I’m not a social Darwinist, and I believe in taking care of human life that has been born, regardless of disability or disease. I also don’t believe in overpopulating the earth, but that has to come from reducing the birthrate, not with allowing people with valuable lives to die.
And yeah, I’d like a cure, but I’m doing my best to live PAST 80 by taking care of myself, and DO want the technology to make it easier.
Opinions vary on how much exactly it’s worth to take care of one of us though? 2x test strips/ day, 10x test strips/ day, # of syringes, # of Infusion sets, etc. are all barriers I run into all the time…
So how much do you think it costs to take care of a severely brain-damaged teenager in a wheelchair who needs a full-time assistant, and expensive power wheelchair and standing board and lifter, and special van all provided by the school district and the govt? We are small potatoes compared to some of the services other people need and ARE GETTING! We just don’t look pathetic the way some people do. Not that I want to trade places with them, but I’m getting real tired of Natalie Strand syndrome – if she hadn’t done careful planning, AND had a companion who saved her life multiple times, she wouldn’t have won that race, she would have died! The real hero of the race was her companion!! Instead of fooling the world into believing that we can cheerfully do anything, how about letting them behind the scenes to see what it REALLY takes?
Sheesh! This is becoming dark indeed! In some cultures the elderly (30s?40s?) were left behind in the forest because they no longer had their teeth. Do we really want to go back there?
Come on, we all deserve a life which is complication-free, productive, and free from fear. If modern technology and…dare I say … a cure?.. will provide that, I’m all for it.
I’m hoping that Jerimiah was having a momentary existential crisis or something? Joanne
Well, still > 1/2 of the LE amputations in the US are due to diabtes I think those aren’t exactly cheap either, and can be almost as disabling as a head injury. Plus, I think if someone were severely brain damaged, they wouldn’t get them an expensive power wheelchair? I have some cousins in that boat so I’m not totally unfamiliar with the scenario?
It bothers me a lot to have heard stories here of people w/ T1 or T2 whose supplies are limited by doctors who are not interested in finding out how to help them manage it successfully. Instead, they use the relatively low standards of “the industry” to say “well, try for 7.0, that’s pretty good and, to help achieve that, I’ll rx you 7 strips/ day, just like your insurance company wants!” without exploring “well, if you want to be active” or “if you want to do a hobby that requires concentration or perhaps not concentrating or whatever” you’d better make sure your BG is ok. You should also make sure you are ok to drive to and from work, take your kids to soccer, change a flat tire without impairing your “test supply” for a month. Hmmm, maybe many people need to do more testing and have meaningful interaction?
A lot of people here @ Tu seem really active and engaged and many of the newly dx’ed people seem to do ok at getting supplies and stuff but it makes me apopleptic for about 2 weeks every year when Blue Cross demands that I get diagnosed again and reboots all the prescriptions. It basically wastes my time and their money so to me, it seems like things like that, where a large insurance company could save several hundred bucks per person with diabetes (200 million bucks, at least if there are a million of us in the US…enough to buy an F22 and several missles…). All it would take to fix that would be a different perspective but it’s not there.
I think that in some ways the focus on the cure obscures the fact that the dialogical paradigm employed by the medical industry could be streamlined for people, particularly those of us who might think or perhap could prove that we are “in control” of things? I don’t see a huge need to need prescriptions except to get stuff covered by insurance who, astoundingly, seem hell-bent on making me waste their money?
Weighting anything medically related, such as putting $ and energy into cure vs better control, is always sticky. I was at a talk the other night given by my oncologist. The question of changing the recommendations for mammograms came up (it’s now recommended after age 50 rather than age 40). It was changed because a science-based government group discovered that mammograms for the 40-50 year old group will save1 life out of a thousand. The recommendations for PSA testing for prostate cancer are about to change for similar reasons.
I’m not saying that one life isn’t worth saving; that’s a judgment we all have to make on our own. However, if one looks at the other 999 women, there will be countless mis-readings, misdiagnoses, further testing to find that ‘it’ is benign, not to mention the anxiety caused to the women being tested. The change was made based on science, not morals.
So…who is to make the judgment that it’s more worthwhile to concentrate on research for a cure, or to continue to do research into innovative and better tools for management? I sure wouldn’t want to be the one! Compromise seems to be the solution, but again I wouldn’t want to be the one to decide what % of funding to allocate where.
