Social Action: A Return to Our Roots in Responding to HIV and Hepatitis C

HIV has changed drastically over the past thirty years. While many people focus on scientific innovations that have been life saving for millions, the social aspects of this disease also have changed in a dramatic way.

HIV is now commonly viewed as yet another manageable chronic disease. Yet, when the disease first appeared in the 1980s, it was quite unique and distinct from any previous epidemic. In particular, the stigma related to the disease largely being found among gay men and injection drug users (IDU) impacted every facet of the public, private and governmental response. This stigma was even found in one of the original names of "Gay-Related Immune Disorder (GRID)" in the earliest days.

Given that the stigma delayed and hindered every part of the early response to HIV, it was necessary for creative approaches to both prevention and support services. These efforts largely utilized social action strategies. While things have changed enormously in the last thirty years, ongoing health disparities and stigma call for a return to this strategy.

Communities came together to respond to HIV when public health and other systems wouldn't.

While waiting for governmental and public health organizations to respond:

  • Gay men and lots of lesbians created a new set of community-based organizations that specially responded to HIV/AIDS.
  • Many of these organizations had little money but lots of volunteers. So they offered what was feasible, including emotional and practical support via "buddy programs."

While waiting for medical researchers and "big pharma" pharmaceutical companies to respond:

  • A new kind of direct-action mobilization was created by AIDS Coalition to Unleash Power (ACT UP) and similar organizations and chapters across the nation.
  • "Die-ins" were one of the few ways to get media attention and force action related to spurring research, getting experimental drugs released more quickly, and putting downward pressure on the price of these life-saving options.

While waiting for the "general community" to respond with compassion and assistance, creative programs filled the void to increase awareness and reduce stigma and mis-information:

  • The Names Project AIDS memorial quilt was a visible educational tool.
  • Speaker's Bureaus were formed to allow persons with HIV to tell their honest, first-hand stories.
  • Home-grown and community-based programs taught safer sex workshops and distributed condoms in a variety of venues.

So what did this social action and creativity teach us? We learned that individuals and communities could be powerful, even without a lot of money or resources, through social action that made them visible. We learned that people had to share their personal stories and be in public to reduce stigma and increase resources. And we learned that persons living with HIV could be empowered through a movement that had them as the central voices.

I believe that we still have lots of stigma related to HIV and hepatitis C (HCV) that continues to hold back our effective public health and health care response. Gay and bisexual men, transgender individuals, and persons who use drugs still are treated differently in communities and within our health care system. This is proven by the continuing disparities in the rates of infectious diseases, particularly HIV, HCV and syphilis.

I suggest that the answer to these ongoing challenges is to return to our roots -- and bring back social action for HIV and HCV. We can use the lessons learned back in the 1980s and 1990s, acting as outspoken advocates for excellent public health. And we need to do this in areas where the most striking health disparities continue.

  1. Disproportionate rates of new HIV infection among young gay and bisexual men of color
    Young gay and bisexual men of color continue to have the highest rates of new HIV infection. That's largely because HIV education programs aren't enough. This population still faces stigma and bullying in schools. And even when school environments are relatively safe, school-based sex education is rarely comprehensive and inclusive of their identity and sexual experiences. We know that public health works, so we just have to target our resources and strategies to end this disparity.

  2. Transgender stigma and invisibility
    Few transgender individuals have access to safe, culturally competent and holistic health care options in their local communities. Many have faced stigma and discrimination when seeking health care, making them reluctant to get medical services, let alone effective prevention and support. Development of safe health resources is probably a pre-requisite to effectively reducing new HIV infection with this population.

  3. Intersection of race, poverty and stigma
    African Americans have the highest rates of HIV in almost every state and town. However, this health crisis is worsened by issues related to access and discrimination. Many of the states with the highest rate of HIV infection among African Americans are also the places without expanded Medicaid under the Affordable Care Act (ACA). This is just one of many factors that make it harder to reduce HIV-related disparities and is wrapped up in poverty. Public health needs to be part of larger social action movements including #BlackLivesMatter.

  4. Public health response to hepatitis C
    While research has brought incredible new treatments for HCV onto the market, in many ways the public health response parallels where we were with HIV in the 1980s and 1990s. New treatments are exorbitantly expensive and still hard to access, even for those with either Medicaid or private insurance. Our nation has never had enough government funds for an integrated and effective public health response, so many states can't even perform basic HCV surveillance. And public awareness is still lacking, despite millions of Americans living with HCV. In each of these areas, a look at HCV today feels like looking backwards thirty years to the early response to HIV. And so our social action strategies clearly could have a positive impact.

  5. Drug user health
    The health of persons who use drugs is rarely a topic of conversation or a priority for health care systems. However, small changes can have an enormous positive impact on public health. The ban on the use of federal funds for syringe exchange was proven ineffective and counter-productive almost twenty years ago; it's overdue for this bad public policy to be rescinded. Similarly, small efforts by public health organizations can have an enormous positive impact on the growing disaster of opiate overdoses across the county.

Research and government action, at both the state and federal level, have given us enormous success in working to bring an end to both the HIV and hepatitis epidemics. With the successful maintenance of programs like Ryan White and with the ongoing implementation of the ACA, we are headed in the right direction to end new infections for both and effectively treat those facing either or both disease. But it's still not enough. We need to adopt what worked for us in the early stages of the HIV epidemic by returning the power to the people and engaging communities in creative ways to better address the issues that remain. I'm looking forward to working with NASTAD members and staff to explore how we can do just that.

We want to hear from you! How can your jurisdiction partner with and engage your community to return to the movement's social action roots? What successes and challenges have you had in the past and what do you anticipate for the future? Continue the conversation and share your thoughts in the comments section below. Also, head over to our Facebook and Twitter pages to continue the discussion there.