Discussion in 'Action Alerts and Advocacy' started by markmc2000, Oct 22, 2009.
posted in advocacy instead.
ways to fund non-biased research?
After suffering with CFS since 1985 and being thru the medical system time and time again with no solution or even decent relief of symptoms until year 24 with my illness, it becomes apparent to me there is much wasted money and time in the United states health care system. I have witnessed many types of doctors in action you can imagine and although they mean well and want to help, they are often not very effective at providing workable symptom relief, or cures unless you have a broken bone or something physical that can mechanical be fixed. The financial incentive is not there to cure it becuase the 5 minute visits are not enough to understand the patients problems, and there is no support from insurance business or goverment to find cures and good symptom relief programs. The result is a bunch of well meaning primary care doctors, or specialist doctors, doing on their best but often running up huge bills for very littel results.
If all the money wasted on redundant tests, hundreds of doctors visits, and useless drugs that often times are barely better than a placebo, were spent on research for cures and real treatments, it would be a boon for the economy, as well as, dramatically improve peoples lives. Money is wasted on drugs that barely better than placebos, money is wasted on office visits, money is wasted on duplicate MRI's and bloodwork, but the patient isn't ever educated about what he can do to help relieve symptoms cost effectively (thru diet excericse, vitamins, meditiation, stress relief) and just live life the best way possible with something that will proably never go away like CFS, diabetes, MS, etc....I wish somebody would of told me this 25 years ago and my life would be way different. However, my illness has been ignored and I have been left hanging expecting some doctor to tell me the truth or give me some direction. I have finally figured out in my own brain fogged way, I can kind of find vimtains and stuff online that may help me with relief, and the hope of remission some day.
My perception is I go in to see doctor after doctor, most of them who completely ignore what may really going on, they run a bunch of tests, prescribe medication after medication which never help, milk me for as much money as possible, then send me on to the next doctor for the same routine. I have done this literally for 25 years. Why can't somebody tell me straight; I am screwed! Mark, just eat the best you can, take vitamins, get rest, and try to live your life! (in the mean time Mark, we are doing real research to find a cure for diseases like yours, and your disease is not just psychological).
IT help me more than anything, for our country to have a real long term plan and not just sticking ours heads in the sand like America has done with financial reform on down the line. Not the instant gratification way, but the way that has a real "long term" vision. How many people who feel they were once bright and capable are now barely able to pay bills and do stuff like me? No wonder why innovation is suffering in the is country!
I can see many other people with chronic disease going thru the same thing I have gone thru. I would expect the same is true for alheimerz, diabetes, adhd, tourettes, etc....
Part of the problem is capitalism. Sick people and CEOS objectives and diametrically opposed. Drug companies have trained doctors and patients that we should be able to take pill and everything should go away(at the tune of about $150 a month per drug). Drug companies advertise on tv to patients about drugs for illnesses, ins't this the docotrs job to figure out what is best, not he patient asking for a pill? Doctors are given incentives, notepads, clocks, lunches for listeneing to Drug company salesmen, and probably feeling obligated to reciprocate. The result is people go to the doctors office and take another chemical that often just makes people worse and coming back with more side effects, for more drugs. The vicious cycle just goes on.
Then the government and congress, who are lobbied by drug companies figure there is plenty of research going on for a certain illness becuase the drug companies are funding the research. You think the drug companies are interested in finding real cures wherever the cures exist? I doubt it. I think they fund whatever will make them a profit. It is what they are in business to do, don't you think?
SO why are health care costs skyrocketing? there are many chronic illnesses (and maybe even caused by similar mechanims to CFS) that people have. Desperate patients are getting research done with primary care doctors, or specialist office, in a herky-jerky, non-scientific way. Patients and doctors are sick enough of the system that they have taken it apon themselves that they need to find relief and are doing it on a one by one basis in the doctors office. This costs money and is ineffective because the indivaus all have a diffrent situation.
It is not a well designed clinically controlled trial where useful data can be analyzed.
I would like to see what others have to say about ways to reduce health care costs in the United states, while improving treatment, and funding research by non-biased organizations.
So here is the part hard to digest. It is just one proposal, but seems workable in my mind. Albeit probably politcally difficult. One proposal is to put everybody in a single payer health care system. I know, but just try and undertand. Have teams of doctors that quickly diagnose tough and chronic problems like CFS. Work out treatment program that is based on what works, instead of what makes money. So instead of waiting 25 years to get a diagnosis, or never, get one fast for sick people to help them get back in society and make what is left of their lives. This wil savge money. I know I have spent probably over $100k trying to figure out I have CFS. I think it could be done for less. Reduce redundancy and waste. Then use all the real savings (from quick diagnoses, and reduced exprimentation in docotrs office) on funding real cures by universities and real researchers, (other than drug companies). These cures then could come from whereever, and not be biased. Whether it be from vitamins, yoga, sauna, beemers, or herbal plants. We would proabably agree there are many combinations of treatments that may work, but somehow those need to be found and financed. That is the challange.
I would guess that the $2.6 trillion health care cost in US could be cut way down, maybe in half. The $1.3 trillion in savings could be used to cut premiums by 25% and fund research for real cures. You think $800 billion a year, on well designed studies, may help find a few cures???? The rich folks, and other 90% percentile, could by a supplemental insurance if a single payer system wouldn't pay for all the bells and whistles they desire.
