What would YOU pay for a cure?

Purely hypothetical situation here…

Lets say a virtually guaranteed cure for Type 1 was available to you. The catch is that (1) you’d need to spend the next 12 months in a hospital/clinic hundreds of miles from home (away from your family and your job/income) and (2) it would cost you $250,000 (US$, or the equivalent in your country) out-of-pocket – all while not working and not earning an income. Your food, bed, and medical care would be included; all other expenses are extra.

Would you do it?

What would these numbers (12 months, $250,000) have to be to make it worthwile, or not worthwhile, for you?

Could anyone do that except people at the top of the economic stratosphere? I work in social services for a non-profit, and it’s embarrassing to say how many years it would take me to earn $250K. I don’t think there will be a cure in my lifetime, and even if there was, I would be ambivalent about it. This is all I know, and it’s shaped who I am and the direction my life has gone. I would have a really serious identity crisis without it. That being said, if there was a cure, I couldn’t afford it unless it was covered by health insurance and I could continue working.

I would have to agree with Leann on this one! If I were rich I would pay 250,000 to get cured. I am not rich and I can not afford 250,000. I wouldn’t even take a loan out for it. The economy is terrible! I would have to pass and Pray the insurance companies would cover the cost, after all that’s what we pay premiums for…right?

I would spend $25,000 in a heartbeat (might have to work my feminine wiles to convince my husband,) but I’d have to win the lottery to put out $250,000. Sort of puts in into perspective, eh? I wouldn’t give up my home or future security, or ask my family to do so, for a cure, so it’s not that bad!

Ambivalent is the perfect word choice for how I feel about a cure, Lee Ann.

In my personal interactions over the years, I’ve felt that the demand for a cure seems to be stronger with the newly diagnosed or family members of diabetics. But T1s who have lived most of their lives with it…acceptance came a long time ago for many of us. It’s not that we’re resistant to a cure. But I think we’re more skeptical. It has always been just around the corner, as far as the ADA is concerned. My family and my medical team, however, never wanted to give me any false hope. They taught me how to co-exist with the condition. So that’s where I stand in relation to the big C.

And if there ever is a cure, I’d pay for it only within my means to pay for it. I would treat it like any major elective surgery one might consider. And that’s going to depend on each of our personal finances.

I’m going to assume that the $250k is after insurance, or, more likely, not covered by insurance. Why would an insurance company pay for something that costs $250K, even if it would save them the almost 15k that they pay every year for my supplies and medications (assuming there is no extraordinary event in any year).

Would I pay it? I could deal with the financial cost, but the emotional cost and toll of spending a year away would be too much, even if it meant longer life and better quality of life. What year of my daughter’s life would I miss? It would be a very tough decision.

Thanks for all of your varied responses.

I think Jonathan kind if hit what I was aiming towards with this question. Many of us think, at times, that we would do ANYTHING to rid ourselves of this disease. So I picked a high dollar amount, plus a high emotional toll (separation from life as we know it). And for some of us, we can beg, borrow, or steal the money (I don’t advocate theft, by the way), but we can never get back the time and experiences we might miss while going through the treatment.

In my case, I’m sure with the help of family (and second mortgages, and skimping in other areas) I could scrounge up the $250k - and I’m fortunate in that regard. After all, how much will diabetes cost me in the years to come otherwise? But would I be willing to miss out on a year of watching my son grow up (years 1 1/2 through 2 1/2), and have my wife try to tackle the task alone? I’m not so sure I’m willing to do that. At the same time, if it give me a better shot at watching my son marry and have kids of his own, perhaps it (the time away) is a small price to pay.

It’s interesting to see the responses which state that diabetes is the life they know, a part of them that they might miss if it were gone. I really never expected to see that at all.

So the question stands: (forget the $250k/1 year for a moment). How much money, and how much time, would make it worth it for you? Would you take out a loan, a second mortgage, spend time away from the life as you know it, knowing you could return home to a diabetes-free life?

I wouldn’t go to any extraordinary measures. If it was a standard co-pay and a couple of nights in a medical facility, maybe. I can understand wanting a cure because I used to want one, so I hope there is one someday for people who want it. I’m sure there would be some advantages to not having it, but like I said, this is all I know, and knowing myself, I don’t think I would adjust very well to not having it. It would be akin to having my gender changed or finding out my family isn’t my real family or something equally fundamental to who I am. Diabetes has made me who I am, and it’s brought so many wonderful people into my life and presented opportunities to me that I wouldn’t have known otherwise. I have no reason to think I won’t continue to meet people or have opportunities because of it. It’s part of my identity and I don’t think I want that taken from me.

Some very interesting perspevtives on the “cure”. I am a 40year old newly diagnosed (within the past year) T1 diabetic. I don’t like it, I don’t like the fact that i have to accept it, I also don’t like that is changes everything I do. I think i’m still pretty active, and it is a pain. With that in mind, The money would be the easy part…I’m sure I could get a loan, that i would have to pay off the rest of my life…But that is the important part, maybe my life goes on a little longer…spend time with the woman I love and to see my two little girls grow up to be women…Problem here for me is I don’t think I could seperate myself from these to situations…right now, life is a little to precious!!! I would do alot for a cure, but I wouldn’t give away the years to get it.

