Community involvement in HIV and tuberculosis research

Area of Science:

• Public Health
• Infectious Disease Research
• Health Policy Advocacy

Background:

• The human immunodeficiency virus (HIV) pandemic has seen affected communities actively lead crisis response efforts since the 1980s.
• HIV treatment activism has successfully influenced regulatory bodies for expanded access to experimental therapies and accelerated drug approvals.
• Involvement of people with HIV and advocates in clinical trial design, conduct, and evaluation has been a significant achievement.

Purpose of the Study:

• To highlight the critical role of HIV treatment activists in advancing HIV research and treatment access.
• To explore the adaptation of HIV activism strategies to address the urgent needs in tuberculosis (TB) research and programs.
• To emphasize the necessity of activist efforts in accelerating the development of diagnostics, treatments, and vaccines for TB, particularly in people living with HIV.

Main Methods:

• Review of historical achievements of the HIV treatment activist movement.
• Analysis of the adaptation of these advocacy skills to tuberculosis research and programs.
• Case study approach examining the implementation of collaborative HIV/TB activities and their impact on health systems.

Main Results:

• HIV activism has led to expanded access to experimental treatments and accelerated drug approvals based on surrogate markers.
• Activists have been integrated into various stages of the HIV research system, enhancing trial relevance and conduct.
• The skills and experiences of HIV activists are being applied to TB research, addressing the lack of adequate interventions for co-infected individuals.

Conclusions:

• The proactive engagement of people with HIV has been instrumental in shaping the trajectory of HIV research and care.
• Activist-driven advocacy is vital for accelerating the development and implementation of new TB diagnostics, drugs, and vaccines.
• Scaling up collaborative HIV/TB programs, informed by activist experiences, strengthens overall health systems and reduces the TB burden among people with HIV.