Where does the money go when you contribute to research? Do we pay for the research and then pharmaceutical companies make billions in profits selling it back to us so we pay two or more times.
If you don’t care about your privacy, maybe you care about your money. You pay for health care, your information is then sold/traded/bartered, the politicians then give researchers taxpayer money to do research, and people donate money for research. The research is done and then the people pay again for the resulting pharmaceuticals or patent testing. How many times have you paid for the pharmaceuticals and tests you may, or may not, use?
I have read the websites, and reviewed the financial statements of several health foundations/societies/agencies. They put on the website some information which is useful to people with that particular illness. But I also noticed that 23%-53% of the money raised went to fundraising costs, even with volunteers. There are no details as to how the money is actually spent. Does it all go primarily to one fundraiser, are there connections to the foundation/society/agency personnel, or are the costs spread among a lot of different people/companies, and are the costs justified? Who are the fundraising people/companies and are they affiliated with the politicians. The fundraising costs amount, in some cases, in just one society/foundation to hundreds of thousands of dollars, annually.
The websites say that they give x dollars to researchers and sometimes they name the researchers or research being done. But they don’t account for the money or the research. Is the money just to pay wages and, if so, what are the wages of the researchers? Do the researchers have funding from somewhere else? Could they be double- or triple-dipping? How else is the money being spent and is it being spent wisely? We don’t know because there is no information.
The websites also don’t tell you what happens with the research. Was the money spent on research that was successful? How much did it cost to find a cure or something that aids a sick person? Again, was this money spent wisely? What happened to the successful research – was it then patented? If so, who gets the money and how much does the patient/taxpayers have to pay, again, for the results of this research? Even if the research was unsuccessful, was the money spent wisely? Could the money have been better spent aiding sick people in some other way? The BC Cancer Agency website says that they have “set up the Technology Development Office to champion its intellectual property management (presumably that means “market” its, not the people’s, intellectual property) and commercialization. They also say that they “partner closely with research institutions, non-profit organizations, and industry around the world to help drive new discoveries forward quickly” and they have a “duty to act on behalf of our patients and the general public to ensure that a culture of accountability is fostered”. Are yet they won’t say specifically who they are sharing our information with and under what circumstances so where does the accountability come or is it just lies? The Liver Foundation provides minimal financial information but does say you can contact them to get the details. I contacted them, several times, and never got a response.
I am upfront about the fact that I don’t contribute to these organizations (at least not willingly). When they provide me with enough information that I know my money is being wisely used for the benefit of sick people, and not to line someone’s pocket, I will contribute. Needless to say, I would also want assurance that the research wasn’t using stolen information and being given to pharmaceutical/research organizations with a unethical/criminal history (4, 5, 6).
I heard, some time ago, that there is medical research that would benefit patients but that it is not being done because it can’t be patented. I doubt that things have changed. Gawd forbid that we would pay for research and then have a medical benefit that would cost the patients/taxpayers nothing or next to nothing more.
If you read post “Patenting DNA”, you will see that the public “invests” their information (mostly without their consent or knowledge), monetarily fund the research and then research hospitals/universities patent/sell what they discover. They are the owners, not the citizens. The hospitals/universities then charge the citizens for the test/drug, etc. and keep the money to use as they see fit. The citizens do not have a say, they are not even allowed to know how much money is being made off the citizens investment as it has now become “confidential”.(1) The information, and the money, has gone from being ours, to being theirs. (2) Interesting how that happens.
Is this not exploitation of the sick? No wonder “Many (billionaires) have gotten rich from interests in …..the pharmaceutical and health-care industry”. (3) Is research just a wealth transfer project where wealth of information and money is transferred from the many to the few? Oh, please let me donate more. The wealthy suffer so much.-). Are the foundations/charities primarily fronts for the pharmaceutical companies? We don’t know.
If we are providing the body parts and information and paying for the research, are we getting the research WE want or just the research that will line the pockets of the multinationals?
When I was in front of St. Paul’s I had a discussion with someone on this topic. This person said the pharmaceutical/research companies need the money for marketing. Why? If this is a necessary medical product why do you need to spend a lot of money advertising or running around convincing people to buy as much as possible? If this is just some cosmetic product or duplicate with a new flavour, then why is our money being invested on this kind of research?
Isn’t it time we knew where our information, our body parts and our money was going? But that would require transparency and accountability, something the medical business, in all forms, has an aversion to. I wonder why?
And, Isn’t it time we claimed ownership of our investment?
- Breast cancer gene patents: the Canadian story – Kelly Crowe, 18 Jul 2013, CBC News
- SickKids Hospital dragged into U.S. Breast cancer gene suit – Kelly Crowe, 18 Jul 2013, CBC News
- Wealth gap: Canada’s middle class is not immune to trends of income concentration – 20 Jan. 2015, The Globe and Mail
- Pharmaceutical Corruption Media Articles, www.wanttoknow.info/pharmaceuticalcorruptionmediaarticles
- Ethics in pharmaceutical sales, wikipedia
- 7 Shameful Examples of Big Pharma Fraud, Vactruth.com