World AIDS Day: We Have Some Work to Do
by Kevin Varner, MA, NCC, LPCA
It’s World AIDS Day. In the past, this day has been marked by sadness and remembrance; a time to pause and speak the names of those we love who have become infected, and those we’ve lost to this worldwide epidemic. In the South, it hits home more than elsewhere in the country. In North Carolina, this day brings an awareness of how our rural areas and particularly our HIV positive Black brothers and sisters are underserved, and our HIV/AIDS service organizations are understaffed and underfunded.
In the 33 years since the official discovery of HIV, we have made major scientific and medical advances in how we treat HIV, and yet, with a few exceptions, we have done a poor job of how we treat those living with it. Stigma toward those living with HIV continues to drive up rates of infection, discouraging many from accessing, and staying in care. Fear and misinformation shroud HIV, especially in the South, keeping the perception of what it means to be HIV positive locked in the decade of the 1980s, driving up infection rates, and keeping high-risk negative people from being tested and properly educated. Shame and loss of dignity about having HIV keeps positive people from living their best lives and thriving in spite of their diagnosis. We have missed an opportunity when it comes to suppressing HIV shame, stigma, fear, and loss of will with the same urgency we have put toward suppressing the virus and finding a cure.
If we’ve done such an amazing job with HIV treatment, and with a pill that prevents HIV infection, why haven’t we harnessed this same energy, using similar statistically measured, evidence based approaches to helping the HIV positive mind, spirit, and the HIV community to thrive in spite of HIV diagnosis, in all areas of their lives?
It’s possible. I have seen firsthand how lives are transformed from fear and hopelessness to courageous, hopeful, and fierce lives unaffected by the presence of this insidious killer. I am one. I am blessed to know many others. Some are advocates with loud voices and writing skills, like me, while others are quietly going about their lives without apology, fear or stigma, and thriving daily. They have not only suppressed the HIV virus, they have suppressed its toxic, infectious hold on their thoughts, emotions, spirits, and daily lives.
Still, others struggle with stigma, shame, and fear, keeping them stuck in a rut of viremia, opportunistic infections, missed doses and medical appointments, and failure to reconcile HIV as anything but a microscopic part of their lives. Their thoughts, emotions, decisions, and spirits are HIV infected. Every decision they make is from the viewpoint of “I am sick, I am HIV, and eventually I will succumb to this illness.” The imbalance is as great, and on World AIDS Day, I think we should find a balance that allows us to care for the whole person living with HIV/AIDS.
Balanced HIV care means HIV providers must diagnose a client’s resilience, willingness, level of motivation, support network, and healthy coping skills during the first visit where labs are taken. Not only does this give a more comprehensive picture of where clients are at this crucial moment, it may lead to fewer missed appointments, fewer missed doses, and fewer HIV positive individuals lost to care. By assessing our client’s’ mental, emotional and spiritual immune system, we can determine their ability to heal and fight HIV in the same way we measure their body’s immune levels.
This is strengthened by not cutting funds or eliminating positions in HIV prevention and education. It is done by all of us advocating at the local, county, and state level that everyone who is sexually active be educated by a medical provider and offered an HIV rapid test.
It is done by having HIV/AIDS nonprofits staffed with those who are also living with HIV, executive directors who are steeped in the latest information about HIV care, HIV therapy options, and not just good at fund-raising and keeping the lights on. It’s about commitment to knowing the community we serve, and building those relationships rather than burning bridges when we should be sowing the seeds of love, compassion, and inclusion.
This is realized by having peer support volunteers available at intake. Having an HIV positive peer present at the first clinic visit who has successfully navigated the medical system, has suppressed their virus, recovered their strength, dignity, and health to the point where they are capable of paying it forward, can be a warm, non-clinical contact that may help the newly diagnosed client think, “If they can suppress this nasty virus and heal, then so can I”.
Balanced HIV care means having a committed community of referrals and advocates as committed to lowering community viral load and combating stigma and mis-education as the HIV clinic staff should be. We become invested in stopping the epidemic on a community-wide level. We will provide those newly diagnosed, or those returning to care with quality service that goes beyond traditional medicine, allowing a client to regain control. These are crucial spokes in the wheel of transformation from being “HIV positive” to becoming “HIV undetectable” in body, mind, spirit, and community.
Kevin Varner is the former Director of Prevention and Education Services at Triad Health Project in Greensboro. He now works at Triangle Pastoral Counseling in Raleigh, and continues to advocate with North Carolina AIDS Action Network (NCAAN) at both the state and national level for HIV funding, prevention, education, testing, and helping those living with HIV to thrive in spite of their virus. Kevin has been HIV undetectable since 2007.