A lot has been said in recent weeks about a Human Immunodeficiency Virus (HIV) “cure” and breakthroughs with research and treatments, but the conversation has often included incomplete and even misleading messages. Given the fact that the number of new cases has actually been increasing, accurate education and dissemination of information continues to be of primary importance to health care professionals in the field. The traditional stigmas attached to the disease and those infected continues to be a barrier to effective communication. In particular, with many gay and bisexual men, conversations about sexual orientation are not even being had, much less specific discussion of high-risk activities. With the healthcare situation in the United States, more and more people are being forced into plans which give few options with respect to choosing providers, and long-term doctor-patient relationships are becoming a thing of the past. Without those types of relationships, difficult subjects like HIV risks and sexual behavior are seldom broached. Despite the fact that knowledge about the prevention and treatment of the disease has increased exponentially over the last couple of decades, the information gap remains huge.
It is not only in the doctor’s office that the conversation about HIV and the messages about cures and treatments are incomplete. With the announcements in the media of babies born positive, and even one leukemia patient who was positive, being “cured” of the disease, inaccurate conveyance of the facts has led to a great deal of misinformation. A false sense of security has been created in people living high-risk lifestyles. Many are even coming to equate HIV with long-term conditions such as diabetes, seeing it as no more concerning and taking the view that it is just a matter of ‘maintenance medication” required to keep the symptoms at bay. This acquired apathy is one contributing factor to the numbers saying that new cases are on the rise among gay and bisexual men. The fact that in almost every case, the “cured” children were actually merely rendered undetectable by virtue of suppression drugs, and immediately began testing positive upon cessation of the treatments is reported on far less frequently than the encouraging initial results. The articles heralding a cure based on the fact that one patient, whose treatments involved multiple transplants to treat leukemia in addition to the HIV, and whose results have not been repeatable, have added to the false sense of safety.
There is no cure for HIV. Research is showing some promising results, and treatments have reached a level of sophistication where patients who are following a regimen of medication and lifestyle are even able to reduce their viral loads to the point where they may even test negative and be completely undetectable. The fact, however, is that undetectable is not uninfected, and a cure that cannot be duplicated for other patients is not a cure. When the level of information currently available exists and the number of cases continues to rise, experts from the CDC to political activist groups all at least agree on the point that education is lacking and the message being received is not a complete picture. While none of those experts are calling for a return to the days of 25 years ago when information was scarce and scare tactics was the norm, there is universal agreement that the need for increased awareness and information remains paramount. Despite this universal agreement, solutions have been slow to surface, and even slower in implementation. Because much of the general population lacks any real context for the issues surrounding living with HIV, a sense of urgency is difficult to generate. Because those who do have that context realize the level of personal disclosure and exposure required to implement an effective treatment plan, it is difficult to come to the level of trust required to commit to that. It is a situation which, if not remedied, could see the numbers of infected continue to rise.
Social stigmas, institutionalized stereotypes, inaccurate reporting and widespread breaches of privacy are all factors contributing to the current rise in new cases. If the conversation about curing HIV and the messages about seeking and staying in treatment continue to be incomplete and ineffective, the situation may well continue to compound and grow worse. In terms of creating awareness, health care professionals seeking to bridge the communication gap know that they will need to reach not only those at risk, but those within their own community of physicians and policy makers to address the barriers on both sides if they are going to succeed.
By Jim Malone