Son diagnosed with Type 1 Diabetes - how prepare for future?

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JV
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Son diagnosed with Type 1 Diabetes - how prepare for future?

Post by JV »

Our lives were flipped upside down about a month ago when my 17yo son was diagnosed with Type 1 Diabetes. It's been a whirlwind since then getting a crash course in how to manage this. DW & I have stable jobs and excellent benefits, so we are very lucky. We are blown away by what the total retail monthly cost of his diabetic supplies would be without benefits. I'm looking for some advice as to how we could prepare financially for his future. He has a 529 if he chooses to go to college so that is as set as I want it. Our concern is primarily his health insurance options when he turns 26 and either can't be on our policy any longer or when he goes out on his own. Obviously we've no clue what the future will bring when it comes to legislation or his personal situation, but is there anything we could explore doing now, be it insurance/disability policy-wise or financially? I was considering opening a custodial Roth IRA for him (I have a separate thread about this, and the responses were very helpful, but then the diagnosis hit), and now I feel opening that up and funding it for him is now even more important. He'd be able to use the contributions, if absolutely necessary, in a pinch for medication, etc., down the road. Anything else we can do?
Katietsu
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Re: Son diagnosed with Type 1 Diabetes - how prepare for future?

Post by Katietsu »

Good news is that it is a manageable disease that has a great chance of a cure in your son's lifetime.

Health insurance in the US is crazy enough to plan for next year let alone 9 years from now. I do believe that even if some of the protections and programs currently offered disappear nationally, that they will remain in some states. So, my back up plan would be geographic arbitrage if necessary.

Hopefully, life insurance will be irrelevant. However, life insurance now might be something to consider. My husband can purchase life insurance for dependents 26 and under for a very reasonable price through his job. That policy can be converted to an individual policy once the dependent is no longer eligible under the family plan. I do not know much about the broader market, but I would not be surprised to find that there were policies that a 17 year old might get with guaranteed issue that a 18 year old could not.
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Re: Son diagnosed with Type 1 Diabetes - how prepare for future?

Post by Jack FFR1846 »

Our son was diagnosed at 16. He's 24 now with a bachelors degree in engineering from a very difficult college. So I'll say that it won't really slow him down all that much.

On the insurance front, we've been through it all. You'll want to stay on top of the companies. Ours has the "regular" medical part with another company covering the prescriptions. Beyond that, if he goes on a pump or continuous glucose monitor, that will likely be farmed out by the drug provider. You may be forced through a distributor. Covered brands can change year to year. If at all possible, get your questions answered by email or in another way in writing, which some won't do. Keep a log with names of people you talk to. I'm making it sound like this is a lot of work. It is. My wife is in the business and spends hours on the phone with insurance, distributors, manufacturers. Also, all of these things break. Immediately call the tech support. The warranties tend to be good and you'll have a new pump in less than a day from across the country. The CGMs stop working. Call them to get a replacement. They'll send a pre-paid box to send back.
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Re: Son diagnosed with Type 1 Diabetes - how prepare for future?

Post by niagara_guy »

Please PM me. I will share my experience.
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Re: Son diagnosed with Type 1 Diabetes - how prepare for future?

Post by Teague »

As an aside you might check out the story of Sonia Sotomayor, a type 1 diabetic who grew up with very limited financial resources and other significant disadvantages, now Supreme Court Justice. Many other similar stories out there. Just FYI.
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Re: Son diagnosed with Type 1 Diabetes - how prepare for future?

Post by runner3081 »

Teague wrote: Fri Nov 27, 2020 4:14 pm As an aside you might check out the story of Sonia Sotomayor, a type 1 diabetic who grew up with very limited financial resources and other significant disadvantages, now Supreme Court Justice. Many other similar stories out there. Just FYI.
Agree, though not the limited financial resource piece, but Mark Andrews of the NFL Baltimore Ravens is doing well with his Type I disease.

https://www.baltimoreravens.com/news/ha ... rk-andrews
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JV
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Re: Son diagnosed with Type 1 Diabetes - how prepare for future?

Post by JV »

Thank you for the kind responses. We've been overwhelmed with support from both folks we know and the online community. It's odd, people seemed to come out of the woodwork when we told them of the diagnosis: they either were Type 1 themselves or knew someone close to them that was. He is on a Dexcom G6 continuous glucose monitor, so other than not quite trusting the readings 100% of the time (more like 75%), we at least know where he is throughout the day and can plan accordingly.
Jack FFR1846 wrote: Fri Nov 27, 2020 4:01 pm On the insurance front, we've been through it all. You'll want to stay on top of the companies. Ours has the "regular" medical part with another company covering the prescriptions.
Ours is the same. My wife has taken the brunt of dealing with the various companies, but so far we're finding everything is properly covered.

As for finding out about others with Type 1, I did read about Sotomayor, and I was watching the Ravens game last week when Chris Collinsworth said the word "diabetes" which caught my attention. I rewound it and he told the story of Andrews. Pretty amazing.

Anyone else have any financial suggestions: life or disability insurance, Roth IRA, separate savings plan of some kind, gifting him money every year to plan ahead?
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Re: Son diagnosed with Type 1 Diabetes - how prepare for future?

Post by LadyGeek »

This thread is now in the Personal Finance (Not Investing) forum (financial planning).
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Normchad
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Re: Son diagnosed with Type 1 Diabetes - how prepare for future?

Post by Normchad »

I’ve been dealing with this for forty years now. A cure is always five years away......

I can’t give you medical advice here of course.

Financially, oh man. I’ve got very good insurance, and I still pay an absolute fortune every year. I have no idea how people with typical US incomes can afford it. I have considered driving to Canada to buy insulin......

My life insurance policy is 6x the price of my wife’s policy......

The thought of losing health insurance coverage is a huge fear of mind. It scares me more than the diabetes and potential complications do.

Now for the good news. The recent advances in diabetes management have been truly remarkable. It is much easier now to reasonably control it than it used to be.
Last edited by Normchad on Fri Nov 27, 2020 7:15 pm, edited 1 time in total.
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arcticpineapplecorp.
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Re: Son diagnosed with Type 1 Diabetes - how prepare for future?

Post by arcticpineapplecorp. »

not sure what state you live in but in some states kids can qualify for medicaid with a disability (I know he's not disabled but this means a health condition that requires medicine for example) up to 18 and regardless of whether their parents have insurance (medicaid becomes the secondary that covers anything uncovered by primary insurance). I know he's almost at 18 but then there's also expanded medciaid (depending upon your state) for 18+ (income dependent but no resource limit). Finally there may be a type of medicaid for workers (if/when he's working) with health conditions (there are income limits and resource limits for these programs).

