What is Awareness actually ? For whom ? Us ? For a Cause ? Disease ?
Sparks and I were connecting with one another and he brought up a great issue - one that is debatable but warrants some thoughts and provocations. He asked me " Truthfully Beka, I don't understand what 'awareness' is supposed to accomplish. Who's awareness? For who's benefit? I mean, name me one neurological or neuromuscular disease that has been cured or prevented [like through vaccine] ever! I can't think of one, except maybe Polio but, that was a virus wasn't it? ( yes, was the Salks vacccine ! ) ". Share your thoughts on Sparks' questions ?
beka
beka
Replies to This Discussion
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Permalink Reply by beka on -
The practice of “diseasemongering” by the drug industry is promoting non-existent illnesses or exaggerating minor ones for the sake of profits, according to a set of essays published by the open-access journal Public Library of Science Medicine.
The special issue, edited by David Henry, of Newcastle University in Australia, and Ray Moynihan, an Australian journalist, reports that conditions such as female sexual dysfunction, attention deficit hyperactivity disorder (ADHD) and “restless legs syndrome” have been promoted by companies hoping to sell more of their drugs.
Other minor problems that are a normal part of life, such as symptoms of the menopause, are also becoming increasingly “medicalised”, while risk factors such as high cholesterol levels or osteoporosis are being presented as diseases in their own right, according to the editors.
“Disease-mongering turns healthy people into patients, wastes precious resources and causes iatrogenic (medically induced) harm,” they say. “Like the marketing strategies that drive it, disease-mongering poses a global challenge to those interested in public health, demanding in turn a global response.”
Doctors, patients and support groups need to be more aware that pharmaceutical companies are taking this approach, and more research is needed into the changing ways in which conditions are presented, according to the writers.
Disease-awareness campaigns are often funded by drug companies, and “more often designed to sell drugs than to illuminate or inform or educate about the prevention of illness or the maintenance of health”, they say.
Particular conditions that are highlighted in the journal include sexual function in both men and women. The prevalence of female sexual dysfunction, one paper claims, has been highly exaggerated to provide a new market for drugs, while the makers of anti-impotence medicines, such as Viagra and Cialis, have been involved with their presentation as lifestyle drugs that can boost the sexual prowess of healthy men.
Ordinary shyness is routinely presented as a social anxiety disorder and treated with antidepressants, while newly identified conditions such as “restless legs syndrome” — a constant urge to move one’s legs — are presented as being much more common than they really are.
Richard Ley, of the Association of the British Pharmaceutical Industry, rejected the accusations, pointing out that Britain has firm safeguards against disease-mongering. Many of the authors’ criticisms, he said, were aimed squarely at countries such as the United States, where pharmaceuticals can be openly advertised directly to patients.
“Drug companies are not allowed to communicate directly with patients, and we do not invent diseases,” he said.
“We provide information that there are treatments out there that might help certain conditions, but at the end of the day it is down to health professionals to decide if they are appropriate.
“The best safeguard is that the doctor who knows the product and knows the patient’s history is the one who decides what to prescribe.”
This is sorta occuring in dystonia with Botox, now DBS. Thoughts...?
Source UK Times
beka
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Permalink Reply by beka on
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Have we accomplished this ??
A lack of consensus among dystonia experts concerning diagnosis and treatment guidelines has caused confusion for both consumers and practitioners. In recent years, however, there has been an increase in national activities designed to disseminate current information about dystonia ,refine the national research agenda, and create standards of practice for routine screening, individual testing, and treatment. Collectively, these activities can help move dystonia to the national agenda of Awareness Campaigns. Are we doing all this ? Enough ??
What do you think ??
beka
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Permalink Reply by beka on
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Sparks -
The following just came out about philanthropy. Ok, Global push for dystonia ???
beka
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Cures for Neglected Diseases Require Funding, Report Finds
A global push to tackle diseases such as malaria and tuberculosis is gathering steam, a new report finds, largely due to an influx of private money that has subsidized the work of drug companies, the Washington Post reports.
Published by the London School of Economics and Political Science, the report found that drug and biotechnology companies have launched more than sixty projects in the past five years in an effort to develop new treatments for diseases that primarily afflict developing countries. But if wealthy donor governments don't start contributing more to the effort, which to date has been led by private philanthropies like the Bill & Melinda Gates Foundation, the work could stall before clinical trials are concluded.
Among other things, the report found that more than half of the nearly $255 million contributed as of April 2005, the most recent figure available, had come from the Gates Foundation. And although the United States has contributed $16 million to such efforts, putting it ahead of other governments, contributions from the world's governments combined have been dwarfed by the Gates Foundation's $159 million. "Who's actually funding this is essentially Bill Gates," said Mary Moran, principal author of the report. "Now we need the public to step in and take it to the next stage."
Historically, pharmaceutical companies had been reluctant to invest in diseases endemic to poor countries because people in those countries seldom were able to purchase drugs or treatment. But after being criticized for their anemic response to the AIDS pandemic of the 1990s, drug companies began to reconsider their approach to diseases in the developing world — spurred on, in part, by the arrival on the scene of private donors with tens of millions of dollars for drug-development work.
While the influx of funds from private donors has been successful at jump-starting research, the report noted, it is far from certain that those efforts can be sustained as promising drug candidates enter the final, expensive stages of testing. To put that work on a sounder financial footing, Moran called on wealthy donor governments to pledge $7 million a year to a special fund designed to supplement privately funded efforts, which could result in $200 million a year for drug development and testing. "If you can't get $7 million a year," said Moran, "we should just stop having these conferences and say we don't really care."
