Fighting HIV Stigma: Empowering Global Leaders for Change

During the recent International AIDS Conference, which took place July 22-26 in Munich, Germany, global HIV and AIDS policy efforts and issues were hot topics. Merck, known as MSD outside the US and Canada, hosted a symposium dedicated to ending this public health threat by working to also end the stigma and discrimination that continue to permeate the space and have a disproportionately negative impact on persons living with HIV.

In the session, “Coming Through That Fire: Transcending HIV-Related Shame and Stigma,” presenters from the Netherlands, the US, Kenya, Uganda, Lebanon, and Nigeria gathered to discuss the impact of both shame and stigma on persons living with HIV who are transgender and sexual minorities, as well as celebrate the community leaders fighting to make a difference.

Paul Schaper, MA, MPH, MBA, associate vice president, Global Pharmaceutical Public Policy, Merck, discusses why the pharma giant continues to fight for progress against this global public health threat, empowering the next generation to continue to advocate for their communities, and why he believes shame and stigma persist and continue to influence policy decision.

The interview has been edited for clarity and length.

Paul Schaper, MA, MPH, MBA | Image Credit: Merck

The American Journal of Managed Care® (AJMC®): Merck has been advancing HIV science for 35 years. Can you highlight some of the company’s notable achievements in this area and explain why it remains a critical focus?

Schaper: Merck scientists were among the first to discover and develop medicines for the treatment of HIV, including being the first to publish the crystal structure of HIV protease and developing Crixivan (indinavir), one of the first protease inhibitors. The introduction of protease inhibitors as part of a 3-drug regimen changed the course of the HIV epidemic. We’re proud of our pioneering advancements in this field, but much more work remains until the global community can achieve the goal of ending the HIV epidemic for everyone.

There are currently 39 million people with HIV globally. New prevention tools, treatments, and, ultimately, a cure will be needed to achieve the goal of ending AIDS. Having been part of this effort for over 35 years, Merck is committed to continuing our work to contribute to reaching the goal of ending the epidemic.

AJMC: In 2022, Merck cocreated the Youth Hub. Can you share more about this organization, its changemakers, and their advocacy work?

Schaper: The IAS Youth Hub is a networking platform that empowers young people living with and affected by HIV to lead HIV advocacy work in their communities. The members of the IAS Youth Hub are an inspiring group of changemakers with different backgrounds and experiences, each striving to empower and educate others from around the world. The Hub showcases the leadership of young people, provides opportunities for capacity building, mentorship, and networking, and links young leaders to organizations and resources tailored to their needs. It also provides seed grants to support young people in implementing programs to make a difference in their communities. We’re proud to support these young leaders, advocates, and activists, and we’re excited to continue to watch the impact they make.

AJMC: Can you tell us more about the discussion, “Coming Through That Fire: Transcending HIV-Related Shame and Stigma”?

Schaper: This symposium featured an international, multidisciplinary expert group:

• Erika Castellanos, executive director, Global Action for Trans Equality, the Netherlands
• Laura Ferguson, PhD, director of research, USC Institute on Inequalities in Global Health, US
• Florence Riako Anam, co-executive director, The Global Network of People Living With HIV, Kenya
• Frank Mugisha, executive director, Sexual Minorities Uganda, Uganda
• Nesrine Rizk, MD, assistant professor, Department of Internal Medicine, American University of Beirut, Lebanon
• Isaac Ogunkola, researcher, Youth Rise International, Nigeria

The discussion explored the ongoing impact of HIV-related stigma and discrimination, including why these issues remain such significant barriers toward progress in ending the HIV epidemic and the role that different stakeholders can play to help combat stigma. One of the most inspiring parts of the session was hearing about how community leaders have executed programs and interventions to address HIV-related stigma and discrimination. In addition to building consensus around the work that still needs to be done, this was an important moment to celebrate the accomplishments of HIV advocates worldwide who are creating positive change in their communities.

AJMC: How does HIV stigma influence policy decisions, and what impact does it have?

Schaper: Stigma and discrimination against people living with and affected by HIV can be a significant barrier to accessing care around the world. HIV-related stigma manifests itself at many levels and through various experiences, practices, and laws, including internalized stigma, criminalization, and health care stigma. All of these contribute to reduced access to HIV care, lower adherence to medication, and mental health issues among people affected by stigma and discrimination.

UNAIDS has identified addressing stigma and discrimination as a key enabler to reduce new HIV infections and achieve global HIV goals. It is important for policymakers to understand the impact of stigma and discrimination and to commit to advance policies that facilitate improved access to HIV treatment and prevention. Beyond significantly impacting well-being and threatening the rights of people living with and affected by HIV, HIV-related discrimination can limit access to treatment and prevention services, critical tools that we need to make progress toward ending the epidemic for everyone. This is one reason why eliminating stigma remains such an important priority in the global response to HIV.

AJMC: Why do stigma and shame still accompany an HIV diagnosis, even with the possibility of undetectable viral loads?

Schaper: HIV-related stigma persists despite advancements in HIV care. It has evolved alongside the HIV epidemic, which is why our efforts to address stigma need to continue and evolve as well. Engagement and education are key tools in this arena. Community-level efforts to disseminate accurate information on HIV, including through peer-led education and support, can help dismantle outdated belief systems and empower people to access treatment and prevention services.

HIV-related stigma also is multifactorial. People with HIV, groups associated with people with HIV, and other key populations at higher risk of acquiring HIV—such as people who inject drugs, sex workers, men who have sex with men, and transgender individuals—can face multiple overlapping and converging forms of stigma. Work to combat HIV-related stigma must be sensitive to the societal pressures, social circumstances, structural inequalities, and discrimination faced by key populations that HIV disproportionately impacts.

The success of the global response to HIV has been closely linked to broader efforts to challenge systemic barriers for marginalized populations and address inequality. Continued efforts to address these systemic barriers and inequalities will be key to increasing access to treatment and prevention.

AJMC: Are there other initiatives by Merck in the HIV/AIDS space? Could you tell us more about some of these efforts?

Schaper: Today, our company is developing multiple options designed to help people manage HIV and protect people from HIV. For an overview of Merck’s HIV treatment and prevention clinical development program, please click here. We remain committed to several collaborations and partnerships with others in the global HIV community to address the complex challenges that impede progress toward ending the epidemic.