If you tell us what state you're in we could look it up to see if he might qualify for some of these programs.
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JV
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Re: Son diagnosed with Type 1 Diabetes - how prepare for future?

Post by JV »

arcticpineapplecorp. wrote: Fri Nov 27, 2020 7:15 pm If you tell us what state you're in we could look it up to see if he might qualify for some of these programs.
NY
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arcticpineapplecorp.
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Re: Son diagnosed with Type 1 Diabetes - how prepare for future?

Post by arcticpineapplecorp. »

looks like they participate in the expanded medicaid:
https://www.google.com/search?client=fi ... d+medicaid

so depending upon his income when age 18, if he makes $16,753 or less annually, he could qualify for the expanded medicaid as a household of 1 (not counting parents income).

there is medicaid for disabled folks, but he would need to qualify for medicare (i.e., be on social security disability for at least 2 years at which point social security disability recipients qualify for medicare). Don't think that sounds like his situation though.

there's also chip (up to age 18) but if he's eligible for insurance under his parents, that'd be a no-go. Chip is only for those who don't have access to insurance I believe (but are over income limits for medicaid).

doesn't look like nevada has a program for workers with disabilities like some other states have (with higher income/resource limits).

So best bet would be applying for expanded medicaid provided his income is $16,753 (2020 FPIG, increases annually) once he's 18 and older. If he's making more than that, he'd be on your insurance until 26 or go on the federal marketplace exchange (and possibly qualify for a subsidy depending upon his income, known as an advanced premium tax credit or APTC).

hope that helps.

there are also prescription assistance programs (check with your doctor) and goodrx.com to get lower cost meds.

for emotional support and other ideas, check local social media and JDF and ADA groups.
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Re: Son diagnosed with Type 1 Diabetes - how prepare for future?

Post by bayview »

arcticpineapplecorp. wrote: Fri Nov 27, 2020 8:01 pm looks like they participate in the expanded medicaid:
https://www.google.com/search?client=fi ... d+medicaid...

doesn't look like nevada has a program for workers with disabilities like some other states have (with higher income/resource limits).
I think OP is in New York (NY), not Nevada.
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Re: Son diagnosed with Type 1 Diabetes - how prepare for future?

Post by magazinewriter »

Teague wrote: Fri Nov 27, 2020 4:14 pm As an aside you might check out the story of Sonia Sotomayor, a type 1 diabetic who grew up with very limited financial resources and other significant disadvantages, now Supreme Court Justice. Many other similar stories out there. Just FYI.
I’m not diabetic but I found her book inspirational. She came from real poverty but was lucky that her mother was a nurse but still, as I recall from the book, learned to give herself insulin when she was only nine years old.
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Re: Son diagnosed with Type 1 Diabetes - how prepare for future?

Post by arcticpineapplecorp. »

bayview wrote: Fri Nov 27, 2020 8:36 pm
arcticpineapplecorp. wrote: Fri Nov 27, 2020 8:01 pm looks like they participate in the expanded medicaid:
https://www.google.com/search?client=fi ... d+medicaid...

doesn't look like nevada has a program for workers with disabilities like some other states have (with higher income/resource limits).
I think OP is in New York (NY), not Nevada.
:oops:

time to get the 'ol eyes checked out.
fortunately NY expanded medicaid too!

also for $20 a month they have an essential plan for a single person with income up to $25,520 (for people who have income above the expanded medicaid limit previously mentioned):
https://info.nystateofhealth.ny.gov/sit ... heet_3.pdf

there's also a qualified health plan for individuals up to $51,040 (cost sharing):
https://info.nystateofhealth.ny.gov/sit ... lish_1.pdf
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Re: Son diagnosed with Type 1 Diabetes - how prepare for future?

Post by Watty »

JV wrote: Fri Nov 27, 2020 3:34 pm Our concern is primarily his health insurance options when he turns 26 and either can't be on our policy any longer or when he goes out on his own. Obviously we've no clue what the future will bring when it comes to legislation or his personal situation, but is there anything we could explore doing now, be it insurance/disability policy-wise or financially?
I am not an expert so you would want to verify this but as I understand it when a child turns 26 they are then eligible to use COBRA for 18 months and a few states have extended COBRA to 36 months but they may call it something else. A very cursory search looks like NY is one of these states.

https://www.dfs.ny.gov/consumers/health ... _36_Months

If something happens to the ACA and he is not employed in a job where he gets health insurance it looks like if he needed to he could probably use COBRA until he is 29.

That would of course require playing the separate COBRA premium after the age of 26 but at least it could act as a safety net so he does not end up without health insurance.

It is also possible to do "serial COBRA" since there is no length of employment requirement to qualify for COBRA once your get on your employers health insurance. I know someone that was retired and diabetic(40+ years) who was concerned about the future of the ACA. He had been retired for a few years so he got a new job where he could get health insurance. He worked there for less than six months then retired again when he was 63.5 so 18 months of COBRA would last until he would be 65 and on Medicare.
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Re: Son diagnosed with Type 1 Diabetes - how prepare for future?

Post by JV »

Can't thank you all enough for the advice here. As always, the BH folks come through. Aside from medical insurance, would anyone recommend anything else from a financial perspective? As I mentioned above, I was thinking about funding a Roth IRA for him based on his yearly earnings. He and I would work together on it from an educational standpoint, but if I funded a portion of it, I figure he could use the contributions in a pinch later on if truly necessary. I also figure, provided my wife and I are doing well down the road, we could help him fund his medical insurance/Cobra or whatever he needed at the time to have decent medical coverage until he is doing well financially himself, or with a job with solid benefits. There's obviously going to come a point where he needs to stand on his own, and believe me I do get that, but I figure whatever I can begin doing now to give him a leg up would be something to consider.
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Re: Son diagnosed with Type 1 Diabetes - how prepare for future?

Post by Normchad »

My biggest suggestion, is to try to steer him down a path where he will have access to health insurance. White collar work, possibly a government job.

Personally, I’m a fan of what you suggest for funding a Roth IRA for him. I do this for my kid as a gift to her.
Last edited by Normchad on Fri Nov 27, 2020 10:27 pm, edited 1 time in total.
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Re: Son diagnosed with Type 1 Diabetes - how prepare for future?

