early 1990’s and I believe they covered the insulin but not the syringes(?!?). Fortunately, my dad was also a T1D who had great insurance so he would give me syringes and extra test strips when needed.
Yes, when moving from one country to the next. It is scary what can happen to a T1 diabetic without insurance.
While I have not been without insurance, the coverage of my insurance plans have differed drastically and this has impacted how I was able to manage my T1D.
I was on Medicaid back in 2002- long before CGMs, and test strips were not covered by my insurance plan. I was not aware of cheaper alternatives that exist now (ReliOn) so I was rationing my test strips and not testing like I needed (at that time strips were $1/strip). As a full time student, working part time, I experienced the worst low, losing consciousness while driving. Luckily, I did not hurt anyone/cause any damage. It was the scariest thing that has ever happened to me and I felt so hopeless with the lack of resources.
Could you talk a bit about ReliOn? I looked it up, but don’t know much about it. Is it a cheaper glucometer? On my Medicare plan, if you have a pump and CGM, strips are not paid for. Thank you!
I also use relion strips. I tested their different brand of strips (premium and platinum) against my Endo’s testing kit and they were within range (+/- 5%). It is super convenient to go to the Walmart and pick them up.
Relion is like $20 for 100 strips/20 cents each. My copay used to be $40 for 100, used to test 10-12 times a day. I’ve compared Relion to several brands, well within that FDA accepted range. Using Libre3 thru GoodRX, but still test with this several times a week.
Haven’t had insurance since the 2nd year of Obama care. Mini med really helps the uninsured with discounts. For quite a few years Lilly gave me Humalog for free. Now that there is a generic equivalent I get discounts through good rx. Fortunately I am into self management, and stay up on diabetes research. My primary has known me for 20 years and keeps a chart and writes scripts for me. Since insulin requirements change for numerous reasons I think all type 1s should be taught and be given the right to control themselves.
Yes. I was probably in my early twenties and was too old for parent’s health coverage and before I got a good job. I applied with various health insurance companies but because I was a T1D couldn’t afford the coverage.
In the early 1980s I was without insurance for a couple of years. I would use the disposable syringes and needles a few times to avoid having to buy more. Insulin was inexpensive at that time so no problem there. I had a severe low one night with convulsions and my partner gave me glucose but, since I did not become conscious quickly, he called an ambulance. Of course, on the way to the hospital (about 40 minutes away) I became conscious. I refused to let a doctor see me since I had no idea how I would be able to pay for this and my partner drove us home. He never made that mistake again!
I was without health insurance 45+ years ago for maybe 5 years. At that time, all I needed was insulin and syringes. I was able to get my insulin and my parents helped with the syringe purchase.
I was without health insurance, like many others, in my early 20’s. My parents found a Prudential Health insurance policy for me when I was in my teens and told me to not let it lapse as it would be very difficult for me to obtain another policy with my T1D. But eventually this company priced me out with monthly premiums of about $400 in the 80’s, which I couldn’t afford. It was only a few months that I was without insurance but I was terrified that something serious would happen to me during this time. I continued testing by using my meter only for fasting and bedtime checks and used visual color-coded test strips cut into 3 strips to stretch them out. I must’ve had quite a bit of insulin stockpiled. Since that time I’ve made sure have health coverage through workplace.
I was in a similar place in the 80s, also remember splitting strips to augment my supply. The one huge difference was that the old R/NPH insulins were available OTC without prescription (at least in my state) and reasonably cheap. I also had to buy syringes, which I seem to recall became available without a prescription at some point, though that was a thornier issue. But man, scissoring those color-coded test strips—that brings me back!
Thankfully, no, and we obtained a very good supplement prior to our son’s diagnosis.
For a brief time (maybe 2-3 months?), I had no health insurance in the 1970s. I finally decided to get insurance because I had no insurance through my work. My cost per month without employer-provided insurance, even in the 1970s, was over $600/month. Laws have changed, and now that kind of gouging would not be legal. At that time, insulin was very inexpensive, even with date-adjusted pricing, so I managed for the brief time without insurance.
