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At T1D Exchange, we learn something new every day from our Online Community by asking a “Question of the Day.” As a person living with T1D or as a caregiver of someone living with T1D, you can learn valuable insights from the shared experience of others.
Consider inviting your T1D friends to join our Online Community so they can be part of a group that “gets it,” too.
Last month’s Top Questions:
- Since your T1D diagnosis, have you ever been without health insurance?
- Has your insulin ever accidentally frozen in a refrigerator?
- After having blood drawn at a lab, how do you review the results?
1. Since your T1D diagnosis, have you ever been without health insurance?
Here’s what our Online Community members had to say:
- “I had to switch to Medicare this year, and getting my supplies was very difficult. I was really stressed out for about a month while fighting the battles. It was a very disappointing experience!”
- “Recently laid off, and public insurance is very expensive. I have to ration my medication and might have to go back to syringes and vials. Very old school.”
- “Yes, both as an adult and as a child with T1D. It was both disruptive and expensive.”
- “Paying for insulin and day to day maintenance is not my main reason for wanting insurance. I am more concerned about the increased likelihood we all have of major health complications: kidney disease, cardiovascular issues, retinopathy, etc. Any of these could be impossible to afford in the US.”
- “I was without insurance for about 3 years. I didn’t get the annual exams I needed, like eyes or timely doctor’s visits. I had to pay for insulin, and CGM supplies out of pocket. I rationed other things to afford my insulin. It was about $450 a vial. I was grateful to get a job and have insurance coverage again.”
*Some comments are lightly edited for clarity.
2. Has your insulin ever accidentally frozen in a refrigerator?
Here’s what our Online Community members had to say:
- “I was on vacation away from home and did not realize that the refrigerator in my room was turned all the way too cold. My bottle froze overnight, and I had to find a pharmacy to get a new bottle. I found out later that it is a common practice for hotels to turn the refrigerator on at the coldest level to cool it quickly when you check-in. I now look to see where the refrigerator is set anytime I travel.”
- “Yes, a nightmare. I was out of state, but I didn’t as out of state the insurance ‘agent’ to let me have one vial. When I got the vial, I ended up in the emergency room because it took too long…so the insurance company paid for a day in the ER ALSO!”
- “Twice – both times in hotel refrigerators! I have Frio now to help me through any traveling woes. It goes through TSA beautifully. When I go to a hotel now, I put a glass of water in the refrigerator and wait overnight to see what happens. If there’s any ice in the cup in the morning, I either just don’t put my insulin in (leave it in the Frio) or, if the trip is longer and I’ll be there awhile, I find out how to and then turn down the refrigerator.”
- “I was in Ukraine for a 3-month tour with my band in East Africa and the Middle East. I accidentally put it on the top shelf, and it was one of those small refrigerators. It cut the strength almost in half, and I was nowhere near a major city.”
- “I think it was hurricane Michael, or Irma. My wife, in preparation for the hurricane, turned the freezer and refrigerator to very cold to keep the food cold longer if we lost electricity. I didn’t know that she changed the settings. All my insulin froze. It lost its potency. I had to throw all the insulin away and order a new supply.”
3. After having blood drawn at a lab, how do you review the results?
Here’s what our Online Community members had to say:
- “I receive a notification from the lab and my healthcare providers’ portals when my results are available to view. I do a preliminary view, and then at my next meeting, if there are issues, my doctor will either respond via the portal or call to discuss.”
- “The lab’s [hospital’s] online portal posts 80% of results within 24 hours or less. The other 20% are posted within 48 hours. Great speed and accuracy by those guys. Now if they could get away from the antediluvian practice of using primitive usernames and passwords.”
- “I have to phone my clinic for results.”
- “I greatly appreciate the convenience of having it all on my app! Small wins for T1D.”
We’re grateful for your contributions to the T1D Exchange Online Community. By openly sharing your experiences, you’re encouraging and supporting others who also live with T1D. Your voice matters, and we value your contributions to our Online Community.
If you are not already a member, simply click the “Join” button in the upper right corner of your screen!
Samantha Walsh
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2 Comments
Since your T1D diagnosis, have you ever been without health insurance? Cancel reply
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Yes! After completing graduate studies and trying to find work in a new state, new community while also dealing with the unexpected, sudden end of child support payments. It was a very difficult time.
Yes. I was diagnosed late in life and lost everything to medical bills. Lost my job, my carrer, no family and payed a ridiculous amount to get insulin. Everything I ever worked for went out they window when I got diagnosed. I hope other T1D’s didn’t have to experience that.