Post by Tamarind »

Helping him fund a Roth to the limit of his income is a great idea, though it applies to all minors.

Some specific advice is that, unlike the average person, employer ltd and life insurance coverage may be very important for him, because he'll be able benefit from guaranteed issue.

More than average he will want to examine the benefits of potential jobs, not just salary, and think carefully when changing jobs about how to preserve continuous coverage.
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Re: Son diagnosed with Type 1 Diabetes - how prepare for future?

Post by lakpr »

Normchad wrote: Fri Nov 27, 2020 10:08 pm My biggest suggestion, is to try to steer him down a path where he will have access to health insurance. White collar work, possibly a government job.

Personally, I’m Avant of what you suggest for funding a Roth IRA for him. I do this for my kid as a gift to her.
This!! Steer him towards government jobs, that have reasonable security and associated medical benefits. Teachers, law enforcement, criminal justice system, urban planning, etc. The private world is very unkind, no job security, and that in turn means a job loss is a double whammy with a chronic illness like Type-1 Diabetes.

Age 17 means he is getting ready to enter college within an year or two, so picking up a proper major now is going to be truly a life time commitment
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Re: Son diagnosed with Type 1 Diabetes - how prepare for future?

Post by lazynovice »

Having a family member who did a poor job managing their Type 1 diabetes in college when mom was not around to help, I’d recommend TUITION INSURANCE at least the first semester of college. Our family member was hospitalized several times in the first year and had to withdraw one semester. Other friends are keeping their son with Type 1 home to attend community college. Some people manage very well, but not all do.

Colorado passed a law last year limiting the amount of out of pocket insurers can require for insulin each month. Lots of loopholes but you might look at other states who have done the same and either encourage him to live in one or advocate for such a law in the state he chooses to live in.
Last edited by lazynovice on Fri Nov 27, 2020 10:49 pm, edited 1 time in total.
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Re: Son diagnosed with Type 1 Diabetes - how prepare for future?

Post by strafe »

JV wrote: Fri Nov 27, 2020 3:34 pm Our lives were flipped upside down about a month ago when my 17yo son was diagnosed with Type 1 Diabetes. It's been a whirlwind since then getting a crash course in how to manage this. DW & I have stable jobs and excellent benefits, so we are very lucky. We are blown away by what the total retail monthly cost of his diabetic supplies would be without benefits. I'm looking for some advice as to how we could prepare financially for his future. He has a 529 if he chooses to go to college so that is as set as I want it. Our concern is primarily his health insurance options when he turns 26 and either can't be on our policy any longer or when he goes out on his own. Obviously we've no clue what the future will bring when it comes to legislation or his personal situation, but is there anything we could explore doing now, be it insurance/disability policy-wise or financially? I was considering opening a custodial Roth IRA for him (I have a separate thread about this, and the responses were very helpful, but then the diagnosis hit), and now I feel opening that up and funding it for him is now even more important. He'd be able to use the contributions, if absolutely necessary, in a pinch for medication, etc., down the road. Anything else we can do?
A whirlwind, yes, but one that your son can manage without letting it define him.

The most important thing you can do for your son is to help instill in him a sense of ownership and motivation to manage this illness himself as he transitions into adulthood. He needs to be the one asking the questions at the doctor visits, diabetes educator meetings, financial planner, etc. His engagement now will determine the arc of his life. Many well meaning parents do their teenagers a long term disservice in “taking over” management of their medical & personal affairs in the face of a serious chronic illness, stunting their maturation and participation at a time when it is most needed. I have no reason to assume that is the case here, but I offer this as a caution.
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Re: Son diagnosed with Type 1 Diabetes - how prepare for future?

Post by Savvy »

A very close family member has it in my family. My advice is for him to invest in his health by taking care mentally and physically. That's the best financial investment. You can of course help him through it if it's looking like life is getting too stressful.
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Re: Son diagnosed with Type 1 Diabetes - how prepare for future?

Post by Savvy »

strafe wrote: Fri Nov 27, 2020 10:40 pm
JV wrote: Fri Nov 27, 2020 3:34 pm Our lives were flipped upside down about a month ago when my 17yo son was diagnosed with Type 1 Diabetes. It's been a whirlwind since then getting a crash course in how to manage this. DW & I have stable jobs and excellent benefits, so we are very lucky. We are blown away by what the total retail monthly cost of his diabetic supplies would be without benefits. I'm looking for some advice as to how we could prepare financially for his future. He has a 529 if he chooses to go to college so that is as set as I want it. Our concern is primarily his health insurance options when he turns 26 and either can't be on our policy any longer or when he goes out on his own. Obviously we've no clue what the future will bring when it comes to legislation or his personal situation, but is there anything we could explore doing now, be it insurance/disability policy-wise or financially? I was considering opening a custodial Roth IRA for him (I have a separate thread about this, and the responses were very helpful, but then the diagnosis hit), and now I feel opening that up and funding it for him is now even more important. He'd be able to use the contributions, if absolutely necessary, in a pinch for medication, etc., down the road. Anything else we can do?
A whirlwind, yes, but one that your son can manage without letting it define him.

The most important thing you can do for your son is to help instill in him a sense of ownership and motivation to manage this illness himself as he transitions into adulthood. He needs to be the one asking the questions at the doctor visits, diabetes educator meetings, financial planner, etc. His engagement now will determine the arc of his life. Many well meaning parents do their teenagers a long term disservice in “taking over” management of their medical & personal affairs in the face of a serious chronic illness, stunting their maturation and participation at a time when it is most needed. I have no reason to assume that is the case here, but I offer this as a caution.
Really well said! This comment is better than mine. (:
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Re: Son diagnosed with Type 1 Diabetes - how prepare for future?

Post by IMO »

JV wrote: Fri Nov 27, 2020 9:47 pm Can't thank you all enough for the advice here. As always, the BH folks come through. Aside from medical insurance, would anyone recommend anything else from a financial perspective? As I mentioned above, I was thinking about funding a Roth IRA for him based on his yearly earnings. He and I would work together on it from an educational standpoint, but if I funded a portion of it, I figure he could use the contributions in a pinch later on if truly necessary. I also figure, provided my wife and I are doing well down the road, we could help him fund his medical insurance/Cobra or whatever he needed at the time to have decent medical coverage until he is doing well financially himself, or with a job with solid benefits. There's obviously going to come a point where he needs to stand on his own, and believe me I do get that, but I figure whatever I can begin doing now to give him a leg up would be something to consider.
When it comes down to it, doing things like helping by finding a Roth IRA on his earnings, making sure he is smart about a college major/degree and the educational costs/loans is a great help for any young adult, no matter if they have a medical concern or not. With any diagnosis that can be used to raise premiums for things like life insurance, it probably makes the most sense to always try to obtain coverage when one is relatively younger to keep premiums more reasonable. I know we could obtain life insurance as a rider for our teenager right now without any medical exam, if we desired (that's a debatable topic in itself).

