What does World AIDS Day mean to you?

A day to remember the milestones we have achieved over the years as a country and a continent. In the early 1990s we did not have HIV treatment in the continent, nor did we understand several aspects surrounding HIV, including its mode of spread. As a result, dead bodies were wrapped in black polythene bags and disposed of immediately. In 2003, affordable Anti- Retrovirals (ARV) became available to Africa, thanks to Global Fund and PEPFAR. This resulted in less AIDS patients. However, the ARVs came as single tablets and people living with HIV (PLWH) suffered from pill burden as well as serious side effects from some of the ARV. Since then, a lot of research and financial support for HIV has seen policies being arrived at and implemented. This has helped many countries, including my country Kenya, to achieve big strides in fighting HIV. We no longer see PLWH suffering from AIDS. We no longer wrap dead bodies in polythene bags. PLWH access fixed dose ARVs, hence no more pill burdens. Therefore, World AIDS Day is a special time to celebrate our achievements, pay tribute to the people who lost their lives to HIV/AIDS and also a day to continue fighting stigma, an aspect that has been around since the beginning of HIV. It’s a nostalgic day.

What does leading within communities mean to you?

Allowing the community to take charge in bringing positive change to HIV research and programming. This includes spearheading conceptualization and implementation of research, which leads to informing policy development and implementation. This ensures the socio-cultural and socio-economic aspects of particular communities are taken care of hence, increasing acceptability and uptake of prescribed services.

How would you encourage others to let communities lead?

Through discussion and sharing success stories of community-led activities.

What does World AIDS Day mean to you?

For many years, I stood with my husband, and the staff of the AAOGC on the steps of City Hall in Newark, NJ for the ‘One Hour of Silence to End the Silence’ vigil every World AIDS Day, through rain and snow. I would reflect upon our past, remember those we have lost and remind myself what an awful period we went through in the 80s and 90s. Those times should never be forgotten.

World AIDS Day also serves as a reminder to keep HIV/AIDS on the radar, as other crises emerge. Great advances have been made in the field, but there is still a lot of work to be done as we strive to End the Epidemic. This year we have a call to action to “Let Communities Lead.”

What does leading within communities mean to you?

Having worked in the HIV/AIDS field for many years, and also being present in the formidable 80s and 90s when the epidemic was at its most devastating period in time, it is well known how communities have been involved in helping to steer the fight. From the ACT-UP movement, to the brave lesbians who cared for those in the LGBTQ community who were alone and dying at home, to seeing the growth of community-based care and agencies here in the US and globally. Our respected community leaders are the eyes and ears of their communities. Without this global community involvement, I wonder where we would currently be in the status of the epidemic.

How would you encourage others to let communities lead?

Take the time to observe, listen and identify if the community’s goals, actions and outcomes are something that you can collaborate on. If you have a particular area of expertise, then offer your services if you see a need. Working with communities can be very rewarding. Follow their lead and be an ally to them. It is important to include and provide funding and support for community leaders as visible partners in the fight.