A bit off topic, but addressing natalie’s comment, I have 2 adopted special needs sons who receive many $$ in services yearly. One lives in a group home, one has chosen to live on the street or in jail. The costs are incredible, and provide very little solution - barely a bandaid.
Gonna start a new line, because I can’t reply to AR directly. But. A couple of things, in random order:
Yes, they DID pay for a power wheelchair for this brain-damaged girl, who was in my Japanese class, and learned one thing all year – to bow her head when I said konnichi wa (hello). She was in my class because her grandmother, who was taking care of her after her mother almost drowned her at age 2 by answering the telephone while the baby was in the bath, insisted that she get a “real” education rather than being in a school for the severely handicapped, where they could have cared for her far more cheaply, and actually given her some pleasant experiences, like being held in a warm swimming pool.
Next item: the medico-pharma-insurance axis is NOT there to make people healthier or give them better, more enjoyable or more productive lives. It’s there to make money. But it’s complicated by the need to pander to politicians who want “proof” that their interventions work. So you get studies like the one in England that said that there was no indication of improved outcomes between Type 2’s who tested, and those who didn’t. So you got the NHS questioning whether they should provide test strips to Type 2’s. I don’t know what the outcome of that was, but it’s disturbing to say the least, because the study was flawed. Politicians aren’t expected to know that.
My own insurance system has instituted a program where you have to sign into a website where you get your putative “health” measured. Because I have several health conditions, I’m on the “at-risk” list, and they’ve assigned a nurse to call me every 6 weeks. What is not mentioned is that my health conditions are under fantastic control, and I don’t need the school district to waste money on either this website or the nurse calls. I’d really rather just have them pay for my damn CGM when I go on Medicare.
I guess what I’m ranting about is the amount of money wasted frivolously by medically ignorant people “for my own good”, when I’m perfectly able to determine my own needs. I do know that this is not true of everyone, but they babble on about “empowered” patients, and then refuse to let us be so. I wish they would let us zebras BE zebras, and not subsume us under generalizations. I’m a person, not a statistic.
OK, rant over.
I would just say that if she could drive a wheelchair, perhap she’s not “severely” brain damaged, compared with someone who has to be pushed around although I’m not at all famiiar with “degrees” in that horrible situaion. My cousins were mainstreamed and have made amazing progress over the years. But I don’t think they could operate a chair, except maybe in a wide open area?
I generally think that any attempt by heath insurance to “help” you with nurses or contact is likely a sort of spying. I did the free health coach thing @ work by my insurance is through MrsAcidRock although it would not suprise me if those $%#%@&^ got ahold of it somehow?
Not all insurance is there to make money though, a lot of entities are non-for profit and don’t answer to shareholders or anything like that. The profit motive isn’t totally there but the urge to “manage” seems very difficult to repress anyway. My doc RX’ed 17 strips/ day and I was like “jackpot” but, somehow, the health insurance “pharmacy company” (I’m not sure if they are for or not for profit…) “converted” that to 14? Not a huge deal, so far I was only close a couple of times, when my pump blew up (a “programmable” event as I’m sure that MiniMed would have alerted them that they were shipping me a new pump?) and then when the marathon was getting close. Walgreens is odd about insulin, they won’t give me two bottles but will give me one every three weeks or so when I run out. This should bother me and I’m sure that it’s a recipe for disaster somewhere down the road but, for now, it works. If they had proof I was selling %$#& on the “black market”, let them go ahead and make a caee but, guess what? I don’t keep track of the stuff at all, just when I need to go get more. It totally enrages me to call them and they go “we can’t refill that yet”. I know where their office is and I can regularly hit a driver 250+ yards. I can’t quite hit it straight but it’s a big office and is right across the street from a big park!!
no crisis i think it astitude to try and look at things from all feasible angles and try and debate those angles out. i don’t see a problem in talking about death and life and quality vs length etc etc… i think it has opened up an interesting discussion if you don’t like it please don’t particpate but please don’t mistake this as going out of me feeble mind…
Oh, no, she couldn’t drive it. The power was so that her grandmother or her aide could adjust the seating to vary her position so that she wouldn’t get pressure sores. She couldn’t move on her own at all, nor could she speak or eat without choking (and they fed her by mouth anyway) or do anything other than look. That’s why I wish she were in the other school, because a warm swimming pool might have been a pleasant feeling for her, or someone bringing flowers for her to smell, or even to be tube fed while receiving tiny tastes of good food that she didn’t have to swallow. The poor thing broke my heart, because with 35 other kids in class, I couldn’t do anything real for her. I let one of the boys who was having social and emotional problems become her guardian, because he was really lively and funny, and could make her laugh.