Without giving medical advice, guiding/helping someone have a successful career and a personal desire for a high level self responsibility is important especially when it comes to medical conditions that require good compliance. Hopefully you've instilled good values that mean a young adult won't get distracted from drugs/alcohol while at college because those things can be obstacles to complying with regular self care. Sometimes it means counseling a child who may have had military aspirations that a military career is probably not in the cards, nor are some career fields (such as an airline pilot). Don't underestimate those things for some young individuals because their career aspirations may have just gotten shot down.

Take care of your own personal lives/finances well so that in the future you would always be in a better position to help an adult child and your adult child won't feel the necessity in the future to help out his/her parents.

And FWIW, I've known/been aware of a number of Type 1 diabetics that were very successful in life, including competitive sports. Wish him/the family best of luck.
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Re: Son diagnosed with Type 1 Diabetes - how prepare for future?

Post by GlacierRunner »

strafe wrote: Fri Nov 27, 2020 10:40 pm
A whirlwind, yes, but one that your son can manage without letting it define him.

The most important thing you can do for your son is to help instill in him a sense of ownership and motivation to manage this illness himself as he transitions into adulthood. He needs to be the one asking the questions at the doctor visits, diabetes educator meetings, financial planner, etc. His engagement now will determine the arc of his life. Many well meaning parents do their teenagers a long term disservice in “taking over” management of their medical & personal affairs in the face of a serious chronic illness, stunting their maturation and participation at a time when it is most needed. I have no reason to assume that is the case here, but I offer this as a caution.
+1! great advice! I would not be too worked up about providing financially throughout adulthood. Like other young people with chronic illness, he needs to be empowered to advocate and care for himself.

[Medical advice removed by moderator oldcomputerguy]
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Re: Son diagnosed with Type 1 Diabetes - how prepare for future?

Post by Dfree »

Hi. I'm type 1 and 40-years-old. I'll speak to financial considerations, since that is what you asked. It's all about insurance, as you know. My insurance through a private sector job is good, not great.

But the job is steady. I've ridden it through two recessions now. Keeping insurance is more important than seeking new jobs for small pay and prestige bumps. It's more important than following an entrepreneurial calling. I have a side hustle I love, but I cling tenaciously to the job with benefits.

It's hard for a young person to understand that, but it is important to accept unless the insurance options change. STEADY insurance coverage must be primary factor when planning for a diabetic's future.

My second piece of financial advice is to hammer home the importance of a solid emergency fund. I keep a full year's earnings in the bank. If I wasn't debt free and holding some investments in a taxable account, I might want even more banked. For folks who need expensive medication and equipment, this is not optional.

If I were a parent of a type 1, I would keep an emergency fund just for the kid as long as I'm alive. I wouldn't tell him about it and teach him to build his own. Not necessary. But, man, I would sleep better.

Non-financial -- this is scary now. But it gets easier fast. It'll probably be harder on you than the kid. This disease makes a young person get serious about health. I would be LESS healthy if this didn't focus me at a young age.

Sounds like you are already doing great. Best wishes to you and your family.
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Re: Son diagnosed with Type 1 Diabetes - how prepare for future?

Post by galawdawg »

One thing to check with insurers about is the availability and coverage of a diabetes management program. While benefits vary, many insurers who offer such a program will waive some, if not all, co-payments and deductibles relating to management of diabetes (insulin, CGM supplies, pump supplies, etc) when the person participates in the program. Typically, that involves a regular call from a diabetes health coach (quarterly, for example), an A1C twice a year, an annual eye exam, and so on. Being enrolled in such a program will save thousands each year. Here is a link to such a program offered by United Healthcare: https://www.myuhc.com/content/myuhc/Mem ... _guide.pdf

When your son is on his own and comparing insurance plans during open enrollment, he should be sure to look into whether any of his insurance options offer such a program and weigh that into consideration of the total annual costs of his health care with the different coverage options available to him.

Also, when he is employed, he should check what life insurance coverage can be purchased without a medical exam. Some employers will let you purchase a multiplier of your salary (3x salary, 5x salary, etc) with no medical exam.

Management of Type 1 diabetes has advanced leaps and bounds over the past thirty years. [Medical advice removed by moderator oldcomputerguy] By letting the technology work for him in maintaining his BG levels, the cost of his diabetes, both financially and otherwise, will be very, very manageable.

Good luck!
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Re: Son diagnosed with Type 1 Diabetes - how prepare for future?

Post by oldcomputerguy »

A couple of comments containing medical advice were removed. As a reminder, medical advice is off-topic for the forum. See Medical Issues:
Questions on medical issues are beyond the scope of the forum. If you are looking for medical information online, I suggest you start with the Medical Library Association's User's Guide to Finding and Evaluating Health Information on the Web which, in addition to providing guidance on evaluating health information, includes a list of their top recommended sites.
Please keep replies centered on the financial aspects of the OP's situation.
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Horton
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Re: Son diagnosed with Type 1 Diabetes - how prepare for future?

Post by Horton »

My father was diagnosed with type I back in the 1950’s, when he was 7 or 8 years old. The doctor told him that he would be lucky to see 30. :shock: He will turn 70 soon. My how things change!

I wish your son the best. I’m sure you are overwhelmed, but at least it’s a treatable disease these days. The key is that he needs to take care of himself and ask others for help.
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Re: Son diagnosed with Type 1 Diabetes - how prepare for future?

Post by slick_dealer_05 »

Have you considered immigrating to another country? Perhaps, have him go to college in Canada?

Unfortunately, the best way to deal with diabetes is to leave USA. Luckily, your son is young and will find tons of opportunities in other countries.
Last edited by slick_dealer_05 on Sat Nov 28, 2020 4:33 pm, edited 1 time in total.
clip651
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Re: Son diagnosed with Type 1 Diabetes - how prepare for future?

