What the Global AIDS Crisis Can Teach Us About Our Approach to Mental Illness

Today marks the 33rd annual World AIDS Day, a day when the world comes together to raise awareness and honor the tens of millions of people who have lost their lives to HIV/AIDS over the last four decades, and to light the way forward to continue the fight against the last major global pandemic to sustain our collective attention. This day also provides an opportunity to reflect on what we've learned from this devastating pandemic and apply the lessons learned to a very different issue that needs a similar global movement: mental health. As an epidemiologist and physician who started my career working on global HIV/AIDS, and now runs a national mental health nonprofit called Fountain House, I am acutely aware of the ways we can harness these learnings to best support our growing mental health crisis.

"Changing our mental health care system requires a movement akin to that of the HIV/AIDS activists, and that means putting people with lived experience at the center of policy and social advocacy."

The response to the global HIV/AIDS crisis stands out from other health responses because of its major grassroots mobilization of people with lived experience who demanded change--not only in health and human rights, but in science. Groups like ACT UP, TAC, and countless others put their bodies on the line to break down stigma and demand change from their political and social leaders, stopping at nothing to get the rights and treatment they deserved. Activists from the global North and South, who might otherwise have little in common on the surface, joined in global solidarity, creating a bulwark of political pressure and momentum that pushed governments and the private sector into action. In some cases, activists became the scientific experts, able to navigate both worlds with ease and becoming well-versed in the testing, treatment and research needed to help themselves and their community stay alive.

Changing our mental health care system requires a movement akin to that led by HIV/AIDS activists, and that means putting people with lived experience at the center of policy and social advocacy. While the goals may be different--namely the focus on making our exceedingly complex mental health system more accessible and of higher quality for the most vulnerable, while defining a common standard of evidence-based care--the means to an end is the same: centering people who deeply understand the care they need and deserve, and are committed to tackling stigma and discrimination that underlies why they do not have access in the first place. While mental health advocacy organizations have existed for decades, and many are growing in stature, none have yet been able to catalyze a global, grassroots movement of people with lived experience of mental illness as agents of their own change, much as we've seen be successful for HIV.

In part a result of this sustained political pressure, the global HIV/AIDS pandemic response was also notable for setting ambitious national and global targets to drive concerted action. I was lucky enough, for example, to work at the World Health Organization's HIV Department when we launched the "3 by 5" initiative, which aimed to get 3 million people (approximately 50% of need, at the time) on antiretroviral treatment by the end of 2005. While we missed the target, we laid the groundwork for global and national coordination, standard setting, supply chain management, and data sharing, that, in conjunction with scientific advances, are the reason that only 25 years after the advent of AIDS treatment we are having a realistic global conversation about "ending the epidemic." This was unthinkable at the time, but would not have been possible today without a North Star to point to.

While the mental health field has targets in the form of the WHO's Comprehensive Mental Health Action Plan 2013-2030 and the U.S. Department of Health and Human Services's Healthy People 2030, for example, it has yet to galvanize the clear and coordinated support that 3 by 5 or UNAIDS 90x90x90 did. We must adopt a new paradigm for our mental health goals that are ambitious, actionable and focused on saving lives. For instance, deaths of despair due to alcohol, overdose, or suicide, are a lagging indicator of rising and intersecting mental health and addiction crises. Unless we commit, for example, to reducing these deaths of despair through target setting, it will be a challenge to motivate the kind of coordinated action, from prevention to treatment and support, to address the healthcare access and supports for social determinants of health that we need to bend this rising epidemic curve.

To be clear, the story of success in the fight against HIV/AIDS is more complex than movement building and target setting alone. We have had strong public-private partnerships, a robust research enterprise and rapid drug development, global procurement, supply chain and delivery efforts including PEPFAR and The Global Fund, and a robust prevention and education agenda. But as we consider how to apply the lessons from the HIV movement to other public health crises, especially for stigmatized conditions like mental health, without a grassroots movement and clear, unified, ambitious targets, these structures are less likely to emerge, and our current patchwork system of mental health care and support is likely to persist.

The HIV/AIDS pandemic offers us countless lessons in how to effectively tackle a global crisis that feels insurmountable, that is highly stigmatized, that lacks investment, and lacks standards of care. We owe it to all those who fought tirelessly to improve the lives of those living with HIV/AIDS to take these lessons and apply them to other global epidemics. A sustained grassroots movement and global target setting have the power to revolutionize the way we think about combatting our mental health crises--helping a new generation have the access to care and treatment needed to live robust, healthy lives.