Does anyone self-fund T1D diabetes supplies and rx? I retired last year and pay full insurance premium of now $876/mo. DME is 20/80. Three tiers for pharmaceuticals and my insulins are at the top at $75/mo/rx. Premiums. Co-pays. Out-of pocket. Co-insurance.
Insurance denied my insulin and wants me to take “THEIR preferred insulin”. After 30+ days of dancing with my endo office and insurance, MannKind is helping out, but there is still no verdict.
I am going into my third or so year of T1D dx and understanding how we fight for what we need. I don’t want to fight for what I need. I pay a LOT for what I need. It turns out there is no RN, MD or insurance company who gives a crap what is good for me. It is what is good for them.
I have funds for about one more year in my HCSA to cover current premiums and out-of-pocket costs. I have about 2.5 years before age 62 and medicare and a supplement. I want to cancel insurance and use my HCSA to cover Afrezza, tresiba and Dexcom CGM until age 62. Anyone self-funding? Can I do this and stay afloat?
Just remember that you need insurance for more than the conditions you know about.
You also need insurance for something catastrophic that is unknown. The probability of such happening is of course quite small but if it does happen, you would want to have coverage for the best care possible.
I went through a similar thought process at the end of 2018 facing an unreasonably high premium for the following year. There are two parts to this problem.
First, medical emergency situations, it is not necessary ER, it might also be a visit to any doctor, where you will face a price tag of 200-350 per visit without insurance. Plus, the price of any emergency medication, which would be outrages. There are might be ways to cut these costs through various assistance programs and pharmacies abroad, but it all take time and it is not guaranteed.
Second part is everything related to diabetes and it is easily calculated. Injectable insulin is available through Canadian pharmacies at reasonable price. I am not sure about Affrezza though. Mannkind might have some assistance program. Test strips and Dexcom supplies are available through Ebay, Craigslist, Offerup. It doesn’t take long to find a box of sensors (G4 & G5) for 150, with some patience - even for 100. Receivers are abundant for 150-250. The problem is to buy a transmitter. They are pretty sensitive to expiration date unlike sensors, so not every one for sale is worth buying. G4 transmitters are hard to come by nowadays. G5s are more readily available and will cost 250-300. G6s are around 150-200.
I’ve been self funding for years but it is really hard to afford. I’m actually qualified for government programs this year so we’ll be seeing how that goes. I get 2 boxes of 4 unit cartridges of Afrezza for about $350 with Mannkinds discount card. Last I checked they still didn’t have a charitable foundation like the big insulin companies where qualifying patients can get it for free. Tresiba from Canadian pharmacies for $200, Libre sensors for $75, test strips and pen needles from Amazon. I also supplement the Afrezza with R from Walmart for $25.
The real problem you will be facing is Dr.s visits, blood work, and unexpected emergency medical costs. With your retirement do you qualify for subsidies through the ACA for insurance costs. Are you also dealing with a deductible? The way I have dealt with these things is denying most of the tests that my Dr.s have wanted me to do and I use a local clinic that is about $60 per visit if I pay upfront. With bare minimum blood work it usually comes out to about $60 as well.
If I weren’t really confident in my own knowledge of how to take care of my diabetes this program wouldn’t have worked for as long as it has but it can be done.
Turns out T1D dx hit about the same time as retirement. Maybeee… I could have stopped the train in motion… so many cogs in the wheel. An example of how healthcare in the US is out of touch with real life. Maybeee I could work until I die just for the healthcare benefits.
I understand the issue, I was diagnosed at 63 with out of control T2. Business was not great (commission based), but individual insurance was $2000 a month, so I kept working until the company collapsed, I was extremely fortunate in that I qualified for COBRA until I turned 65, and I started Medicare. Then I could start my own business again.