Post by clip651 »

Insulin pricing varies with insurance coverage, and also with various legislation. For instance, Illinois and Colorado have monthly price caps on copays:

https://www.healio.com/news/endocrinolo ... ses-at-100
https://www.diabetes.org/newsroom/press ... is-insulin

Legislation and health insurance will vary over time, so one thing your son should do is keep tabs on that through his life. The American Diabetes Association may be one source to help him to stay up to date on relevant legislation, and there may be others resources as well. As someone suggested above, if he gets into a bind with costs of care, it is possible that relocating to a different state might provide some relief.

Your son should get comfortable with all the details on how health insurance works to continue to make educated decisions on his insurance coverage through his life. An understanding of deductibles, copays, coinsurance, networks, EOBs (explanation of benefits), etc, and how all of that interacts will help him navigate this going forward. As just one example, comparing policies with different deductibles is very different for a healthy person (who assumes most years they might not max out a high deductible) and for someone with a chronic condition (who may need to assume they'll need to pay the full deductible each year). Even while he is on your insurance for the next few years, help him understand what is going on with all of that. If possible, if/when there are claims issues, involve him in getting them resolved. Not a fun skill to develop, but it can be very necessary for someone with a chronic medical condition. You won't be able to predict what health insurance will be available to him years from now. But you can help prepare him to navigate his choices when the time comes.

Financially I think others have made good suggestions. Your son should seek stable employment that will provide continued access to quality health insurance. You and he should both set aside emergency funds for medical or prescription costs that may change in the future, and to help him through any rough periods in life (e.g. job loss) if needed. Aside from that and life/disability insurance issues, I'm not aware of anything different that should be done in this situation (though I am no expert).

Best wishes to your son for good health and good continued access to the care he needs. I think if he learns to stay on top of things medically and financially, he will do very well.

cj
Sagefemme
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Re: Son diagnosed with Type 1 Diabetes - how prepare for future?

Post by Sagefemme »

I have a good friend whose 18 year old daughter, whom I have known since she was born, was diagnosed with T1 at age 6. My friend says having double insurance coverage for her daughter (my friend and her ex both work for a public university) has been extremely helpful. They have been astonished at the rise in the cost of insulin in the time since their daughter was diagnosed.

The irony about the cost of insulin (in the US) is that its discoverers Frederick Banting and Charles Best (and maybe James Collip?) sold the patent to the University of Toronto in the 1920s for one dollar.

From a post about Banting on the website of the Canadian Medical Hall of Fame:

Demonstrating his altruistic commitment to advance medicine, Banting sold the patent rights for insulin to The University of Toronto for $1, claiming that the discovery belonged to the world, not to him. This allowed insulin to be mass-produced, making it widely available to the public for the treatment of Diabetes.


I guess the US pharmaceutical industry didn't get the memo.
palanzo
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Re: Son diagnosed with Type 1 Diabetes - how prepare for future?

Post by palanzo »

Sagefemme wrote: Sat Nov 28, 2020 3:12 pm I have a good friend whose 18 year old daughter, whom I have known since she was born, was diagnosed with T1 at age 6. My friend says having double insurance coverage for her daughter (my friend and her ex both work for a public university) has been extremely helpful. They have been astonished at the rise in the cost of insulin in the time since their daughter was diagnosed.

The irony about the cost of insulin (in the US) is that its discoverers Frederick Banting and Charles Best (and maybe James Collip?) sold the patent to the University of Toronto in the 1920s for one dollar.

From a post about Banting on the website of the Canadian Medical Hall of Fame:

Demonstrating his altruistic commitment to advance medicine, Banting sold the patent rights for insulin to The University of Toronto for $1, claiming that the discovery belonged to the world, not to him. This allowed insulin to be mass-produced, making it widely available to the public for the treatment of Diabetes.


I guess the US pharmaceutical industry didn't get the memo.
It's because the big 3 Pharama control 100% of US production of insulin. Look at what life is like in Germany for a US citizen compared to the US.

https://time.com/5706668/insulin-pricing-us-germany/
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arcticpineapplecorp.
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Re: Son diagnosed with Type 1 Diabetes - how prepare for future?

Post by arcticpineapplecorp. »

Sagefemme wrote: Sat Nov 28, 2020 3:12 pm I have a good friend whose 18 year old daughter, whom I have known since she was born, was diagnosed with T1 at age 6. My friend says having double insurance coverage for her daughter (my friend and her ex both work for a public university) has been extremely helpful. They have been astonished at the rise in the cost of insulin in the time since their daughter was diagnosed.

The irony about the cost of insulin (in the US) is that its discoverers Frederick Banting and Charles Best (and maybe James Collip?) sold the patent to the University of Toronto in the 1920s for one dollar.

From a post about Banting on the website of the Canadian Medical Hall of Fame:

Demonstrating his altruistic commitment to advance medicine, Banting sold the patent rights for insulin to The University of Toronto for $1, claiming that the discovery belonged to the world, not to him. This allowed insulin to be mass-produced, making it widely available to the public for the treatment of Diabetes.


I guess the US pharmaceutical industry didn't get the memo.
back then they used pork insulin.

today's insulin is better than yesterday's (in terms of storage, administration and efficacy)

improvements do cost money (R&D).
It's "Stay" the course, not Stray the Course. Buy and Hold works. You should really try it sometime. Get a plan: www.bogleheads.org/wiki/Investment_policy_statement
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arcticpineapplecorp.
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Re: Son diagnosed with Type 1 Diabetes - how prepare for future?

Post by arcticpineapplecorp. »

JV wrote: Fri Nov 27, 2020 9:47 pm Can't thank you all enough for the advice here. As always, the BH folks come through. Aside from medical insurance, would anyone recommend anything else from a financial perspective? As I mentioned above, I was thinking about funding a Roth IRA for him based on his yearly earnings. He and I would work together on it from an educational standpoint, but if I funded a portion of it, I figure he could use the contributions in a pinch later on if truly necessary. I also figure, provided my wife and I are doing well down the road, we could help him fund his medical insurance/Cobra or whatever he needed at the time to have decent medical coverage until he is doing well financially himself, or with a job with solid benefits. There's obviously going to come a point where he needs to stand on his own, and believe me I do get that, but I figure whatever I can begin doing now to give him a leg up would be something to consider.
sure fund Roth, but make sure he has a sufficient emergency savings account so he's not tempted to touch the Roth unless absolutely necessary.
It's "Stay" the course, not Stray the Course. Buy and Hold works. You should really try it sometime. Get a plan: www.bogleheads.org/wiki/Investment_policy_statement
Normchad
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Re: Son diagnosed with Type 1 Diabetes - how prepare for future?