JUst some random thoughts on reform. ANy constructive ideas for workable solutions are requested. Maybe we can all get teh ball rolling for lowering health costs and fining cures for disease?
In Ireland and the UK and I think in a lot of other countries too, drug companies are only allowed advertise to doctors, not to patients e.g. in newspapers for doctors, etc.
In the UK, there is a body called National Institute for Health and Clinical Excellence (NICE) which rules on what drugs are and are not value-for-money for an illness. Similarly tests that are/are not suitable. Few people there have private insurance.
However there are flaws with this system as with ME/CFS for example, they have suggested only a few basic tests be run. So people wonder could they have something else.
And the only treatments approved for ME/CFS are GET and CBT based on GET.
And the money for research is actually smaller ((taxpayer) research spending per capita for all illnesses combined is a lot higher in the US than anywhere else in the world). Research budgets in most countries are seen as separate from healthcare costs. I hear people in the UK say "stop funding all the CBT/GET and give the money to research" but really they are two totally different agencies - it doesn't work like that unfortunately.
But health care costs are too dear in the US. Some employers in Ireland will pay for insurance for their staff but the price is much lower. It probably doesn't help the amount of money doctors like to be paid.
So anyway, pretty obvious but to raise more money for research, I wouldn't try to change the existing system - that might be a laudable aim in itself but it won't necessarily mean that the money saved will go to research.
I would just look at the existing system and do what one can to:
- raise money privately (donate/encourage family friends to donate, similarly fundraise/encourage family friends to fundraise)
- lobby if it is useful.
Because of the amount of people with the illness, one doesn't have to give individually that much to raise a lot. Giving $2/week is $100 a year - get 10,000 people to do that and you've $1m. That might fund 5-8+ studies (more in the UK). These studies can then apply for funding - scientists often need basic data to then apply for bigger grants.
Of course, if you get 10,000 people donating, hopefully some will give more than $2/week so you could be talking about a lot more.
When I got involved in Ireland, no money was being raised for research even though there were just under 4 million people in the country. We've concentrated on raising money and have raised a significant amount. I think patients and their families need to take some responsibility for the problem.
I would think the US may use less drugs if the patients didn't request them from doctors after seeing an ad on TV. I guess I am for the approach of not advertising to patients on this issue, becuase I generally believe drugs are often over-prescribed and not a great solution for many people. Where some dietary or lifestyle change is a much more lasting approach.
I can see how folks would be worried about a good diagnosis. It makes sense to have a good dianosis, and would I like to see teams of doctors meet with a patient and communicate for a quick and effective diagnosis. However the way it works here now, is one primary care doctor sees you for like 5 minutes, then bounces you from specialist to speciaist, who never talk to each other, then I leave still without any idea what the heck happened. Only to go to some other specialist who runs the same blood work and MRI's again without looking at the previous bunch of MRI's. Then docotrs notes aren't even legible, so the next docotr can't even read the notes of the previous doctor. It seems like comunication and solid troublshooting is lacking with the very rushed visits.
However, having a primary care doctor trying to diagnose/treat CFS is kind of like going to welder to design the golden gate bridge. The guy may have some useful skills and could kind of get you there, but the outcome is very questionable.
Maybe seeing a team and getting in and resolved quickly then on to some useful treatment seems to make sense at the moment. I know I have spent at least $100k on test and doctors to get my diagnosis over a 25 year time frame, and would never have gotten a diagnosis if I didn't suggest CFS was the cause. Somehow the savings could be funneled to well design research studies. Not sure quite how, but might work with tax. (of course health isurance premiums would be lower due to cost savings) We are spending piles of money over here on this stuff. My health care treatment, vitamins, sauna, presciptions co-pays, and insurance costs me like $1300 a month. It is just unsustainable when unemployed and sick.
great to see research seperate from insurance. That way the solutions are not biased. Not sure how it works here to be honest, but seems like the drug companies are left to do research. Of course hey wouldn't want to find some vitamin cure if it wasn't patentable and profitable.
Good point, I thought I saw figures one time and it seemed we were twice what the next most expensive developed country spends. Not positive, just going from memory.
good point. I donated to the WPI institute, and will see if others will donate too. I have also written our health and human services secretray and members of congress. Hopefully we can get a little momentum.
Thanks for the feedback TOMK. Just trying to stimulate ideas and take some initiative.
I may not have been clear: I was talking about what the government spends. What the government spends on medical/health research is a separate pot of money/budget from what it spends on healthcare in Ireland and the UK and probably some other countries. So if it brings down the healthcare budget in some way, it does not necessarily mean that more money will be available for research. They might spend the money on all sorts of other public spending. Or alternatively reduce taxes.
I agree that drug companies are unlikely to spend much on research on vitamins/supplements which are not patentable.
I know people give out about drug companies a lot but in the ME/CFS area I'd like if they'd spend some money doing some research.
Well done on that.
Yes, it's good to brain-storm. With this illness, you have plenty of time to think so it's then useful to bounce ideas off people.
You can also try a Google Site Search
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