Lauri, I was in the same boat when I retired a few years ago and today I still have 3 years left before Medicare kicks in. I worked out a deal with my old company to keep working the minimum number of hours to qualify me for the company health insurance. In my case that is 17 1/2 hours a week, however when I do not have anything productive to do I am “on call” meaning for some of those 17 1/2 hours I can do retirement activities but am available to answer my phone, emails, etc. My productive time varies and I get paid extra for those productive hours which helps me cover all the co pays and nickel and diming the insurance company hits us with. This company insurance is worth keeping because the other insurance plans out there are not worth the expense, they have high deductibles and high premiums. There are no employee benefits to me like paid holidays, decent sized paycheck, etc. other than the company pays for the health insurance. I am convinced it is a win win for the company and me.
It is a small biz so there were lots of assurances I gave them, such as if my productivity slips and they are losing money on me in the future I would reimburse them for the premiums, etc. My goal has been to keep the deal in place until age 63 1/2, then go on Cobra for 18 months, then Medicare. The only thing I can see that might screw it up is if they sell the company, go out of business or something like that.
Maybe you can find a small biz or your old employer and suggest some kind of a deal to work a small number of hours, enough to get back on some employer provided health insurance? It’s way better than self funding anything with these high costs.
I kept the state plan from my former employer in MN. I’ve looked into my state’s exchange (WI) a bit and the premium would be equivalent. That scared me into deciding to keep what I have… there is comfort in the “known”. I didn’t delve into the details of coverage on the exchange/Badger Care.
I guess what I really want to know is how people self-pay for prescriptions and supplies. The recent difficulties I’ve had with insurance refusing to cover the insulin I prefer and trouble receiving CGM transmitters has me trouble-shooting. I cannot tolerate being told what to do by an insurance company whom I pay a considerable sum. Cash speaks.
Hmmm… I am sole proprietor of a small organic produce farm. It’s taken me quite a few years to get this set up. On the side I work very part time for my old employer, but sometimes they need me more. I can work 19.5 hours/week and still maintain my pension, but more then that and it will cause difficulties. The farm and my grandchildren are my real life and both those things keep me healthy. The University work causes my health to decline in more ways then T1D.
Your suggestions are great and I appreciate them. We all do what we do because it is right for us.
I am investigating ways to self-fund so that I will have the power to obtain what I need without ignorant insurance getting in the way. It may not be financially feasible, but I have not yet reached that conclusion.
I am willing to take the time to try and find a way to self-fund. It would be much more satisfying then fighting with an insurance company. Turns out having great insurance doesn’t guarantee I can obtain what I need to care for my health.
Whoops, yeah. Medicare at at 65. SS at age 62.
Getting some of my insulin from my northern neighbor is on the planning list.
NPR had a program on doctors that accept cash only and clinic visit fees were very reasonable. But as you have found, you can work with some clinics to pay cash. I see my endo at six month intervals. It should be workable to have a clinic visit at yearly intervals to keep the prescriptions flowing.
Lauri, I purchased my plan out of pocket when I came of age. I have had the same insurance policy my whole life. I will never get another plan as good as this one. Just to give some perspective during a time of frustration - my plan was purchased from my moms employer. She worked at a state hospital in MN for decades. I believe she had one of the best negotiated insurance plans known to man. (She was part of a giant state union.) You are paying $400/mo more than me in monthly premium. My deductible is currently $2,000. I also have 20/80 until I reach deductible.
I think you have a very good insurance plan, especially since your self employed. It would be reckless to let that go. That being said, I appreciate your frustration and it is valid. While considering this, ask yourself what you might loose if there is a catastrophic medical event and you need to file bankruptcy. As someone who doesn’t own anything, it wouldn’t really affect me. Your situation might be different.
Could you experiment with what its like to self fund by perhaps setting up an appointment at the Mayo? I feel certain that they could get you an Rx. They may not be able to do anything about your insurance coverage. I recommend this (even though it might be a $5,000 out of pocket experiment) because you sound like you might want to do business outside of the traditional clinic/insurance network. Sometimes its worth the money, just for state of mind.
As someone with a MN plan, it may be in your interest to write our state office and encourage them to keep moving forward on this effort. They may be willing to meet with you about your concerns.
