I just joined today after looking for somewhere I could find help even if it’s just other people to commiserate with. My son was diagnosed with type 1 a little over a year ago. Our family was struggling financially already. I have been a teacher in Texas for 20 years. I have steadily seen the cost of my insurance rise to where I am bringing home less now than I was my first year. I have the best insurance that was available to me because the step down would mean an extremely high deductible before insurance pays anything. As school is starting soon, I checked to see if our premiums had increased which they have. I am paying a little over $2,000 a month now, and receiving less benefits than ever. Over half of my salary is going to insurance and my copays and deductibles pretty much eat up what is left. I am pretty much going to work to make sure my son lives. Every time I go to the pharmacy or order online supplies, I’m hit with some new injustice. This months it was the cost of pen needles as my free year of them has ran out from the discount card I am using for his insulin. I am now paying $60 a month for pen needles. One more nail in the coffin. We do not live extravagantly by any means. There is nothing left to cut out to ease the strain. I have worked hard my whole life, done things the right way, and sacrificed to keep my family afloat only to find that with a diabetes diagnosis, we cannot survive. I am wondering now if what I need to do is quit my job and sign up for every free government assistance there is to maintain a place in the world for my children. It’s especially frustrating because I worked and paid my own way through college. I fought hard to graduate with honors. I have years of experience at a job I love and am good at. I go to work everyday and give my all to help my students, but I can’t even help my own children at this point.
Welcome to TUD, @Dbryan! And hoo-boy that is SUCH a heart-rending rant. It is absurd that people still tout us has having the greatest health care system in the world, when even people who have decent employment are pushed to the edge of insolvency–and beyond–by the cost of treatments that have been around for decades. Hopefully some others here may be able to suggest some money saving options, though it looks like you’ve been pursuing that yourself.
In any case, glad you’ve joined us. We’re good at commiserating too!
Yes, I have explored every option that I can think of, talked to doctors, and even tried applying for CHIPS/Medicare. They just laughed at me because they only look at gross income. I take advantage of every discount card and coupon that I can find. It’s just a new reality for us that I’m sure many have dealt with for decades. For now, we keep the wolves at bay and pray that something changes soon.
You may want to consider paying out of pocket for all of your son’s medicines from Canada. That’s what I’ve been doing (at least for the medicines that are approved in Canada) and they are all less than half the cost of insulins here in the states.
Also all of the major insulin manufacturers have charitable organizations that you can apply for that will give you insulins and pen tips, etc. for free for one year and you can reapply the next year. I think Sanofi and Novo Nordisk have a cut off of 300% over the federal poverty level as long as you are not on government assistance.
@Dbryan unfortunately our Texas representatives are not interested in improving the healthcare situation in Texas. They also have little interest in improving the educational system.
I do understand your frustrations. It makes me so angry when I think of how much time & energy I’ve had to devote each year since my daughter’s dx to navigating the health insurance waters & trying to find a way to stay afloat financially. Four years ago I realized the only affordabble way to maintain decent coverage for my daughter was to remove her from our employer-sponsored plan. (When your health insurance plan comes with free legal services it’s a sure sign it’s a worthless plan.) We now purchase an individual plan for her through the marketplace. The first year, we paid less than 1/3 the cost of monthly premiums than through my husband’s employer. The premiums have continued to rise of course, & last year there was an even steeper rise as she aged out of pediatric coverage (she’s now 20), but she has excellent coverage at a savings of $250/month for us this year. This is without subsidies. It may or may not work for your family, but it’s something to consider. The plans offered in our area through the federal marketplace are sometimes better than what’s available directly through the insurer, but not always. I always compare the offerings.
A couple of things we’ve learned:
Many of the copay discount cards are renewable. We haven’t paid a full copay on insulin in 9 years.
Except for supplies requiring a prescription, we order online & avoid the insurance copay. My daughter is on a pump but we keep Levemir pens for backup & for the occasional break back to MDI. I paid $10 for the last box of pen needles, as opposed to the $35 insurance copay. Programs such as One Drop (we haven’t tried it) & the mySugr bundle (we’ve been using this for 2 months) may save you a bit on test strips.
Could you move to Minnesota? With all your experience, I would think you could find a job and receive better benefits. My mom worked for the state when I was diagnosed and always believed that we were extremely lucky. She said that if we just hadn’t happened to have a spectacular medical plan at that moment, we would have been in real trouble.