I’m sorry about your insurance problems. My insurance fills my insulin as needed, but I’ve had the “too early to refill” problem with other meds, and one of them caused serious problems when I was out for 5 days. I don’t like to keep track, either, but I hear that for Medicare, you HAVE to. 
Well, it’s not a problem yet but every book/ manual/ website says “have an extra bottle just in case!” and I don’t seem to have one these days. It runs out every 3 weeks. The rx is 35-50U/ day/ month which would add (or multiply?) out to 1050 units or 50U > a bottle, not a lot but if I run out and they say “no”, I’m up $#%& creek!
A new study just completed shows that people will fill up responses to a thread based on their preconceived notions to completely obliterate rational thought. this thread is that study.
READ the STUDY and it’s results.
(I will never donate to the OP’s cause, this thread has proven that at least he is incapable of reading a study and understanding its results)
Sorry Jeremiah, I didn’t really think you were out of your mind.
I’m T2 and I don’t use all the technology. In fact, I do use my meter but have never been able to get a script for strips. (I guess I can blame the Accord for that.) Still, I am glad that the technology is there for those who need it. Here, in Ontario, Canada pumps have been approved for all T1s and age is not a factor. I think that is a good thing. It certainly has improved the quality of life for many.
As I am now seeing the “elderly” stage swiftly approaching, the “thinning of the herd” idea is quite frightening. Joanne
I agree w/ you and Jeremiah that the “thinning of the herd” idea is frightening! I would be lost without my technology!
Nick,
We can discuss this back and forth all day. My opinion is that your getting “furious” and the general direction of the JDCA is somewhat counterproductive (and actually a waste of your benefactor’s money - but it’s his money!).
I can’t possibly imagine a research project being undertaken at any level (beyond a self-funded one) that does not have “specific goals or focus”.
Now re: a “Cure”. Have you read the report put out by DiaTribe entitled, “Targeting a Cure for Type 1 Diabetes - How Long Will We Have To Wait?”? At over 150 pages, I think it is a pretty good primer on what’s going on, but more importantly lays out the dilemma posed by using the word “cure”.
I wish you guys luck and hope that you will approach your mission from the positive perspective and not the negative, angry one that I currently perceive.
Mike,
It’s alright. I hope that you don’t perceive me as being angry, or either our organization as such, because that’s definitely not the perception I want to give off. And yes, we could debate this back and forth all day, and in the end, we may just have to cosign to having opposing viewpoints. It’s no sweat.
I’m going to try and steer the rest of this thread away from the JDCA, because I never intended it to kind of “take over” this discussion.
To TS:
As opposed to laying down everything in the summary, I short-cutted. The final outcome of the study is that those who watch tv more do have worse blood sugars, but they couldn’t figure out why, with the most presumed answer being that children may snack more in front of the television. As you said, a ton of stuff was ruled out, including daily activity and socio-econimic status, and my quick summary did not do it justice, especially when I used “inactive” as a shorthand for “sitting in front of the television for long periods of time”.
As for your comment about not donating to our cause, it’s okay if you do not support what we’re doing, but as I wrote earlier in this discussion, we DO NOT accept donations, and are self-funded. I plan on steering this convo away from that subject anyway, as I never intended the organization I work for to kind of become the dominating thing in this thread.
I found a number of definitions of ‘cure’. Here are a few. I’m sure it has a different meaning for each of us. Which do you choose?
Relieve (a person or animal) of the symptoms of a disease or condition: “he was cured of the disease”.
1.a means of healing or restoring to health; remedy.
2.a method or course of remedial treatment, as for disease.
3.successful remedial treatment; restoration to health.
To heal; to restore to health, soundness, or sanity; to make well; – said of a patient.
:recovery or relief from a disease
: a complete or permanent solution or remedy
I vote for 1. I am waiting for the pig trials!
If anyone wants to buy me some snacks and take notes, they are more than welcome to study whether watching TV makes me eat more of them!