Post by Normchad »

arcticpineapplecorp. wrote: Sat Nov 28, 2020 5:36 pm
Sagefemme wrote: Sat Nov 28, 2020 3:12 pm I have a good friend whose 18 year old daughter, whom I have known since she was born, was diagnosed with T1 at age 6. My friend says having double insurance coverage for her daughter (my friend and her ex both work for a public university) has been extremely helpful. They have been astonished at the rise in the cost of insulin in the time since their daughter was diagnosed.

The irony about the cost of insulin (in the US) is that its discoverers Frederick Banting and Charles Best (and maybe James Collip?) sold the patent to the University of Toronto in the 1920s for one dollar.

From a post about Banting on the website of the Canadian Medical Hall of Fame:

Demonstrating his altruistic commitment to advance medicine, Banting sold the patent rights for insulin to The University of Toronto for $1, claiming that the discovery belonged to the world, not to him. This allowed insulin to be mass-produced, making it widely available to the public for the treatment of Diabetes.


I guess the US pharmaceutical industry didn't get the memo.
back then they used pork insulin.

today's insulin is better than yesterday's (in terms of storage, administration and efficacy)

improvements do cost money (R&D).
Today’s insulin’s are in fact much better. The stuff I use cane on the market in 1996. It costs roughly $4 to make a vial, and for a long time it retailed for about $25. So they were making good money.....

It now retails for about $325.

I will spend $4000 on Insulin and other Diabetic supplies in the first 2 months of 2021.
likegarden
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Re: Son diagnosed with Type 1 Diabetes - how prepare for future?

Post by likegarden »

My mother had diabetes 1 and lived until age 76. She got this diabetes while giving birth at age 22 during WW2 in Europe and attending medical staff did not know that new mothers could get diabetes 1 during giving birth, would need insulin then, and they would be cured of it. My mother educated herself well about this disease and was very strict in diet and following doctor's instructions. Your son should follow all instructions 100% and he will live into old age.

My family never had much money, but I never heard them complaining about high cost of insulin, it seemed that the insurance paid for it.
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arcticpineapplecorp.
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Re: Son diagnosed with Type 1 Diabetes - how prepare for future?

Post by arcticpineapplecorp. »

Normchad wrote: Sat Nov 28, 2020 5:42 pm
arcticpineapplecorp. wrote: Sat Nov 28, 2020 5:36 pm
Sagefemme wrote: Sat Nov 28, 2020 3:12 pm I have a good friend whose 18 year old daughter, whom I have known since she was born, was diagnosed with T1 at age 6. My friend says having double insurance coverage for her daughter (my friend and her ex both work for a public university) has been extremely helpful. They have been astonished at the rise in the cost of insulin in the time since their daughter was diagnosed.

The irony about the cost of insulin (in the US) is that its discoverers Frederick Banting and Charles Best (and maybe James Collip?) sold the patent to the University of Toronto in the 1920s for one dollar.

From a post about Banting on the website of the Canadian Medical Hall of Fame:

Demonstrating his altruistic commitment to advance medicine, Banting sold the patent rights for insulin to The University of Toronto for $1, claiming that the discovery belonged to the world, not to him. This allowed insulin to be mass-produced, making it widely available to the public for the treatment of Diabetes.


I guess the US pharmaceutical industry didn't get the memo.
back then they used pork insulin.

today's insulin is better than yesterday's (in terms of storage, administration and efficacy)

improvements do cost money (R&D).
Today’s insulin’s are in fact much better. The stuff I use cane on the market in 1996. It costs roughly $4 to make a vial, and for a long time it retailed for about $25. So they were making good money.....

It now retails for about $325.

I will spend $4000 on Insulin and other Diabetic supplies in the first 2 months of 2021.
sorry to hear that.

1. do you reach an annual limit early in the year?
2. maybe hard to quantify, but are you saying today's insulins are not 13X better than that from 1996? (because the price is 13X as great) so while better, they're not that much better that the price is justified?
3. Some of the increase is due to inflation. Though the same insulin costing $25 in 1996 would cost $41.49 today: https://www.usinflationcalculator.com/

so that is an additional $283.51 above inflation. So the medicine would need to be about 7 times better than the medicine from 1996 in order to justify the additional price above inflation.
It's "Stay" the course, not Stray the Course. Buy and Hold works. You should really try it sometime. Get a plan: www.bogleheads.org/wiki/Investment_policy_statement
palanzo
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Re: Son diagnosed with Type 1 Diabetes - how prepare for future?

Post by palanzo »

arcticpineapplecorp. wrote: Sat Nov 28, 2020 6:00 pm
Normchad wrote: Sat Nov 28, 2020 5:42 pm
arcticpineapplecorp. wrote: Sat Nov 28, 2020 5:36 pm
Sagefemme wrote: Sat Nov 28, 2020 3:12 pm I have a good friend whose 18 year old daughter, whom I have known since she was born, was diagnosed with T1 at age 6. My friend says having double insurance coverage for her daughter (my friend and her ex both work for a public university) has been extremely helpful. They have been astonished at the rise in the cost of insulin in the time since their daughter was diagnosed.

The irony about the cost of insulin (in the US) is that its discoverers Frederick Banting and Charles Best (and maybe James Collip?) sold the patent to the University of Toronto in the 1920s for one dollar.

From a post about Banting on the website of the Canadian Medical Hall of Fame:

Demonstrating his altruistic commitment to advance medicine, Banting sold the patent rights for insulin to The University of Toronto for $1, claiming that the discovery belonged to the world, not to him. This allowed insulin to be mass-produced, making it widely available to the public for the treatment of Diabetes.


I guess the US pharmaceutical industry didn't get the memo.
back then they used pork insulin.

today's insulin is better than yesterday's (in terms of storage, administration and efficacy)

improvements do cost money (R&D).
Today’s insulin’s are in fact much better. The stuff I use cane on the market in 1996. It costs roughly $4 to make a vial, and for a long time it retailed for about $25. So they were making good money.....

It now retails for about $325.

I will spend $4000 on Insulin and other Diabetic supplies in the first 2 months of 2021.
sorry to hear that.