Housing is a mess here right now. One bedroom apartments are going for $1,000 per month. But, you would have better luck with housing costs outside of the metro. They are always in need of teachers in rural counties. You would also need to re-up your teaching license, I believe. MN standards are a bit different than other places. Taxes are high, but it might work better for your situation.
Looks like entry level pay is about $30,000. Up to $75,000. But, you would be in this for the medical benefits, which are good. If your kid ever goes to college, you want him to take a good health insurance policy with him. Thats important. Also, if he doesn’t go to college or has trouble getting by, the state health insurance is among the best you can get. If he is unemployed as a young man, he would still have access to an insulin pump and other good devices. No matter what happens, your state of mind will be much better knowing he has access to care.
Note: If you haven’t applied for work in a while, be prepared to send a LOT of CV’s. If you start now, you will have a good feel for the market by the end of the school year. I believe the highest levels of need are in Wilmar, MN and on the Indian reservations. I knew entry level teachers who took jobs there for tuition forgiveness. But, you are experienced and kinda unique (being from texas), so you shouldn’t have any trouble.
We have a highly educated workforce. Many teachers have masters degrees because their jobs tend to pay their tuition to get a masters, which bumps up their salaries. If that interests you, St Cloud, MN has a state teachers college and a demand for teachers in the public schools. Other college towns include: Mankato, Fargo-Moorhead, Duluth (which is stunningly beautiful), etc.
Move to Tennessee, there’s Tenncare. It pays for everything. But it is still a “means tested program”, meaning that you must “spend down” to the allowable level and only then will they cover everything.
I’m going to propose something a little radical. It doesn’t get talked about much, but there are people out there doing it — reusing stuff to get the most mileage out of it. You mentioned paying $60 a month for pen needles. I use humalog pens to cover my meals and make corrections. I don’t put a fresh needle on every time I take a few units. I’d be using the needles up pretty fast that way. I put a needle on the pen and leave it there, sometimes for days. I can make a box of pen needles last a year. As long as the needle touches only me and nothing else, I’m good. If I were to drop it or let it touch something that wasn’t clean, then I change it. You also don’t have to prime the pen after the first shot. The insulin is already in the needle and ready to go. You can save several units from being wasted if you don’t have to prime for every shot.
I also don’t use alcohol preps. I use the same lancet more than once. As long as I’m working with clean hands and don’t let the points touch anything but me, I’m ok.
The same goes for syringes. I can get several uses from them. Injections go into a place that’s always covered with clothing and not exposed to the outside world. So it’s a safe bet to be a pretty clean surface.
I have been doing this for more than 30 years and have never had one problem with it. It’s a tip I read in a diabetes book when I was first diagnosed. It’s not for everyone so I can understand some people might not want to take care of themselves this way, but I have found it to work for me.
It cuts the costs and cuts down on the amount of medical waste I generate.
Again, it’s not for everyone but it has worked for me.
We have been reusing some supplies and will probably resort to reusing pen needles. It just makes me irate when heroin users are given needles for free. How is this the country we live in?
As far as moving, it’s not an option as I am the only child of my 82 year old father who lives next door to us and relies on us.
I have also looked into buying insurance on my own from the market place for just my son instead of going through the school district that I work for, however it wouldn’t make sense because I am charged as employee and family and since I have other children, for them to have insurance, my son with diabetes has insurance as well. It’s like banging my head on a wall. I realize there are probably no solutions, we will just keep living day to day hoping we can buy the next round of prescriptions as well as put food on the table and a roof over our head.
Compared to neighboring states, Texas pays their teachers pretty well, however the cost of insurance is outrageous and seldom even debated. I believe many teachers are able to rely on their spouse’s company insurance. Very few teachers I work with even carry the insurance provided through the school. Because my husband also has a chronic illness and is self employed workimg out of our home, this is not an option for us.
Does anyone know of a company that has spectacular insurance that would see fit to hire someone like me with a teaching degree and 20 years experience? I would hate to give up on this wonderful career, but it has proven a bitter pill to swallow thinking of starting a new school year when I cannot even provide the basic supplies needed for my own children to return to school.
Just curious, but have you studied the high deductible plan? A lot of them come with Health Savings Accounts and many employers put seed money in them at the beginning of the year. I have one and thought it would be terrible when we switched over to it but it has worked out fairly well for us. It’s cheaper than the PPO and the money I save I put back into the HSA. While it is a little tough until the deductible is met it seems to be better for us.