Just for further consideration…worst case scenario - If you were to be rendered entirely destitute by medical bills, you probably want to be a MN resident, instead of WI. Thats one of my main reasons for not moving out of MN. I know that our current state plan for people with no assets and VERY limited income covers Dexcom CGM and some insulin pumps (including Medtronic). However, you are not eligible for that until you have been without a health insurance plan for 1 year. So, for most diabetics, we would be dead before that. You would need to self fund for one year (which I could never do). It is a very good, comprehensive plan, though. Also, one of the best in the state. However, you should still expect to need to fight with the insurance company. This is a fact of life for people with chronic conditions.
It often helps me to be reminded of just how bad things can get. It makes everything a little less frustrating. For that purpose, I relay the following story…
My best friend had undiagnosed bipolar disorder. He had managed to squeak by without any problems for ten years. (There are some questions in my mind about this, but that is most other people opinion of the circumstances.) When he got sick, I made every effort to get him medications. (It took me 3 or 4 years to convince him to go to the doc) It was very difficult to get him enrolled in a state plan and get a doctors appointment. When very limited appointments became available, it was very difficult to get him to attend (mostly, due to himself). I needed to escort him to appointments because he got super paranoid and really only trusted me (not the docs). After a year of psychosis, they managed to make a diagnosis and prescribe an Rx. It was a very expensive medication because previous ones hadn’t worked. ($1,000/mo) The state of MN plan refused to cover it.
Now, bear in mind, the circumstances surrounding their decision that the medication was not necessary. He was six foot four inches tall and 240 lbs. I am 5 foot eight and 160 lbs. I am his “handler,” because I am the only one that can get him to do anything, and it is VERY difficult and takes a lot of effort because he is delusional and believes that terrible things are going on around him. (to some degree that became true.) But, mostly, he is just terrified due to his illness and untreated psychosis. So, eventually, it is so bad that he is sitting upstairs at his bedroom window with a loaded hand gun pointed at every car that drives down the road. He writes down every license plate and is terrified of everything because of delusions. Sometimes I need to watch him every second of every day. I cannot leave him alone for fear that he will hurt someone. I am getting increasingly concerned for my own safety. One time he pointed his gun at me and started yelling. The police come almost every day due to one disturbance or another. He develops a habit of breaking glass in the street in front of his house in an effort to disable traffic. Sometimes, all day long, he sits in his upstairs window and throws breakable glass at cars as they pass and screams at them. The police decide that transport to the medical hospital is unnecessary. He accidentally lights himself on fire several times and gets terrible chemical burns from cleaning his house. I need to help dress and feed him because he has become so disabled by his illness. Once, five police show up with shotguns because a neighbor has made a report that they heard a gunshot. They are all pointing guns at him and his father and I are outside the house not knowing if he is alive or dead. I am come to the house day or night whenever I get a phone call and he is afraid or needs help. Eventually, I am there pretty much all the time. I can only leave for an hour here or there. Almost every other week, I drop off documented records via text messages of threats to kill himself, or me, or the neighbors, at the police department.
Insurance company verdict: medications unnecessary.
So, the state insurance plan determined it was better to put all their officers at risk of being shot dead, then cover some anti-psychotic medications. His doc fought it out with them and within a week he improved. Within two weeks to a month, he was his normal happy self, although, he was devastated by the events that had unfolded.
Lesson #1: Do not expect the insurance company to cover critical medications.
Lesson #2: Diabetes isnt that bad.
Lesson #3: Do not play Motley crue songs with the sound of gunshots in it, super loud while your in the shower because the neighbors and cops might think its real and show up with a bunch of shotguns and you’ll have to answer the door when they do.
Lesson #4: Unexpected medical crisis happens and no one will help you when it does. Everyone will wait too long to do anything.
@Lauri. If. You are a Costco member on Dexcom G6, they have a reasonable cash price for members. Canadian insulin. Ebay/Amazon test strips in larger lots, and syringes from Amazon ($13/100). A self funded pump program will be much more expensive than MDI.
Tim - That’s correct. Health Canada approval is needed for all drugs and medical devices before sales at the retail level. It normally takes 2-4 years to go through this process, even when the drugs or devices might be approved and used for years in both Europe and the USA.