I don’t need any insurance because I live in Italy. Here, like in most European countries, National Health Service provides drugs and medical assistance.
You are truly blessed.
Health care in most European countries is so much more compassionate and civilized than in the US.
I’m echoing many of the comments about experiences in the days when T1’s were “rated” and not only health insurance but also life insurance was too expensive for young adults. In the early 1980’s, at the age of 30, I could afford only a basic hospitalization policy. I became pregnant and my son was born 2 most prematurely. Insurance benefits ran out and I had to give up a small nest egg that I had inherited in order to qualify for Medicaid. Long story short, I am now retired and facing serious financial difficulties. We have come a long way in making insurance portable, individualized, and eliminating pre-existing conditions. Even with that, affordability is still an issue for many.
Being without insurance, albeit temporarily, taught me to reuse supplies and make them go further than they were labeled for.
I was diagnosed when I was 18 in 1976 and in college. Insulin (NPH if I remember correctly), syringes, and test strips were available without a prescription. I got by through college. After college, I was hired as a teacher and the school district had health insurance. I’ve had insurance ever since.
I have been diabetic since I was seven. I had insurance under my parents until I was 21, then no insurance until I was 33. Coming up with $120 4 times a year to see my endocrinologist took up the rest of my entire paycheck—after rent, groceries, utilities, car payment, and insurance. I was working 2 jobs at the time. Besides those appointments and buying syringes and insulin, my diabetes management was nil. It wasn’t until I was 38 and finally able to pay for good insurance that I was able to get serious about my diabetes. I am now 61 and suffering the consequences of years of poor management.
Yes, for 3 months while I was transitioning to a new job that didn’t provide insurance coverage for the first 90 days. I stockpiled my meds and equipment through that period.
Thankfully I did have coverage through the Healthcare Market place. Even being a contractor now it’s expensive.
I was without insurance for a couple of years. I had to buy insulin out-of-pocket. It was about $450 a vial. Someone pointed me to a pharmacy in Canada that would mail the insulin to me. I could get a vial for $30. This helped a lot. There had been other things I did without but I made sure to get my insulin. I was thankful when I got a new job and insurance to cover my diabetes supplies.
I was without insurance in the early 90’s for awhile. I was finishing up college, so my endocrinologist would only see me if it was an emergency, my parent’s helped with my insulin, syringe’s and test strips. I remember once finished with school my only requirement when applying for jobs was health insurance that had no pre existing requirements. Happy I no longer need “hall way” endocrinologist appointments any longer. Meaning off the books, no charge.
When I was first diagnosed, I was 24 years old, out of school, and unemployed. Because I wasn’t a student, I was no longer on my parents’ health insurance. My mother had to fight tooth and nail to get me added back on until I found a job.
I was without insurance when I was in between jobs. It was hard and expensive. Particularly for insulin.
Too scary to even think about
Several years ago I was actually on Cobra insurance and with really high co pays.
There was a period of five years in my life I did not have insurance and I went to public health and they had a clinic and I found a very good doctor there and it was cash no insurance. The rep at the pump company got me some supplies and help me out with those at a discount and I bought regular insulin and test strips at Walmart which were much cheaper. All in all I was on top of my health and stays as healthy as I could and that was what I do anyway. I had no major issues at the time no other health issues I mean I don’t take prescription drugs so I didn’t have a problem with that it worked out. I remember people saying to me you don’t have health insurance and I said no I don’t right now I can’t get a policyI it’s within reason with my diabetes even through the state the policy was $1500 a month that was not in my budget at the time. I did what I had to do and it worked out just fine
Yes and no. As a young adult, fresh out of college and getting my first full-time job with benefits in 1991, imagine my surprise when I learned that the health insurance I was paying for exempted pre-existing conditions for the first year. Thank goodness (meaning all the good people that made it happen) for Obamacare eliminating that pre-existing condition loophole! No I did not have health insurance through my parents and yes I did have daunting student loan debt, some of which at 12% interest. (I have paid it off now, and we settled the non-federal student loan debt because there was no way I could pay for it as a young adult.) I managed to keep up with insulin, but this was before the prices skyrocketed thanks to Shkreli and his pharma bros.