Gillis, Justin. “Cure for Neglected Diseases: Funding.” Washington Post 4/25/06.
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Dystonia in underdeveloped countries ??? How is it for those in those countires ?
beka
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Permalink Reply by ramona on -
Hear, hear! This is an interesting thread, Beka and Sparky, and one I have recently been wondering about myself. There is a "support group" for dystonia patients in a city a couple of hours from my home and I have attended two of their meetings. At the first one I attended, it was declared that they were going to begin emphasizing the "support" aspect of dystonia more and the "awareness" aspect less. However, I have not seen that happening at all, much to my dismay. As a matter of fact, they have begun pressuring the members more and more to participate in "awareness" activities (booths at fairs, passing out flyers, speaking at community meetings, etc).
Personally, I do look for ways to share my knowledge about dystonia with others. I talk to friends (and strangers!) about it, educate medical community members when appropriate, ask someone in public if they have been diagnosed with dystonia if it looks like they may have it (in case they have gone without a diagnosis), and I also arranged for a friend who is a reporter to do a major local story on dystonia. However, I do not feel that everyone should have to be doing this. For some, it is all they can do to get through one day and on to the next. Those folks should not be pushed to go out and do everything they can to increase "awareness" of dystonia. That seems to be what is happening, though. If we are not participating in some type of awareness activity, then we are looked down upon.
Ramona
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Permalink Reply by beka on
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Hi Ramona-
I know that many of the DMRF local support groups have emailed me asking for batches of C4D brochures, magnets, pens etc. for Awareness events coming up in September. It makes me wonder if all these leaders who are coming to me asking for free material- then is this free material from other dystonia groups not being given out to these local support groups ? This bothers me a bit since I just sent close to 100 brochures for an Event; it was recipricated by obtaining mailers for requests for donations and information about the event - all supported by the major pharmaceutical companies.
The least I expected was to at least thank C4D for the free material.
I guess I'm not Allergan !!! Or Merck !! Or Pfizer !!!
I tend to agree with your perspective that patients suffering from the disease shouldn't be enforced to go out an publicize dystonia. Especially if some of the nonprofits are affiliated with major Public Relations Marketing Firms. Shouldn't they be increasing " awareness " ????? Living 24/7 with dystonia is enough...
beka
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Permalink Reply by Thorns on -
Sparky,
I have to disagree with you, the more people become aware of the word dystonia maybe people with this disorder won't take so long to get diagnosed and not feel like they are so alone. I am not a caterpillar and can take a different path to get to the meat of this thing called dystonia, you just have to look at this forum to get the awareness. Awareness is being able to one day say to someone I have dystonia and not getting a funny look but someone saying I've heard of that. It maybe a long time before this happen's but it will come with perseverance and alittle thing called hope. Thorns
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Permalink Reply by beka on
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True - Thorns - about Hope , but don't you sometimes get a weeny-tiny bit tired of all the waiting for awareness ???
I know I do - even get tired explaining dystonia to the world constantly. Especially now with freaky wires in my head. That makes things even more difficult. But, " Not to Go Forward is to Go Back ". Yes ?
beka
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Permalink Reply by Thorns on
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Beka, The glimmer of hope is when I tell someone I have dystonia and they tell me they have a friend or knows someone who also has dystonia, that's the awareness. The more we with dystonia are not holding back when someone ask's us what we have and tell's it like it is, is when this will change. How many of us for years have not been honest with what we have, I for one can say I have when I was younger I was more self-conscious, but I've made a decision that no more will I be silent. The thing is awareness may take time but like many things there is a domino effect, you talk to someone they talk to someone and so forth. Thorns
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Permalink Reply by linda on -
I'm not sure where this fits in here, but my issue in regards to awareness is in the general medical field. Example being that back in June I went to the ER unable to swallow because of my botox injection (long story) nobody in the ER nurses and doctor had any idea what dystonia is. Another problem is find a primary doctor that has knowledge in this area. Why and how come, is dystonia not known by many of our medical professionals, isn't it the third most common movement disorder and don't they cover that in medical school? I don't mind being awareness to the general public but it is frustrating to have to do it in the medical field. My concern is that my neurologist is an hour away and in medical emergencies putting my life in the hands of people who know nothing about dystonia, In Sept I'm going for DBS and I would like to figure out how to being awareness to my local area hospital and locate a local doctor with some knowledge about dystonia and DBS that can treat all my other illnesses as needed. So any suggestion on how to bring awareness to the broader medical communities outside of neurologists.
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Permalink Reply by Thorns on
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I'm helping my husband at the moment get this motorcycle poker run organized for next weekend so I've been busy getting prizes and setting up stops along the route. With every letter written for a prize there's the web site for the dystonia fountation of canada and a little brochures giving a brief message about dystonia. At the ride we will be having a gift bag for each rider with a tee shirt with the dystonia D on it and the Dystonia Fountain of Canada so when these people wear this tee shirt it will be seen and also in the bag there will be a brochure for them to read and hopefully send in a donation. We have posted flyers around the city and out skirts so we get as many people as possible. Last year was our first year with about 40 rider's we're hoping for 100 this year. We also have a walk-a-thon in the spring, this year was our 13 yr. and every year it's gotten better with new people and raising more funds for research. We've been in the newspaper's and on TV, the other co-leader of our group has a Buskerfest in Oct. at a grocery store in her town where she get's young musicians to play from the high school while she hands out brochures and gets donations. This is just a few ways to get the word out. Thorns
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