1. do you reach an annual limit early in the year?
2. maybe hard to quantify, but are you saying today's insulins are not 13X better than that from 1996? (because the price is 13X as great) so while better, they're not that much better that the price is justified?
3. Some of the increase is due to inflation. Though the same insulin costing $25 in 1996 would cost $41.49 today: https://www.usinflationcalculator.com/

so that is an additional $283.51 above inflation. So the medicine would need to be about 7 times better than the medicine from 1996 in order to justify the additional price above inflation.
The argument that insulin might be 7 times better because the price went up 7x makes no sense. How are you measuring better? The simple truth is that in the US it is an oligopoly. See the link I posted above about a US citizen in Germany and how things are done there. Read it and then you will appreciate what is really going on.
Normchad
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Re: Son diagnosed with Type 1 Diabetes - how prepare for future?

Post by Normchad »

arcticpineapplecorp. wrote: Sat Nov 28, 2020 6:00 pm
Normchad wrote: Sat Nov 28, 2020 5:42 pm
arcticpineapplecorp. wrote: Sat Nov 28, 2020 5:36 pm
Sagefemme wrote: Sat Nov 28, 2020 3:12 pm I have a good friend whose 18 year old daughter, whom I have known since she was born, was diagnosed with T1 at age 6. My friend says having double insurance coverage for her daughter (my friend and her ex both work for a public university) has been extremely helpful. They have been astonished at the rise in the cost of insulin in the time since their daughter was diagnosed.

The irony about the cost of insulin (in the US) is that its discoverers Frederick Banting and Charles Best (and maybe James Collip?) sold the patent to the University of Toronto in the 1920s for one dollar.

From a post about Banting on the website of the Canadian Medical Hall of Fame:

Demonstrating his altruistic commitment to advance medicine, Banting sold the patent rights for insulin to The University of Toronto for $1, claiming that the discovery belonged to the world, not to him. This allowed insulin to be mass-produced, making it widely available to the public for the treatment of Diabetes.


I guess the US pharmaceutical industry didn't get the memo.
back then they used pork insulin.

today's insulin is better than yesterday's (in terms of storage, administration and efficacy)

improvements do cost money (R&D).
Today’s insulin’s are in fact much better. The stuff I use cane on the market in 1996. It costs roughly $4 to make a vial, and for a long time it retailed for about $25. So they were making good money.....

It now retails for about $325.

I will spend $4000 on Insulin and other Diabetic supplies in the first 2 months of 2021.
sorry to hear that.

1. do you reach an annual limit early in the year?
2. maybe hard to quantify, but are you saying today's insulins are not 13X better than that from 1996? (because the price is 13X as great) so while better, they're not that much better that the price is justified?
3. Some of the increase is due to inflation. Though the same insulin costing $25 in 1996 would cost $41.49 today: https://www.usinflationcalculator.com/

so that is an additional $283.51 above inflation. So the medicine would need to be about 7 times better than the medicine from 1996 in order to justify the additional price above inflation.
1. I do have a early max. So far in 2020, I’ve spent $6K out of pocket, and roughly another $6K in premiums
2. I’m using same insulin as I was in 1996. The efficacy is the same.
3. Inflation is a thing. At some point though, the 3 companies that make this stuff all decided to just jack the price up in the US....

Being Diabetic in the US is just very expensive. No company in their right mind would pursue a cure, because it’s just too profitable the way it is......
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Re: Son diagnosed with Type 1 Diabetes - how prepare for future?

Post by LadyGeek »

The discussion is getting derailed on global insulin pricing. Please stay on-topic, which is helping the OP.
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JV
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Re: Son diagnosed with Type 1 Diabetes - how prepare for future?

Post by JV »

Between the BHs who have reached out via PM and those who have responded to this thread, it has been an immense help. Thank you all for your kind responses and best wishes.

I think I have a solid grasp of how to financially tackle this, between things I can do now and how I can coach him in the future. DW and I are lucky that we make solid incomes and have lots of savings. He's only 17 and finishing his senior year, and he has no clue what he wants to do with his life. He'll probably go to a community college for two years, and beyond that who knows. I'm torn with wanting him to enjoy the last vestiges of his last year before he needs to start "adulting," but we all know he will need to grow up a bit more quickly because of this health challenge.

He has the personality of a California surfer (to stereotype a tad), so on the one hand he rolled with this gut punch incredibly well, but on the flip side, getting his buy-in to how seriously he needs to take this and how he will need to take true ownership of this eventually will be our biggest challenge. I know he will get there, but the toll it's taking on DW and I is...difficult...to say the least. I'm finally starting to get 6-8 hours of chopped up sleep, but in the first 2-3 weeks, maybe 2-4 hours a night.

Life hits us all with challenges, some harder then others. I am thankful for you all and for the wonderful advice you so freely give. Thank you.
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Re: Son diagnosed with Type 1 Diabetes - how prepare for future?

Post by Dfree »

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Last edited by Dfree on Sun Nov 29, 2020 11:42 am, edited 1 time in total.
sawhorse
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Re: Son diagnosed with Type 1 Diabetes - how prepare for future?

Post by sawhorse »

I strongly recommend looking into getting insulin from Canada or another country. It's several times less expensive for the same product.

There are several online support groups and forums for both patients and parents. Have you looked at and/or joined them for tips and advice?
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JV
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Re: Son diagnosed with Type 1 Diabetes - how prepare for future?

Post by JV »

sawhorse wrote: Sat Nov 28, 2020 8:03 pm I strongly recommend looking into getting insulin from Canada or another country. It's several times less expensive for the same product.

There are several online support groups and forums for both patients and parents. Have you looked at and/or joined them for tips and advice?
My wife is on a bunch of Facebook diabetic support groups, and they've really helped us. I am extremely lucky to only have a $15 copay for insulin, as my wife's benefits are stellar. We do not take this for granted, especially now. We were planning to retire in our early 50's, but I think my wife will probably work until 57 to collect her full pension and keep her benefits going. I was going to jet from my job at 55 to be able to tap my 401k, but that may be put on hold as well.
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Re: Son diagnosed with Type 1 Diabetes - how prepare for future?

Post by Sagefemme »

arcticpineapplecorp. wrote: Sat Nov 28, 2020 5:36 pm
Sagefemme wrote: Sat Nov 28, 2020 3:12 pm I have a good friend whose 18 year old daughter, whom I have known since she was born, was diagnosed with T1 at age 6. My friend says having double insurance coverage for her daughter (my friend and her ex both work for a public university) has been extremely helpful. They have been astonished at the rise in the cost of insulin in the time since their daughter was diagnosed.