Be sure to ask the pharmacy if they know of any coupons. I had no idea about them and before I paid one day they asked me to step aside. They gave me a web address for a Novalog coupon and all I had to do was take a screenshot of it to use it. But now that my deductible has been met it really isn’t much of an issue, most of the time a 00 day supply is less than $100 and I am around $100 away from hitting my “out of pocket” before insurance pays 100%.
This high deductible plans can look intimidating but all of them are not bad. And I might add it’s a shame teachers aren’t paid what they are worth. It’s the same way here in Florida.
Because school districts are non profit organizations, they don’t put seed money in anything-retirement plans or insurance. I do have the discount cards. Believe me when I say we would not be able to afford even one month of insulin without them. When we were headed home from spending a week in the hospital upon my som’s initial diagnosis, I called the pharmacy to see how much his prescriptions were going to be which was over $2,000. I went in the bathroom and quietly cried wondering how to tell the hospital I couldn’t possibly take my son home because I couldn’t afford to keep him alive. Because none of his prescription are generic our insurance only pays 40% of them. Without the discount cards, all would be lost. Even with them, we still spend close to $600 a month on combined supplies and insulin in additional to a little over $2,000 on insurance premiums. The plan that our school offers with a high deduction that needs to be met before they pay, has a $14,000 deductible to be met. It is not an option.
The healthcare situation in this country is shameful. I remember the look of pity on the pharmacist’s face when he told me the total for my daughter’s first prescription fill. $1700 poorer & a half hour of crying alone in my car, I couldn’t see how we could ever afford to keep her alive. I’m thankful she’s our last child at home because my older 2 also have health issues.
Over the years we’ve been fortunate to have a small circle of fellow T1 families as friends. When someone comes up short, we share supplies. They’ve bailed us out many times, & we’ve returned the favor There are also pay it forward groups on Facebook with many kind-hearted & generous members willing to help. I would be glad to direct you to the group I’m in via private message if you’d like.
I’m not sure if it helps any, but you’re not alone. This boat is pretty full & taking on more all the time.
@Dbryan, you might also look at Amazon for pen needles. They generally run ~$11/100. I can buy 7 times more on Amazon than my insurance copay. Ebay and Amazon are also a good place to purchase test strips. Just be careful and watch the dates, you don’t want anything too old. In a pinch, Walmart has regular and nph insulin for $25/10ml vial. It’s not fancy, and it’s way more work than Humalog /novolog and Lantus /tresiba, but you can get by with it. Make sure you do your research first or speak with your endo before using the older analog insulins.
As stated previously copay cards an be re-applied for every year. Also take a look at the payment tiers your rx items are on. Sometimes a tier 3 item with a copay card is actually cheaper than a tier 1 item on the health insurance formulary.
Diabetes is an industry much like weddings are. Sadly we are the host that the parasitic diabetes providers feed on. Moo.
Please reach out if you need more suggestions our resources. Collectively the members of this blog have generations of experience.
Thank you! I will defiantly look into the Amazon option. I’ve already asked my son’s doctor about the cheaper Walmart versions but those are not avenues she supports especially for kids.
Yes, the pharmacist was the one who found discount cards for me. The hospital acted like it was ridiculous that I couldn’t afford the prescriptions. I even remember my husband trying to get them to give us an extra monitor to leave at school, and the intern refused and tried to tell us she knew how financially difficult life was being an intern. I wanted to scream at this young girl with her whole life ahead of her and a high paying job in the horizon and tell her she had no idea what it was like for families like mine! Thanks for understanding. And I know there are a lot of great people out there willing to help. I just want a permanent fix because this is never going away!
That intern is a piece of work! They get those meters free, just like all the other samples. My daughter’s ped endo clinic supplied us with most of our meters without us even asking.
Until a couple of years ago you could request free meters on the manufacturer’s websites. Now, the ones that still offer have you print off a coupon to take to the pharmacy.
I sort of agree about using the older insulins in kids. My daughter started on a regimen of Novolog, Levemir & NPH. NPH is unpredictable. You can find tons of posts here from users who hated it. It served its purpose for us during a strong honeymoon (no need for a lunch shot at school), but we had some scary times.
I think we would all love to see the situation change. A cure would be awesome, but being able to live without the constant financial worries would be a close 2nd. Back when we were new, someone called T1 the rich man’s disease. They were right!
Dbryan, please email me at firstname.lastname@example.org. I haven’t figured out if there is a way to send a personal message on this forum.
Good thinking, Mohe….Oregon also has subsidies that can help folks with chronic illnesses…Worth a thought…
To Private Message someone click on their avatar and you will see a message button to press. Please never put your private email on an open forum like this one, it is not safe to do so.