I don’t actually know for sure. If I was uninsured, it would have been in my early 20s during the transition from living with my parents to living on my own. I had enough supplies to get me through any transition, though, because I do not remember any troubles trying to access supplies… but, back in that day, insulin was about $10/bottle and syringes weren’t expensive either. I didn’t use test strips of any kind… I’m not entirely sure how I survived!
I’ve been uninsured for long stretches of time. Up until my marriage in 1969, as an undergrad junior, I had coverage through my parents insurance. Insulin was still around $12 a vial, no prescription needed. I continued to see the same Internist at a discounted rate. With pregnancy the following year, received Medicare and California medical assistance that covered my medical/hospital expenses and continued with the inclusion of well-baby care. That was followed with a ten year period of sporadic medical care because I was “uninsurable”. Fortunately insulin was still nonprescription. I was employed at a variety of positions that did not offer health insurance. After getting divorced went to graduate school and had “basic” health coverage thru University Health. Still using vial and syringe, Regular and NPH, labs every 6 mo. Final year of grad school developed vision issues, misdiagnosed as stress/visual fatigue related. August, 1980 received MFA degree, moved to Madison, WI. Continued vision problems created transportation, employment search/applications issues. Child support payments stopped, applied/received AFDC with Medicare coverage. Visions issues dx as progressive diabetic retinopathy. Started receiving laser treatments in left eye, continued for next 5 years, legally blind in left eye. Seasonal employment mail-order company, no benefits. Using Medicaid coverage for 6 mo. Internist/lab appointment. Connected with CDE who saw me during her lunch hr., kept me supplied with insulin samples. Referred me to 2 yr. clinical study of Lantus insulin, included Endo appointments and labs. Started purchasing supplies and mail-order labs through eBay. Labor Day weekend, September, 2004 went to ER with acute abdominal pain. I immediately told triage that I had no insurance and that I was a T!D. For the next 11 hours was treated as a non-insulin dependent type 2 and given every lab and scan available, even though I continued to protest and announce that I was T!D and had no insurance coverage. Finally wheeled on a gurney to the OR by an anesthesiologist who continued to ask if I was taking a long list of type 2 oral medications. I kept saying that I injected insulin on a MDI schedule, that I was dx T1 in 1955. Made no difference to him or the surgeon. The next morning, minus an appendix that had been ready to rupture, I was able to call my beloved CDE at her home. Caught her just as she was walking out the door to go to her cabin in the north woods for the holiday. I told her what had happened, that I needed her to convince the hospital staff that I was T1 and needed insulin NOW! She asked who the surgeon was, I didn’t remember his name, just that when he had checked on me an hour earlier he was wearing a georgeous gold colored raw silk polo shirt. She correctly guessed his name. A moment after our call I heard her voice echoing down the hallway from the nurses station. She was loudly educating them on my need for insulin. After another full day in that hospital I signed myself out, feeling very lucky to still be alive. I was faced with an enormous bill. Just the hospital room was $9,000. It took 6 months and most of my savings to pay the portion of the final bill that they would accept. Since 2005 I have had insurance coverage through my partner, now my spouse’s employment.
Since I left active military service my jobs always offered health insurance, even before my T1d diagnosis (carpet cleaning, construction). Ironically never used it until I was diagnosed 25 years ago (my dogs plus the rescues saw their vets more than I saw a doc…24 total rescues).
