"Withholding information on the assumption that it will be misused is not only misguided, it is unethical."
Like most PositiveLite.com readers, I’ve been following the undetectable = untransmittable saga with interest. I was thrilled to read about the new statement from CATIE, which endorses this clear message. This ground-breaking change comes directly from the efforts of people living with HIV themselves. It represents a fine example of the profound work of people living with HIV and illustrates the importance of the work of community activists in translating research and information from the scientific community to the people who are most affected by the disease.
From the UK, where all the main HIV and Sexual Health organisations seem to have easily adapted to this exciting new research development, it seems strange and unfortunate that some Canadian and American organisations are so reluctant to do the same.
While I’ve presented some of my own theories on why this is, it also seems that organisations fear that they will be encouraging unprotected sex and thereby increasing opportunities for new infections of STIs and HIV. This fear seems to stem partly from the assumption that this news will encourage or endorse people living with HIV to become sexually reckless.
I have to question the logic that it is people who are aware of their HIV status who are responsible for spreading the virus. In fact, the growing understanding seems to be that it is people who are unaware of their status who pose the most risk. These are individuals who will have a high viral load and will be very infectious but may not see the point in using condoms since they don’t realize that they have been infected.
In fact, this information prompted Terrence Higgins Trust to create a new brochure through the ‘It Starts With Me’ Campaign, which explains that sex with an infected partner who has an undetectable viral load poses ‘NO RISK’ while sex with a partner who says ‘my last test was negative’ poses a ‘VERY HIGH RISK.’ In the latter case, the brochure explains: ‘He recently got HIV but doesn’t know it. Levels of HIV in his body could be very high, so he’s VERY INFECTIOUS.’
Despite this messaging, it is not uncommon to bump into unfortunate misperceptions of people with HIV who are, at best, careless, or at worst, out to deliberately infect others. This kind of stigma is not just historical; it is alive and well. For example, only last month the Daily Record posted about a police manhunt for an ‘HIV Fugitive’ who was wanted for deliberately infecting his ‘male lovers.’
There will always be people on the fringes who commit unethical or illegal acts, but we should know by now not to base our health promotion strategies on these stigmatizing stereotypes.
In fact, while HIV-positive people are often painted by the media as reckless, my experience of working with people with HIV has been the opposite.
"For many people, the fear of infecting another person – however negligible – was so intense that celibacy seemed a better option taking an even tiny risk."
A few years ago, PositiveLite.com published findings from a Community Based Research Study we ran at HIV/AIDS Resources & Community Health called Show Me the Love: Understanding the Barriers to Sexual Intimacy Among People living with HIV. (You can see the full report here).
We chose to run that study because common problems for our client-base were loneliness and isolation. Most were single and experienced social isolation and barriers to sexual intimacy. Our efforts to provide HIV education did not seem to help and sometimes had the unintended effect of making people even more afraid of spreading the virus, even though we already were able to confirm that an undetectable viral load significantly lowered the risk of infection.
The fact that HIV seemed to result in, for our clients, an utter absence of sexual relationships, disturbed us. People were voluntarily being completely sexually abstinent. This was due to a few reasons; among them were the fear (and experience) of rejection, and the fear of infecting someone else.
For many people, the fear of infecting another person – however negligible – was so intense that celibacy seemed a better option taking an even tiny risk. For us, this simply wasn’t acceptable. While the decision to have sex is always a personal one, abstinence should not be the go-to prevention strategy when we know how HIV transmission can be prevented. I’m sure that the message of ‘no risk’ would have gone a long way in helping people to forge bonds with new partners.
The majority of health promotion materials and discussions in the field at the time were prevention-focused - aiming to prevent new HIV transmissions - and while that was also an important part of our work, we took on another newer challenge: helping people living with HIV have more, not less, sex.
Sometimes public health messages are so conservative that they lose sight of their real-world application. Real life is not just about eliminating risk, it’s also about human connection, love, touch, pleasure, joy. Celibacy might be 100% effective in preventing HIV but it’s not what’s healthy for most individuals. We had to argue that people with HIV have the right to a healthy sex life.
My point in mentioning this is that, contrary to the belief that people with HIV are reckless, my experience has led me to believe that the majority are painfully careful and in fact overly cautious - to the detriment of their own health and happiness.
I might remind the organisations who are reluctant to promote U=U that safer sex was in fact, not developed by health boards, but by people with AIDS themselves.
While reading David France’s ‘How to Survive a Plague’ (a brilliant book – my review to come in the near future), I discovered that the first safer sex manual (and indeed the very concept of safer sex) was written by Richard Berkowitz and Michael Callen, with Joseph Sonnabend (1983) – all people living with AIDS. The manual, called ‘How to Have Sex in an Epidemic: One Approach,’ included tips such as using condoms and lower risk sexual activities and it encouraged people to protect one another.
A few years later, in 1988, Michael Callen wrote, ‘Surviving and Thriving with AIDS’ and explored the question, ‘What Does It Take to Be a "Long-Term Survivor"?’ Consider Callen’s description of People with AIDS in the context of U=U. Callen wrote that, based on his experience, the majority of long-term survivors are:
Realistic--they understand and accept their diagnosis. They take steps to educate themselves about HIV/AIDS and keep abreast of the latest medical advances.
Pro-active--taking charge of their own life and health. They refuse to be helpless or hopeless and do not wait for others to take care of their problems for them. Instead, they learn to handle things themselves. Long-term survivors tend to be assertive--they can say "no" when the situation calls for it. They make decisions based on what they believe is best for them, rather than what others want or think is best.
Analytical--able to weigh the pros and cons of an issue and make informed choices after evaluating all the facts at their disposal.
Flexible--willing to make adjustments in personal habits, fitness level, or lifestyle to better combat the disease.
Coming from the same spirit in which the Denver Principles were written, and from which AIDS activism was founded, the above reminds us that people living with HIV deserve to be treated with respect. Indeed, the fraught history between people with HIV and the medical/scientific community should serve as an important reminder that people living with the disease deserve to be given all information so that they can make the health and lifestyle decisions that are right for them.
Withholding information on the assumption that it will be misused is not only misguided, it is unethical.
Let us not repeat history but learn from it. We have come so far thanks to the incredible advocacy work done by people living with HIV and AIDS. There is no reason why we cannot create health promotion information that is accurate and respectful to the role that people living with HIV have and do play in ending the epidemic.