AIDSWatch Celebrates 25 years of Advocacy, Activism, and Change

These 25 years have been hard, and our successes hard fought. Many a shoe has walked the halls of Congress bringing a message about necessary appropriations and laws, about reauthorization and about reframing our national narrative about HIV.

From stilettos to sling backs, from Doc Martins to wingtips, wearing sneakers or sandals, suits and skirts, t-shirts and jeans, literally thousands of us, from all walks of life and all corners of the country have walked those halls over these 25 years. Cisgendered, transgendered, gay and straight, every color of the human rainbow, and every strand of the nation’s rich tapestry ---we have come from red, blue and purple states across our union united in telling our stories and advocating for what we need. 

Our stories of stigma and discrimination are common, whether from Mississippi to Maine.  Our tales of how case managers, peer educators, medications and housing have saved our lives are common whether we hail from Alaska or Alabama.  Red state or blue state, our story is a bipartisan one, and it has been from the beginning. 

We have worn our shoes and our hearts on our sleeves to tell our stories and demand our human rights: our innate right for access to services, treatment, prevention, housing and research; and we’ve demanded our naturally derived rights for fairness and protection from discrimination.

25 years….and yet we are not done!

When we started, groups like the National Association of People with AIDS, Project Inform, amfAR, NMAC and AIDS Action had created AIDSWatch to bring people living with HIV to Washington to do just that – to tell our stories and advocate for what we need. In those early years Wristwatch focused so much on AIDS research funding at NIH that it succeeded in securing the largest increase in our history. Similar tales could be told about the Ryan White program and its annual appropriations, on building up The Housing Opportunities for Persons With AIDS (HOPWA), and on expanding the response of the CDC and NIH.  We have reauthorization and increased funding to show as our success.

Those successes began under President Clinton. We broke the silence. And because of our advocacy, the White House Office of National AIDS Policy was created, and so was the President’s Advisory Council on HIV/AIDS. Oh, how much those entitles did, and oh how much our advocacy made possible. Our advocacy is needed today to make them work for us again.  

During those first AIDSWatch years we had bi-partisan friends in Congress who we helped champion our cause. Leaders who, with our urging and with our support, worked across the aisle on our behalf.

The Clinton years saw antiretroviral therapy drugs (ARV) become the norm for treatment, and death rates decline as a result, but our advocacy did not. Our advocacy for The AIDS Drug Assistance Program (ADAP) was heard, and each time during these 25 years when waiting lists grew, our advocacy got louder.

Then, a Republican took the White House. President Bush heard your voices pushing for a global response, and The United States President's Emergency Plan for AIDS Relief  (PEPFAR) was created.  And while the world’s attention turned to the Black and brown folks in other countries, our advocacy for our own Black and brown folks grew stronger. 

In 1999 we pushed for a focus on the increasing impact of the epidemic on Black and brown people here and our advocates helped created the Minority AIDS Initiative (MAI). Dr. Beny Prim, AIDS United Board member, Debra Frazier-Howze and Congressman Donna Christiansen: they knew that bipartisan approaches were needed. And maintaining the support for MAI has been a key message at AIDSWatch year after year. A message that has carried by all of us, no matter what color we are.

During the Bush years, we fought abstinence-only agendas and threats of retaliatory audits for doing our work for gay men.  But also, during those years the CDC taught us about importance of routine screenings and about Prevention with Positives. Today those messages, through your advocacy, are helping us translate science into our lives. The science about syringe services and PrEP became irrefutable during these past 25 years, and now you are spreading the scientific message that is transforming our lives inside/out---that an undetectable viral means your virus is untransmittable. 

Our last decade saw a president who listened closely to our advocacy. You elected him, and you held him to his promises. We said if we can demand every country getting our funds for HIV be required to have a national plan, then so should we. And he did!  President Obama lifted the travel ban, supported federal resources for syringe programs, he crafted the Affordable Care Act, and he committed to a vision and national plan that this administration will not deny is still needed today.

And today, our advocacy is needed now more than ever. You know the facts. In this our 25th year, and the second of this administration, and a Congress led by Paul Ryan and Mitch McConnell, we have so much to do.

But, let’s be sure we first celebrate your accomplishments, and the thousands of advocates who walked the halls of power here in Washington on behalf of our cause over these past 25 years — some of whom have died, some of whom are retired, and some who are still here.  Perhaps most excitingly, some are brand new; those who were born after AIDSWatch began. They are here today as a testament to our historic movement. Yes, over the past 25 years, thousands have taken off from work, with most opening their own wallets and pocketbooks to get on planes and trains and buses, so that they could advocate for what we need.

And now with this man and this Congress you have come to tell your stories and advocate for what we need.  In this our 25th year, you are here, and AIDSWatch is alive. It’s as relevant and necessary as it was 25 years ago. So, let’s get to work. We have 25 years of power and success behind us. We’ve done it before. And we will do it again. And if we must, we will do it for 25 more!  

A slightly edited version of this op-ed was presented by AIDS United CEO Jesse Milan, Jr. as opening remarks for the 25th anniversary AIDSWatch on March 26th at the Washington Marriott Wardman Park. AIDSWatch is an advocacy event that enlists people living with HIV from around the country to educate Congress on the state of HIV/AIDS research, prevention, treatment. Participants are trained on effective advocacy and then meet Members of Congress and their staff to share their individual experiences living with HIV, the impact of current policies on their communities, and generally lend a face to the issue. Learn more at aidsunited.org/aidswatch.