"It is a terrible irony that we have come to a place where the medications we fought for will allow us to live a relatively normal quality of life, and now we are going to go to jail for doing so". Louise Binder reports on laws that will deter people from testing for HIV and increase the fear of stigma
For those of us who lived through the era before Anti-RetroViral medication (ARVs) in North America, the advent of HIV medications meant the possibility of living a relatively healthy, normal life. We held our collective breaths. Would the medication work ? And they did for many of us. Slowly we began to emerge from the cocoon of fear we had lived in for so long and began to return to the lives we had lived before. Some of us had made new “HIV “ lives and they were fine too.
We understood the ways this virus is transmitted and we had learned the catechism of safer sex and clean needles. We had no desire to see this epidemic continue and transmit it to others, who would also have to live on life long toxic chemotherapy or die. Death from AIDS-related illness is still far too common, where medication is too expensive or not paid for by governments.
Unfortunately, the number of people with HIV globally continued to rise. The virus found new groups of people to inhabit, expanding from the original groups of gay men and blood produce recipients to women, illicit drug users, the straight population, indigenous people, sex workers, transgendered people , young people, babies through vertical transmission. As time has passed, we have seen that it is most prevalent in populations of poverty and lack of political and economic power. Huge numbers of people with HIV in the southern hemisphere and relatively equivalent numbers in the north are in these populations.
Slowly medication is getting to those places and communities too and there is a hope for an “AIDS-free “ generation. Of course, this is predicated on the hypothesis that people will have access to testing and will choose to test. Yet history has shown us that stigma and discrimination frightens people off from testing. Before we had treatments, people saw no point in testing, because they were going to die in any case so why would they want to know that? Psychology plays a huge role in the decision to test. So do deterrents to testing.
Even today, many people fear testing because of the stigma and discrimination they know they will face from many sources: including intimate partners, their communities, workplaces. We are constantly trying to break down these walls of stigma – which is another form of violence - that hold up this epidemic and let it thrive.
Now a new threat is emerging that has the potential to wipe away all of the work we have done to encourage testing and to remove the fear of stigma. It is a far more pernicious beast than discrimination. It is fear of going to jail because we are living with HIV. Cases of criminalization are emerging, particularly in Canada and the USA. Charges are being laid against people living with HIV who are alleged to have put their sexual partners at risk for HIV during sexual intercourse. The allegations, over 1000 already in the U.S., allege that the person having HIV did not tell the partner of his or her status, even though in many cases they were wearing condoms and /or had an undetectable viral load. And these are cases of consensual sex. Of course we do not want to see predators on the streets. But the stories I have heard are of people living with HIV who have been doing what they understood they should to protect their partners and/or were telling partners of their status before having sex. Yet, when things go sour in the relationship, or for whatever reason, the partner charges them with assault, attempted murder and in many U.S. States can actually rely on specific HIV criminal laws. People are sent to jail for years when there was no harm done and no criminal intent whatsoever. Could there be a more egregious set of laws and policies to stop people from wanting to be tested? Rather than being a deterrent to having unsafe sex, these laws and policies will be a deterrent to testing. That could certainly lead to another epidemic - maybe one worse than the first. This is because if someone with HIV who has not tested has unprotected sex with someone with HIV who is on medication, the former may well acquire a different strain of virus and become resistant to the medication of their sexual partner. And what about the costs to public health and the health budgets that we are desperately trying to curb?
This is one of the most wrongheaded and counterproductive approaches to prevention yet. All of those who have a stake in stopping this shortsighted criminal law approach must band together. First, we must develop a cost/benefit analysis of the terrible price to health care if even a proportion of people decide not to test. Then we must create an alliance of public health, human rights groups, groups of people with HIV, women’s rights groups, researchers, the health care community and other stakeholders who stand to lose if this heinous trend continues. We need to unite to adopt an evidence-based approach to convince politicians, law enforcement agencies, the judiciary and others supporting this draconian and counterproductive approach to prevention.
What a terrible irony that we have come to a place where the medications we fought for will allow us to live a relatively “normal “ quality of life and now we are going to go to jail for doing so. Thankfully, after years of demands, CDC have just quietly released a chart on their website, indicating risk levels of HIV transmission according to different exposure routes. We dearly hope that this will begin to shift the attitudes and practices of police, judges, prosecutors, politicians and the media – but we still have a long long way to go.