posted in advocacy instead.
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.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?
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.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
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.
Research budgets in most countries are seen as separate from healthcare costs.
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.
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.TomK said:Research budgets in most countries are seen as separate from healthcare costs.
Well done on that.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..
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.Thanks for the feedback TOMK. Just trying to stimulate ideas and take some initiative.