Retired this year, made too much to use the VA hospital last “fiscal year” but the option was to work until 66 1/2 and buy a Medicare health plan, a year later use the VA-probably be crippled or retire now while I’m as healthy as I’ll ever be with no insurance, be frugal, and go to the VA with low copays. Retired this year now with no health insurance-“downgraded” my lifestyle: see my doc twice more this year; insulin and meds through Amazon (pens at $20 a piece but I use very little insulin am still active for an old guy), and the Libre3 through GoodRX ($90 with tax for two sensors today).
Was I less healthy might do differently but purposely chose jobs for benefits with insurance, only out of work maybe 3 days since a teen (milking and baling in school), worked minimum wage jobs/multiple jobs at a time several times. Last several a1C low 6’s, last one 5.8 (more time to emphasize it?), had employers look for me with job offers.
Grew up on a farm so no health insurance till I was 32.
This “eye of newt and tongue of frog” witch’s brew of health care called
The American Health Care system reeks with the malodorous meanderings of uncertainty, unavailability, and outright deprivation of health care at various stages of people’s lives.
It’s like playing darts blindfolded and hoping you hit the right number and not a bystander.
“Not to worry,” says Wall Street, Investment bankers, and credit default swap managers. After all, we’ll do fine in spite of what we do to hospitals, pharmaceuticals, drug stores, insurance companies, health care in general and you the individual patient.
Having read & replied to many of previous comments, let me reiterate, I feel your pain. If and when able, let us seek non-violent social justice by lobbying our legislators and congresspersons for Medicare for All. If it requires sit-ins, bring your diabetes kits, your supporters, attorneys, protein bars (Luna? Kind?), granola. Bring cameras for online pix at you know where. Someone, set the date.
I reused my needles and tried not to do much insulin
There was some problem transitioning to Medicare. We purchased a 6 month extension to cover me with current company. We paid monthly but someone dis allowed all coverage. I had surgery and getting supplies was hard. We ended up paying full price for everything during this time. We contacted a legal rep who had quickly changed our insurance companies mind. So glad we continued to pay the monthly premium. Made our case!! Hard time though.
I have been without insurance 3 times. The first time, I was taking MDI, so I went on the state insurance for people with low income (both my spouse and I were out of work at the time). This was before the Marketplace was created. The second time was very briefly waiting to hit the minimum # of days to be insured through work. The third time, during COVID, we got insurance through the Marketplace.
In each case, I had enough supplies on hand to get me through or I paid out of pocket if I ran out of something. If paying out of pocket, I utilized the discount program offered by the manufacturers of the products I use.
The cost of the insurance was higher than the cost of the prescriptions in the late 80’s early 90’s. I had a doctor who understood I did not have insurance and would call in prescriptions. This would never happen today. Not sure if it is laws, money, or fear of lawsuit’s that would not let a caring doctor help a patient in need. He has sense retired but was my doctor for as long as he was practicing medicine.
I had no health insurance for a few years in my early 20s — it would’ve cost me about $600 to get a private plan since my work as a personal trainer / freelance writer / bartender didn’t offer health insurance!
I survived thanks to several friends with T1D who had more insulin than they needed. I used the most basic MDI methods — no insulin pump (CGMs weren’t really a thing yet back then). And I got test-strips for a while through a sales rep at my gym who knew I didn’t have insurance. I also ordered test strips on Amazon for about 50 cents per strip, I think. Eventually, I started getting test strips from Diathrive which was AWESOME and so helpful. Grateful to have health insurance now!
Yes, health insurance became available about the mid 1970;s but was slowly applied to test tape, disposable needles and some co-paid insulins (up to a maximum # of units per month). Not many insurance companies had health care policies for diabetes.then except in eastern Canada (Toronto) so getting them was difficult. By the 1990’s most supplies, including test strips, disposable syringes and glucose meters were available in the larger cities in the west and north as well. Where I have lived throughout my life no insurance has ever paid for a full bottle of insulin.