There has been considerable discussion recently of problems of treatment access and the inadequacy of currently available treatments, but precious little public discussion of the growing role that the pharmaceutical industry is playing in treatment education for HIV-positive people. Under the well-intentioned banner of education and treatment advocacy, the pharmaceutical industry has begun to spread its tentacles in unprecedented ways. Treatment education is indeed an important need at this stage of the epidemic, but there are profound questions about where that information comes from and whose interests it promotes.
The pharmaceutical industry has a legitimate, long-term stake in issues regarding HIV therapy. There would be no protease inhibitors and other advanced therapies without industry. Government's work generally focuses on basic science, primarily learning how HIV causes disease, but it lacks the capacity for actual drug development.
Putting aside the critical topic of drug pricing, it is reasonable for industry to expect to see a fair return on their investment. Like it or not, it is the way our economic system works. Therefore, it would be naïve not to expect industry to competitively and aggressively market its products.
The question is just what constitutes legitimate marketing and what is, instead, an inappropriate intrusion into public efforts to educate HIV-positive people, caregivers and the many case managers and treatment advocates hired by AIDS service agencies. Left unchecked, industry's growing influence in this area threatens to upset the balance of control over the practice of medicine. In short, we need to ask where the line is drawn between marketing and education. The pervasiveness of industry support makes it a difficult issue to raise -- few if any major agencies can afford to utterly reject industry funding -- and Project Inform is not interested in criticizing the choices made by others. But the issue must be addressed.
Pharmaceutical companies have always wined and dined doctors and cluttered their offices with sales materials, but these efforts go far beyond their brochures. At best, they help inform physicians of advances in medicine and how best to use new drugs. At worst, they are biased marketing efforts designed to sway doctors' opinions with vacation trips, gifts, expensive dinners, free samples and (hopefully) everything short of outright bribes. To be fair, it is reasonable to assume that doctors have adequate training to objectively evaluate what they hear and sufficient integrity to act in their patients' interests. Whether they listen to their inner wisdom or the drug company pitch is a matter of conscience. Historically, though, efforts to influence the consumer's choice of therapy ended at the doctor's door.
A major change in the law took place a few years ago which permitted drug companies to engage in "direct-to-consumer" marketing, resulting in aggressive ad campaigns in televised and print media. The companies argued that this would help educate consumers on medical matters. The physician, they argued, was still the gatekeeper.
The pharmaceutical industry also has a history of meeting with AIDS activists to review medical data and get input on drug development and patient assistance strategies. At such meetings, activists often had a chance to ask more questions than was possible at scientific conferences. Surely, industry often saw these meetings as an opportunity to influence activists' points of view, but to the extent that the meetings included people from many different groups, there was little opportunity for industry to corrupt individuals.
Some may have taken industry's bait, but most did not. And where people were seen as becoming too closely tied to industry, they were watched more carefully by their peers and their roles as "representatives" were called into question. Over the years most treatment activists became highly knowledgeable about AIDS research and were typically the first to challenge the views and behavior of drug companies.
Industry is now trying to extend its span of influence directly to almost anyone working in the field of AIDS who might be in a position to impact the treatment choices of HIV-positive individuals. Prime new targets include:
Industry is especially interested in case managers and treatment advocates who help coordinate patient's relationships with medical and social care systems. To industry, people in these jobs represent new gateways to a largely untapped "market" made up of the harder to reach populations. While everyone agrees on the need for wider treatment education services, several companies have taken advantage of this opportunity and are now directly running or hosting educational programs aimed at people in these gateway jobs. The programs claim to be balanced and fair, but there is little question that many, if not most, are designed to deliver either subtle or obvious messages about the companies' products.
These programs for "intermediaries" take multiple forms. Some are simply "community meetings" hosted by pharmaceutical companies in major cities. People in the targeted jobs are carefully identified and individually invited by industry to attend these meetings. Another approach arranges broad-based meetings with specific agencies, hoping to catch in the net everyone who might have direct access to the patient population or the messages delivered to it. Such meetings often come with the hint of being some kind of agency inspection tour for potential grants and funding. Administrative and development personnel, as well as program managers, are asked to attend.
But whether the meeting is held for individuals, agencies or local groups, the outcome is largely the same: a company's pitch about the importance and competitive value of its products, along with the implication that the company might do something for the agency or groups involved. Very often the companies view their roles as being responsive because, indeed, community groups look for help and support in providing treatment education. Whether this requires letting the fox in the hen house, however, is another matter.
Historically, scientific data have always been presented primarily to medical and scientific peers for review. That way, challenges to the analyses of data was guaranteed and overt product promotion was quickly called to task. Not so in these new programs, as the only medical or scientific personnel present are usually those working for the company. No one should expect a company presentation to be objective or unbiased. It is their job to present their products in the best light possible. To say that such efforts sometimes stretch the truth is an understatement.
