30+ years into the HIV/AIDS Pandemic

On Tuesday night, I attended an off-site symposium at George Washington University sponsored by the Whitman Walker Clinic; its featured speaker was Jeannie White Ginder, mother of Ryan White a teenager with hemophilia and HIV/AIDS who died in 1990.



It was a sobering look back for me and others in the audience. Many may or may not have remembered the media coverage concerning this young person; some in the audience may not have known who The Ryan White CARE Act was named after; some may have forgotten he was befriended by both Elton John and Michael Jackson, who were in attendance at his funeral alongside Jeannie.

In 1990, though I was in the thick of the second wave of the epidemic in San Francisco, to mean close personal friends grew ill and a number died (to whom I bore witness), so much of what was happening beyond the walls of my life seemed a distant memory i.e. the courageous life Ryan lived, the influence his caring and love had on people including the celebrities mentioned.

Jeannie reminded us of her son's struggles, their family’s triumphs, how he touched the lives of John, Michael and others who befriended him, became his champion and saw him through to his death. She reminded the audience loosing someone, how it does not get better, you simply learn to live with the losses, the disappointments, and the let down one experience during those dark times of the epidemic.

I remembered screaming at a friend’s sister (with anger and bitterness), who was never present during the last months of her brother's life (preparing meals, giving baths, changing clothes, cleaning his house), who saw it was her right/duty to tell his caregivers on his last days how she and her family were to proceed with his funeral and his care as his death became imminent.

I recalled a dear friend who clung to his notions of the idealized partner and family, and moving himself back to Southern California anticipating they would be there during his transition. As was often the case, his closes circle of friends were the ones who took turns in going to LA to assume most of his care.

Many of us in those early days, juggled work, took care of friends, participated in street activism, advocacy work with elected officials and health administrators, to channel energy and cope with the very painful lessons life was given us early in our adulthood.

There was Jeannie consoling us, reminding us there were mothers who cared, communities who later rallied to care for others. A mother who lost her son nearly 22 years ago dared to inspire us to have hope in humankind, and renew our commitment to keep on with the struggle. Different and changed the landscape may have become.

This XIX International Conference on HIV/AIDS has not been solely about the advances we've made in science, medicine, and listening in on both local and global challenges faced in addressing the epidemic. It has been also time for reflection, reconnecting with colleagues and friends who are alive, and tempering the enthusiasm that permeates the convention hall. No there is no cure in the immediate or near future; we have better armament for extending life almost to a natural age for those living with HIV/AIDS; we are maybe at the beginning of seeing a vaccine in the horizon; and there are added options (treatment as prevention, better testing technology) in the realm of prevention. 30 years from its beginning, there are measurable changes that have and are taking place.

Quandry of place and time

At Monday's Opening Plenary, luminaries Dr. Fauci, long term Person living with HIV/AIDS Phil Wilson (32 years with the virus), Secretary Clinton addressed the delegates. I am certain there was wide spread sound bite coverage in the media of their assertions, findings, recommendations and the US commitment to the global pandemic.

A day after, slept and woke up wrestling with a question. How can the largest industrialized nation in the world, have a Capitol city with 3% HIV/AIDS prevalence? It is recognized as the highest in the nation and matching or exceeding nations of the developing world specially Africa.

The easy pieces of the answer can be the ongoing racist or discriminatory policies, residual manifestations of trauma (slavery), and the unequal distribution of wealth and resources. There are certainly sufficient neighborhood and academic discussions and numerous publications that can be cited to support these constructs.

Knowing or intuiting these are part of the whole picture, where does the individual (choice), family (modeling and guidance), community (church, school) rest in this complex scheme of a particular reality, ours as a nation and within the context of a global community.

Are we assuaging our collective response to our sense of powerlessness and internalized anger by committing resources (monetary, technical, benevolence) to mother Africa? Whether my question has basis or not, it is curious that certain sectors of the AIDS community are extolling the gains in Africa, 8 million on ARV therapies, and yet all we say about our own epidemic "the AIDS pandemic is complex" when it comes to understanding and breaching a response to our nation's fight with what has become a global rights issues (human rights, social justice).

Numerous listening sessions, countless public comment opportunities on many proposed rulemaking, a national AIDS strategy and yet the political will, the grass root response, and the slow thawing of moral ideology all have contributed to our current homeostatic stasis.

The HIV virus was identified in SF in 1983, the first therapy was introduced in 1987, combination therapy in 1996. Yet with all the biomedical advances, education/prevention, testing, outreach has modest impact in addressing stigma, continued marginalization (Commercial Sex Workers, Intravenous Drug Users and Men who have Sex with Men, and "level" annual rates of HIV infection of 50,000 in the US.

Perhaps a deep silent reflection is warranted, not reactive policies, unconscious personal action, or denial and indifference. The epidemic has been with us for 30+ years. There is much to be hopeful for, in response to the crisis, in light of the changes we have witnessed. Nonetheless, we have done little with the crisis of conscience.

Thoughts before the International AIDS Conference 2012

There are exciting developments in the Prevention field: namely RV144 Thai HIV vaccine trial results (Thailand) moving to a clinical trial in Southern Africa; a home testing kit available in the US; and recently FDA approved Truvada to be used as a prophylactic (other advancement in using what was historically treatment medicine as prevention medication).

As you know, I have spent a better part of my career in HIV/AIDS related work in some form or another since the late 90's; these advances provide 3 new tools in the fight against the spread of HIV and AIDS. The idea that any of the three can decrease the number of infection, or early loss of life is a welcome change.

BTW, I will be blogging from the Conference, look out for it as it will linked to my Facebook wall.