TOO HOT TO HANDLE!!!
The workshop I had hoped to present at this year's Rocky Mountain Regional Conference was tentatively titled "Just Say No - To Pharmaceutical Gifting". For a bit of historical background on this workshop please refer to the attached piece entitled "Just Say No" (Resolute, November 2000.). Despite contrary claims by "conference officials" I stand by everything in that piece. The current spin these officials are putting on my being denied a workshop slot was that I was unwilling to negotiate a "balanced" presentation that would have included representatives from the pharmaceutical industry extolling I presume the virtues of gifting on their part to health care providers and educators.
All history is revision I suppose, but suffice it to say I never entered into any negotiations, with the still anonymous workshop committee, about format and the inclusion of pharmaceutical industry spokespersons. Paraphrasing a recent e-mail I received from one of the conference planners it was suggested that perhaps I could present something at "another location" where I "could reach people and raise awareness and the conference could avoid offending sponsors". The "sponsors" referred to here are of course pharmaceutical companies. It is virtually impossible to put into words how slimy this all makes me feel! Trust me the thought that I might "offend" a pharmaceutical company is not going to result in any lost sleep. Any AIDS activist who worries about offending pharmaceutical companies needs to do us all a favor and look for work elsewhere! Suffice it to say I am reminded of the great best-selling book by Jim Hightower: “There's Nothing in the Middle of the Road but Yellow Stripes and Dead Armadillos!”
Let me cut right to the chase and say that I do not believe that care providers (nurses, doctors, social workers etc.) and AIDS educators/advocates/activists (conference planners, newsletter editors, community based leaders etc.) are above being influenced by aggressive marketing. Pharmaceutical companies spend in excess of ELEVEN BILLION DOLLARS annually on marketing and promotion of their products because they believe the effort is worth the return. One of the many things that I am, on occasion, accused of is being "unrealistic". Critics will say or imply "grow up Gourley and smell the coffee". Well I might say exactly the same to those who feel pharmaceutical promotion and marketing does not affect them. Physicians in particular feel that they can feed at the trough of pharmaceutical largesse without the slightest bit of influence. This sort of arrogance might be funny if it was true, but it is not!
So what form does pharmaceutical-gifting take locally? Well for starters I would refer you to the promotional brochure for this conference, page 4, the Conference Sponsors. Agouron, Abbott, Bristol-Myers Squibb, Merck, DuPont, Roche, Glaxo Wellcome, Gilead, Roxane and Serono all manufacture drugs used by persons with HIV/AIDS. Some would argue that it is about time that "we " get some of the money back from these companies, but remember that even a gift to the most deserving does contribute to the very significant cost of these drugs. There is no free lunch!
Other types of gifts include everything from pens and post-it-notes with a drug name on them, to pricey all- expenses-paid junkets, usually for physicians but not always, to resort destinations. The poor physician being pulled "kicking and screaming" from their loved ones, spends a few hours expounding "expert opinion" on a drug manufactured by the company footing the bill. In addition to having virtually "all expenses paid" there is usually a handsome honorarium. An interesting side bar on these little events is that they never happen in Minneapolis in January or Phoenix in August.
Just this month I received an invitation to become a member of a speaker's bureau for a drug company manufacturing several common HIV medicines. The invitation to the training arrived Federal Express and according to the letter was sent in the same fashion to 150 other Nurse Practitioners and Physician Assistants around the country who treat persons with HIV infection. Speakers in this bureau would then be able to present lectures (and be paid very well for their time!) on behalf of this drug company "highlighting" their drugs of course. Oh, by the way, the training is going to take place in Orlando Florida with round trip airfare, hotel accommodations, meals and "incidental expenses" covered! It was actually a bit comical because it came addressed to me as "Ms. Pat Gorley, NP". I plan to return it with regrets and the correction: "That's Mrs. Patrick Gourley to you, you slimy bastards"!
Another interesting give-away is the "educational forum" heavily subsidized by pharmaceutical companies. I have attached a flier of one recent local educational offering, primarily for health care providers, with the stray activist invited perhaps. I have blacked out the names of the presenters not because I don't think you should know who they are, but rather because I don't want you to think they are the ONLY ones who do such presentations, they are not! There may be an update of this same conference some time in the future for the broader community that will be aimed at persons actually infected with HIV and on chemotherapy for the infection. You can be damn sure though it won't be in the Tudor Room at the Wellshire Inn and no hosted bar!