Through just these two vehicles, activists case managers, administrators, program managers and treatment advocates are being exposed to slick, carefully targeted sales pitches, thinly disguised as "treatment education," while a carrot of implied funding potential whispers in the background. Such presentations to agency workers are but the first step.
From the very beginning of the treatment era of the AIDS epidemic, companies jumped in (with varying degrees of integrity) to support development of educational materials on a number of topics, such as prevention, HIV 101, etc. Some have done a fine job while keeping their own interests at bay. Others have not.
Industry has today moved lock, stock and barrel into the AIDS field industry, supporting the total existence of a number of newsletters through advertising or targeted support. While advertising doesn't necessarily corrupt the writers or the content, it does use the relationship between the patient community and nonprofit agencies as a conduit for sending industry information directly into patients' homes. And if the newsletter source allows itself to become primarily dependent upon such ads for support, it exerts a subtle but powerful pressure to avoid displeasing the funders, since the alternative may be to go out of business.
Most companies offer a variety of support and grant programs to help AIDS agencies. There is nothing inherently wrong with this, and like most groups, Project Inform seeks industry grants. When well managed, such relationships stop far short of letting the companies influence what agencies do or how they do it. A new expansion of this is that industry now often pays for the creation of treatment education programs. Well enough, if the writers are allowed to maintain their independence and editorial distance. But not every agency is in the position of strength needed to negotiate such murky waters.
Of greater concern is that industry goes beyond providing financial support and sometimes simply writes the programs for some agencies. The appeal is obvious, especially for groups that lack staff support and time to develop their own materials. Industry comes along and delivers a slick, packaged product, ready for immediate use. Sometimes, at least a semblance of community input is allowed into the program, but the end product is still primarily the work of the company, not the community group.
Many feel this is an improper intrusion into community affairs, but more importantly, a dangerous precedent. The offer to provide training packages is often accompanied by significant levels of financial support to the agencies involved, intended to help defray the cost of presenting the programs. For groups trying to serve their communities on a limited budget, it is an offer that is hard to refuse.
Examples of industry programs present a varied picture. Some seem reasonably well balanced. But others include misinformation and distortions, either by intent or accident. Others contain what seem to be images calculated to provoke culturally rooted emotional responses in targeted communities. Though these programs don't necessarily pitch a specific product by name, none seem to acknowledge that one of the reasonable choices available to people is to choose NOT to use treatment for some period of time. Nor do they address the strategy and drug resistance questions so key to wise treatment choices. And many contain product-specific messages or implications by describing strategies that can only be engaged by using the sponsor's drugs. The message, even when it is not directly competitive against other company's products, is simple and clear:
Just whose interests are served by such messages and how do they help people make wise treatment choices?
There is an important need for educational outreach to hard-hit populations, and treatment is one of the things that must be talked about. Many agencies are struggling to find the money to provide such services. Many do not have the staff or the time to develop professional programs of their own. So when industry comes knocking, it looks like the answer to many problems, especially if the company says all the right things about community input, objectivity, etc. And at least some of the companies are reasonably fair and balanced in their approach.
No one faults agencies for their participation. They are trying to meet a real need, and many if not most know how to inject a sufficient degree of skepticism into the process to counter the drug company pitch. But not always. Even with the best intentions, it is hard to avoid the influence of the pharmaceutical industry.
If industry is sincere about wanting to provide support for community education, it must learn to do it in ways that separate proprietary interests from generic treatment messages. If the marketing departments can't live with that, they should take their money elsewhere and community agencies must be prepared to reject the offer. Ideally, industry should not produce or write the educational programs, but instead only provide resources -- no strings attached -- to agencies or groups developing the material. Though still fraught with difficulties, having a strong and diverse community input process into anything produced by industry makes a "second best" approach.
Perhaps a few good, culturally relevant programs may be all that are needed. By keeping the number small, the potential for catching any abuses would be greatly enhanced. There is perhaps no need for multiple companies to write or support different programs at all. If the message is truly generic and noncompetitive, maybe all of industry should contribute to a single fund for the development of a limited number of independently reviewed programs.
AIDS communities must begin to debate and challenge the role of industry influence. This doesn't mean agencies need to reject industry funding. On the contrary, as the one most profiting from the epidemic, the pharmaceutical industry indeed should be offering support back to the community. Support must come with the fewest possible strings, and should completely detach itself from the direct creation of educational materials by industry. If we fail to draw a line in the sand over these rapidly evolving practices, real damage will be done to the independence of our nonprofit sector as well as to the welfare of our constituents.
Industry control of treatment education materials is but the tip of the iceberg. Just below the waterline is a large cadre of new industry employees hired right out of the AIDS and activism communities. Whether such people represent an infiltration of industry by the community -- or the other way around -- remains to be seen. In a number of other diseases, the pharmaceutical industry is the primary source of support for services like education, hotlines, even support groups. Unless this sounds like an acceptable future for the AIDS community, a large and critical debate must begin, right now.