The irony about the cost of insulin (in the US) is that its discoverers Frederick Banting and Charles Best (and maybe James Collip?) sold the patent to the University of Toronto in the 1920s for one dollar.

From a post about Banting on the website of the Canadian Medical Hall of Fame:

Demonstrating his altruistic commitment to advance medicine, Banting sold the patent rights for insulin to The University of Toronto for $1, claiming that the discovery belonged to the world, not to him. This allowed insulin to be mass-produced, making it widely available to the public for the treatment of Diabetes.


I guess the US pharmaceutical industry didn't get the memo.
back then they used pork insulin.

today's insulin is better than yesterday's (in terms of storage, administration and efficacy)

improvements do cost money (R&D).
I think the very first insulin used from Banting and Best was from dog pancreases. And yes, what we have now in the world of insulin is miles better. But the fact remains that Americans subsidize the rest of the world when we (or our insurance companies) pay such large, and ever-increasing, prices for prescription drugs. IMHO.
Sagefemme
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Re: Son diagnosed with Type 1 Diabetes - how prepare for future?

Post by Sagefemme »

JV wrote: Sat Nov 28, 2020 8:20 pm
sawhorse wrote: Sat Nov 28, 2020 8:03 pm I strongly recommend looking into getting insulin from Canada or another country. It's several times less expensive for the same product.

There are several online support groups and forums for both patients and parents. Have you looked at and/or joined them for tips and advice?
My wife is on a bunch of Facebook diabetic support groups, and they've really helped us. I am extremely lucky to only have a $15 copay for insulin, as my wife's benefits are stellar. We do not take this for granted, especially now. We were planning to retire in our early 50's, but I think my wife will probably work until 57 to collect her full pension and keep her benefits going. I was going to jet from my job at 55 to be able to tap my 401k, but that may be put on hold as well.
I'm so glad you have good insurance. It will allow you and your family to focus on learning how to manage T1, instead of how to pay for it, and should make all the difference getting through the stressful steep learning curve.
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Re: Son diagnosed with Type 1 Diabetes - how prepare for future?

Post by LilyFleur »

arcticpineapplecorp. wrote: Sat Nov 28, 2020 5:36 pm
Sagefemme wrote: Sat Nov 28, 2020 3:12 pm I have a good friend whose 18 year old daughter, whom I have known since she was born, was diagnosed with T1 at age 6. My friend says having double insurance coverage for her daughter (my friend and her ex both work for a public university) has been extremely helpful. They have been astonished at the rise in the cost of insulin in the time since their daughter was diagnosed.

The irony about the cost of insulin (in the US) is that its discoverers Frederick Banting and Charles Best (and maybe James Collip?) sold the patent to the University of Toronto in the 1920s for one dollar.

From a post about Banting on the website of the Canadian Medical Hall of Fame:

Demonstrating his altruistic commitment to advance medicine, Banting sold the patent rights for insulin to The University of Toronto for $1, claiming that the discovery belonged to the world, not to him. This allowed insulin to be mass-produced, making it widely available to the public for the treatment of Diabetes.


I guess the US pharmaceutical industry didn't get the memo.
back then they used pork insulin.

today's insulin is better than yesterday's (in terms of storage, administration and efficacy)

improvements do cost money (R&D).
Yes, I am on a new and improved insulin, Tresiba, which makes my life easier by smoothing out some of the ups and downs of my basal insulin. Tresiba was approved by the FDA in 2015.

In the U.S., a box of five injection pens of Tresiba costs more than $500. In a London pharmacy, I asked the pharmacist for the price of a box of Tresiba. First she said, "Oh, there is no cost to you. Just hand me your NHS card." After I explained that I was from the U.S. and would be paying cash, she found the price: $100 for the very same box of insulin that costs $500 in the U.S. So in the U.S., T1 diabetics pay a much higher price for improvements in insulin than do those in other countries. And T1 diabetics must take two types of insulin--a basal insulin like Tresiba and a short-acting insulin for meals. And, short-acting insulin is used to treat high blood sugar episodes caused by stress, illness, and sometimes you simply don't know why.

The U.S. is the only wealthy nation with diabetics dying from rationing insulin, that I know of.

Currently it is illegal to deny coverage for preexisting conditions in the U.S. Anytime there are lawsuits and legislation challenging Obamacare, T1 diabetics get very worried, because the guarantee of coverage of pre-existing conditions is part of the Obamacare legislation.

Half my pension goes to my platinum level PPO health insurance that I buy directly from Blue Shield. I am extremely thankful for the doctor who injects my eyes with a special drug every couple of months to keep me from going blind. Some of it is covered by my insurance and some of it is $300 out of pocket. One month when I required multiple injections, I paid $1200 out of pocket in addition to my monthly health insurance premium of $1775.

Yes, insurance for your son will be one of his life priorities.

He will not be defined by his illness (few of us are), but being a T1 puts a very constant level of stress on a person that people who do not have it don't understand. For example, I always have bottles of Coke with sugar in my refrigerator because if I start vomiting, I can pass out from low blood sugar if I can't keep the food down that is needed to balance the short-acting insulin I previously took for that food. Usually I can sip enough Coke to keep myself out of danger. I also always carry glucose tablets with me in my purse. I also am constantly looking at my phone to see what my blood sugar is (this might look like rude behavior). Every day is a constant balancing act of calories, insulin, and exercise. Stress can elevate blood sugars to unhealthy levels. A meal with more fat can cause the meal to be digested more slowly, and then an additional shot of short-acting insulin may be required hours later... sometimes in the middle of the night. My CGM will wake me with a loud alarm for both high and low blood sugars. This is helpful, as those of us who have had T1 for decades may not sense low blood sugars (sweating, racing heart) the way we did at the beginning of the disease. The CGM is both a blessing and a curse.

You may want to consider giving your son more inheritance than the other children, as his life will be more expensive than most. I like you are considering how you can help him.

When I was diagnosed at age 17, blood sugar monitoring was not even available. I know that things will be much better for your son, and that with a lifetime of better-managed blood sugars, he will be much better off than my generation, if he has good insurance.

I wish you and your son the best!
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Re: Son diagnosed with Type 1 Diabetes - how prepare for future?

Post by LadyGeek »

The discussion is straying into medical advice (effects of disease and treatment). Please stay focused on the financial aspects.
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