Stay well, be healthy and keep exercising!!!

Howard

My kids are grown…they are young adults and I hope to be a healthy grandmother one day. Yes, I’d go away for a year to possibly add many years. The economy the way it is has me rethinking how my golden years might be, so the $$$ part is harder for me. That would be one more hit my investments don’t need! Of course, the decision would have to be made by my husband, as well. Time, yes. Money, not so sure.

I hear so many of you talking about not seeing your kids of grandkids grow up as if diabetes is some sort of guaranteed death sentence. Diabetes care today is not what it used to be. If you manage it well, the death sentence is not a likely scenario. I didn’t take care of myself for 18 years, but I’m still plugging along, planning on growing old with my hubby. A positive attitude and a belief this isn’t going to slice years or decades off your life is priceless.

I agree with Melissa. I’ve been a Diabetic for most of my Life…and I do not shy away from that word. Ah…the cost could be done in easy payments BUT I don’t know how I could live without Diabetes. It would take so much to relearn everything. I suppose brainwashing could do it, not hypnotism. Who am I without Diabetes?? I know I could not stay away from my Family that long.

Simply put, I couldn’t afford it. That’s a nice way to tell us we are ‘not worth saving’. I’m on SSI and work PT as it is. Hell with it. Give me my CGMS and pump and I would have to carry on as I am.

I would just have to keep it. I couldn’t afford to do that. I really want to get rid of it and already done more or less that with a pancres transplant that didn’t work for me so I guess the answer is what I just typed!

Thanks for all of your responses. I didn’t mean for this to turn into a discussion on the costs and inequities in health care, and certainly don’t want to divide the TuD community into economic classes. My intent was figure out how much of a hardship people would be willing to take- would we sell our houses, take out loans, etc, leave our families…

Jenny, nobody here is “not worth saving”. The definition of a “valuable person” is not a person who has a lot of money. A valuable person is someone, in my opinion, with good thoughts, good deeds, and good intentions. Please don’t ever think you’re noth worth it.

But, surprising (to me) is that this has become such a part of many people, that some might even say “No, thanks” to a simple wave of a magic wand!

I think Lee Ann made an important point!! I don’t think about diabetes in terms of shortening my life. It may or may not.

In the same way, I don’t wander around all day worried about getting cancer or dying an accidental early death.

Sure, we face greater risks of many complications in life. But when I think of a cure, I can think that it would be more convenient, make future pregnancies easier, etc., but not about the chance to live. I live NOW with diabetes.

If offered a cure, I would take it, BUT it would take some adjustment to redefine myself without diabetes. I think that I would be a carb counter for life-- even if I did not need to. I would not go to the ends of the Earth for the cure, nor pay very large sums of money.

Don’t get me wrong, I WANT to see a cure. There are many people that need it and it would be great if a child never needed to live with diabetes again!

I have read all the responses and I amazed than anyone that could have a cure to this “disease” would not take the opportunity. Yes, i see some of you have made major adjustments to your life styles and yes counting carbs and being much more aware of the effects of food on your body is definately a good thing. But who wouldn’t want the opportunity to live without having to worry about your high and lows? Not having to worry about A1…just going out to play without the need to carry “stuff”. Maybe, i just don’t understand but life without the worry would be great. Just one man opinion to adjusting life with Diabetes!

Scott wasn’t asking whether or not we’d like to be cured - but rather, what we would sacrifice for a cure or what we would pay for a cure. Those are separate questions. I actually blogged recently that I would never be a person who thinks diabetes made me into the person I am today and can’t relate to my friends here who feel that way - I hope I would be the same person either way - but if I have to pay a quarter of a million dollars and spend a year away from my family to have that cure… It becomes a “what is it worth to you?” question. Not a “here, I’m giving you a cure, why won’t you take it you silly diabetic?” question. I don’t want to have diabetes, but I’ve accepted it as the reality of my life and I’m in no way depressed about it everyday. Whether it has made me stronger or not, it’s not a trade-off I’m comfortable with - risks to my health vs. personal growth. But it comes down to whether or not I would pay gratuitous amounts for that cure. It’s just my personal belief that an affordable, accessible cure probably won’t ever be developed, so for me, I’m afraid it’s almost a moot point.

For me, it depends on the day and the situation I am in. I know that sounds weird, but I think there are some days where I would gladly pay that much to cure my diabetes, there are other days where I feel fine to live with it. It’d be nice to actually get rid of the disease as a whole - so no more children have to live with it…and it can’t be passed onto future generations. The question too, is: Is that cure just for me or everyone with diabetes??? If it’s for everyone, I would do it in a heartbeat! I’d try my best to raise money to do it.

Would it not be better to put all our 250ks together and find a cure for diabetes totaly for the next generations to come so they do not have to endure what we have already been through. I have lived a very enjoyable life, only to get to this stage and find out I have diabetes, sorry guys but I’m going for quality and happiness in the rest of my life and would prefer a cure not just for me but for all.