The breaking news out of this conference this year was a change in the treatment guidelines now recommending that HIV therapy be initiated later in the course of infection, the primary reason being the dramatic and far reaching side effects encountered when on these chemotherapies for any length of time. These guidelines in my mind provide the last shovel of dirt on the broad "hit hard /hit early" approach to HIV management. This change in guidelines of course is not something most of the pharmaceutical companies find to their benefit, by starting later less drug is sold.
An argument frequently made is of course that this is how the pharmaceutical industry works! They are in the business of making money! They need to be able to market their products. "Unrestricted educational grants" provided by drug companies for example are forms of marketing and the principles of human behavior that this is based on are the same whether you are selling potato chips or AZT. This is, I think, the root of the problem. I believe that it is inherently wrong that medications meant to fight disease and/or relieve pain and suffering are developed for profit at the expense of those who need them. You might be able to talk me into the sale of Viagra, Rogaine, wrinkle creams or various anabolic steroids for a profit, but not therapies for breast cancer. I simply believe that it is obscene that the single most profitable industries in the world are the pharmaceutical companies. It is not the only way to approach the issue of drug development but rather the one we have allowed to happen. Call me an idiot but I truly believe that there are plenty of people willing to be involved in the development of drugs for a modest wage that is taxpayer subsidized and government regulated. How terribly depressing and absolutely wrong headed to think that the needed motivation to develop new therapies for disease and suffering can only come about through motivation by the almighty dollar.
The sort of revolutionary change that would need to take place in society in order for drugs to be developed and made readily available to anyone in need is a very daunting task that unfortunately is not going to happen anytime soon. So what do we do in the meantime? Pretty simple really, for starters quit contributing to the problem on an individual basis! There is plenty of room for this sort of "action" within the AIDS establishment. Talk about an activist movement that has sold its soul. It is high time to start shaking things up again and what better way than beginning to purge the pervasive and insidious influence of the pharmaceutical companies from AIDS activism and education.
I really believe that much of what passes for AIDS activism these days is thinly veiled selfishness. The are many common universal health-related issues that we could be doing much better coalition work on than we are. The price of pharmaceuticals for everyone in the country comes quickly to mind. One of the interesting rallying cries these days is that AIDS is not over. A big part of the reason perhaps that it no longer registers as an issue for many people is that they do not see how it is their problem anymore. Well if we want people to continue to see AIDS as an issue affecting everyone maybe we need to get our heads out of our own asses and tune into a few of the other pressing health issues facing humanity today.
There are a couple of ways I would suggest to start, other than of course just saying NO to pharmaceutical gifting in your own life. The first might be to look into supporting House Bill 1108 sponsored by Rep. Tom Plant (D) of Nederland. The purpose of the legislation is to provide monetary relief for pharmaceuticals for the poor and elderly of Colorado. Though it is not a radical (to the root) solution to the problem it is a start. It would require pharmaceutical companies to reimburse local pharmacies for the difference between the regular price of a drug and its negotiated discount price. The pharmaceutical industry is opposed and already fighting this, a good reason to get behind it!
The last suggestion I have in this piece is an attempt to do something to help get HIV medicines to the vast majority of people infected in the world, particularly in Africa! This is an issue that will probably not receive much attention at this conference, because we do not want to offend "our sponsors". I have included several pages from a recent issue of John James AIDS Treatment News. The piece outlines the upcoming "Global Day of Action Against Drug Company Profiteering" on March 5th. There are several action items included if you choose to participate. I would suggest that the conference sponsors announce this event and perhaps call for a few minutes of silence as a gesture of solidarity for the millions dying of AIDS with no access to treatment throughout the world. Unlikely, however, since they seem bent on keeping the cash flowing for a conference that long ago ceased to have much relevance for persons in this community living with HIV infection.
I would also like to take this opportunity to extend an invitation to any interested parties in joining me in trying to pull together an educational conference on AIDS issues relevant to our community for 2002.1 promise we will not have an anonymous workshop committee and there certainly will be no pharmaceutical sponsoring in any form. You can reach me by e-mail ROSEBUDEAD@,aol.com or my work phone 303-436-3115.
Pat Gourley, February 2001.