If we want to be free then we have to be willing to assume absolute responsibility for everything that we do.” Andrew Cohen, Embracing Heaven and Earth.
I recently submitted a workshop proposal for the Sixteenth Annual Rocky Mountain Regional Conference on HIV Disease, in February 2001. The title of the workshop was “Just Say No – To Pharmaceutical Gifting”. The workshop was to address and facilitate discussion on what I believe are issues vital to the HIV community; specifically the reality that the intense marketing activities by pharmaceutical companies, that frequently takes the form of “gifts” to care providers and educators, directly contributes to the cost of the drugs. This is done without the permission of the consumers of these HIV medicines. I also, and more importantly, wanted a public discussion of whether or not this aggressive marketing was affecting the local discussion of current important treatment issues. (Issues such as treatment interruption, pulse therapy, when to start therapy and what to start with.) I planned a half-hour presentation to be followed by an hour of participant dialogue.
I received a letter, hand delivered by a spokesperson for the workshop selection committee, stating that they were unable to schedule my workshop. They did not really say why except to mention that there were a number of “excellent submissions received and that limited slots were available”. This particular topic has never, to my knowledge, been addressed in a workshop format in the previous 15 years of conference history. The designated spokesperson did say however that the committee felt the topic was “too hot”. He also alluded to the fact that the conference was financially strapped and depended heavily on the support received from the pharmaceutical companies in order to produce the conference. The spokesperson also said the selection committee members wished to remain anonymous! So much for dialogue and discussion!
Without begging the question here folks let me state right off that this is exactly my point and the point of the workshop! Pharmaceutical gifting is nothing more than the blatant marketing of their products. They do expect something in return and it is affecting local dialogue! I do not for a minute think that any of the local drug company representatives is stupid enough to say “don’t let Gourley do this workshop or you are cut off. More likely this was a decision made by a rather politically naive committee.
Again, my biggest concern is that this relentless marketing is affecting the local discussion of issues vital to those of us who have to take the drugs sold by these companies! You see, if there were only a couple of drugs made by the same company or you needed to always take all the available ones there would be significantly less marketing and a lot fewer “gifts” you can be damn sure. However, we do have choices, not only around which drugs to take but also when to start and when to stop or at least take a break! If you aren’t taking the medicines they aren’t making money! Pretty simple economics here folks and the fodder for a great discussion I thought!
Now before some crazy latches on to this to reinforce the tragically misguided notion that HIV does not cause AIDS or that you can treat it exclusively with bean sprouts, let me say loud and clear that I am here today bitching about pharmaceutical gifting because their products have not only prolonged but probably at this point saved my life. I know I am just an insufferable ingrate! However, the very real and numerous side effects of these medicines warrant a more sophisticated and ongoing look at their use and management.
To try and give you a little reference on the magnitude of the issue, with AIDS medications being only a small part, let me quote from a recent Journal of the American Medical Association article. (JAMA 2000; 283:373-380.) “More than $11 billion is spent each year by pharmaceutical companies in promotion and marketing, $5 billion of which goes to sales representatives… It has been estimated that $8,000-$ 13,000 is spent each year on each physician.” Physicians of course are not the only beneficiaries of pharmaceutical “gifts”. In the AIDS arena there has, primarily in the past five years, been a trickle down of stuff and money to nurses and community activists. The real “good stuff though does usually go to the doctors, for example all expense paid junkets to resort destinations as consultants, being asked for feedback on the drug manufactured by the company picking up the tab!
We should remember that the entire phenomenal, grassroots effort that evolved to deal with the AIDS crisis happened largely without government and certainly not pharmaceutical monies. How many years was it before the president of the United States (Ronald Reagan) even uttered the word?
So how does this translate locally? There are countless examples, many of which were going to be part of my workshop presentation at the Rocky Mountain Regional Conference. I had no intention of naming names; I believe in protecting the guilty and .only trying gently to aid in their enlightenment on this issue. If you are interested look for me at the conference February 28th, where I’ll be attempting to hand out copies of the talk that you will not get to hear presented!
Let me give just one example. I belong to a local group of nurses involved in AIDS care and the organization has frequent presentations at relatively upscale restaurants where various drug companies pay for the meal and an honorarium for the speaker. I have on several occasions attended these functions and eaten the food. On one occasion I even accepted an honorarium to speak, though I did try initially to get them to write the check to a local non profit organization I am particularly fond of, no go for reasons still unclear to me. I was brought up Catholic so I believe confession is great for the soul.
I have raised the issue as to why we have these nursing meetings in these settings. The rather interesting response (and I have heard this from other individuals, groups and organizations as well) is “nobody would come if we didn’t have food”! Well I must respond “has it ever occurred to you then that perhaps you have nothing to say”!
In the early 1980’s when we were doing the initial forums on AIDS they were not paid for by any drug company, there was no food, no speaker being paid a handsome honorarium and it was standing room only! We did however have something that those in attendance wanted and that was new and vital information pertinent to their lives and well being!
I no longer accept “gifts” of any sort from drug companies because I do not feel I am above influence. There are many egos in the community however who believe they can feed at the trough and not be influenced. More power to them!
One last comment, and then I would only ask that you look for me at the conference in February. It regards the illusion of “education” provided by the drug companies around their various products. If you receive care or education from someone who receives their knowledge about HIV and the drugs to manage it from drug company representatives consider looking elsewhere for care and information! There is no such thing as “an unrestricted educational grant”, whether it is used for conferences, community forums or the publication of newsletters.
Oh and one last quote, this one from Mother Theresa! It has to do with creating change and what the individual is capable of doing.
“I never look at the masses as my responsibility. I look at the individual. I can only love one person at a time-just one, one, one. So you begin. I began-I picked up one person. Maybe if I didn’t pick up that one person, I wouldn’t have picked up forty-two thousand. The whole work is only a drop in the ocean. But if I didn’t put the drop in, the ocean would be one drop less. The same thing goes for you, the same thing in your family, the same thing in your church, the same thing in your community. Just begin-one, one, one.” (Excerpted from After the Ecstasy the Laundry, by Jack Kornfield.)
The next time you are offered a pharmaceutical “gift”, no matter how small, just say “no, thank you”. It can make a difference.