“Harm Reduction” has never seemed to me like an appropriate playground for children. In the world of HIV/AIDS, the term harm reduction refers to any evidence-based public health intervention that decreases the consequences (namely, HIV transmission) of risky behavior (namely, drug use and sex). Consequently, ‘harm reduction’ normally conjures up images that would stereotyped as controversial, to some, immoral, and certainly not PG: A clean needle exchange program so injecting drug users do not share already-used and potentially HIV-infected needles; a methadone clinic, so injecting drug users stop the risky practice of injecting drugs and fulfill their craving with this orally consumed drug substitute; condom distribution, so that someone having sex – whether with a client or with a lover – can protect her/himself from transmitting or contracting the virus. Our Rumah Cemara harm reduction team reaches out to stoners and addicts, sex workers and uninformed teenagers.
But to parents and children?
We expanded our outreach to parents last Wednesday at our weekly support group meeting. Colorful powerpoint cued up, with silly staff photos strategically inserted between bullet-points of serious psycho-social research, to lighten the mood, I faced a roomful of our members, mostly parents. They are supported unconditionally by Rumah Cemara in terms of their personal well being, with unrestricted access to free AIDS drugs as well as our harm reduction services, if needed. But while they have personally come to terms with their positive status, most still harbor a heavy burden: sharing their status with their child.
As mentioned in a previous post, I had been asked months ago to develop a curriculum for Rumah Cemara regarding how parents could open their HIV status to their children, or if their child is also positive, how to share their child’s status with the child in safe and healthy way. Thinking I would hit gold searching online child psychology journals, I was shocked to find very little research on this topic. But from all I could gather from this and related situations, the main point is planning. Rather than wait for a ‘right moment’, parents should spend years preparing their child – teaching about personal health and HIV, strengthening the child’s relationship with the doctor as well as peers living with HIV – before their open their status. And as it turns out, this planning concept, adapted with cultural clues gleaned from staff interviews, is in fact just another way to define harm reduction.
The concept struck me only as the powerpoint closed, with a standard slide of thanks, “Hatur Nuhun!” in local Sundanese language. I looked out across the faces still staring straight ahead, unsure how to respond to the various proposed guidelines and the challenge that previously only lingered in the back of their minds, now forced to the forefront.
Finally a few voices piped up, and a few answered back; hands shot up and questions blurted out, “What happens if my child tells her friends?” “I want to tell him, but his grandmother refuses to let me!” “What if she finds out from somebody else by accident?”
The guidelines struck a nerve, one normally untouched, and the feedback of the members told me this otherwise ignored intervention might be a valuable new addition to our outreach services. This type of harm reduction might not lower risk of transmission as obviously as a condom, but it confronts perhaps the riskiest behavior of all: keeping one’s status a secret. Committing to share your status with your child undoubtedly faces – and can overcome – the obstacle at the root of this riskiest behavior: social stigma.
After all, it’s painful to think about how your child’s social life could suffer from this news, but it’s also the best opportunity you have to start the necessary process of ‘normalizing’ HIV and curbing the discrimination that still permeates society. Further, having to act as a team unit within a family with mixed opinions also faces stigma head-on – the kind that still traps most of our members, who although may be ready to open their status to their child, have not yet opened it to their parents or other family members.
The idea behind harm reduction, understandably controversial as it still appears to many legislators and voters alike, is that no matter how much we wish members of our society did not engage in risky behavior, they always will.
It is perhaps the same frustration that many – including myself, feel right now in the wake of the earthquake that hit Haiti last week. Oh, how we wish natural disasters would not strike! But natural disasters, like human nature, lie outside the realm of our control.
The magnitude of human suffering in Haiti – approaching 200,000 deaths and millions struggling to survive – is exponentially more painful because it resulted just as much from an unpredictable natural disaster as from a host of preventable failures – from domestic urban planning to international development assistance. Like the lack of support for condom and clean needle programs that follows in a tragic increase of HIV transmission, the lack of support for smart development assistance – enforcing building codes, stopping rampant deforestation, alleviating urban poverty – has contributed to this present crisis. In fact, according to the US Geological Survey, “the loss of life from earthquakes is typically 10 times higher in developing countries than the West and the damage can be up to 100 times worse.” (Read more here about the human errors that made this natural disaster so much more fatal.)
And so just like AIDS interventions have thankfully moved beyond emergency medical care and treatment into harm reduction strategies, a parallel effort is needed to improve infrastructure in natural-disaster-prone, poorer nations like Haiti. We cannot control the weather but we can build stronger, safer, smarter buildings. We can institute urban planning policies that keep all citizens economically safe and physically out of harms way.
Trying to force people to stop risky behavior has been tried for eons and failed for eons, because it is as impossible as trying to stop the earth’s plates from shifting. Though we should continue to work tirelessly to find ways to prevent both illness and natural disasters, sometimes it’s just (if not more) as worth our while to find ways to mitigate harm from the inevitable challenges ahead.
My heart brakes, twisted in pause-mode, as I think about the pain and suffering this quake has and will continue to cause. Donating money is one important effort, and I implore you to donate now to Partners in Health (www.pih.org).
After taking moment for mourning and for giving, we must move forward and redirect our thoughts, discussions, and actions towards reducing the consequences of the next disaster. Whether engaging children as a HIV harm reduction strategy or implementing a building code system as a lifesaving aid intervention – neither may seem obvious at first, and so far, neither have been taken up enthusiastically enough by people with the resources to make it happen. But these are interventions dictated as necessary from the front-lines, where we should be listening for advice on how to intervene. I am confident at least that our new American administration, specifically State Department efforts under Secretary Clinton, is moving in this direction with a revised foreign aid system. USAID has immense resources, yet does not yet not have all the answers. You might. Do not hesitate to share them, and do not hesitate to eagerly embrace the reality, no matter how dark it may seem, that we cannot prevent the storms ahead. For all the damage we cannot avoid, intelligent and diligent harm reduction strategies will ensure that when they hit, we are ready.