Research into an HIV cure has come alive recently with the infusion of new funding and new relationships such the UNC-Chapel Hill-GSK partnership as that announced on May 11, 2015. This relationship will launch the formation of a new company, Qura, to develop and take a cure to persons living with HIV.
Several heavily reported cases of possible cure and sustainable HIV remission have also sparked public interest in the field. In 2013, the President of the United States pledged 100 million dollars of funding to the field for the next three years, paving the road for new global research.
The cure field presents new challenges to trial conduct, design, risk, and a host of other issues in the scientific, biological, social, ethical and regulatory fields. There has been an expressed need among members of the community to increase literacy around the growing HIV cure research field in order to adequately participate in and make decisions about HIV cure research. Jessica Handibode, Program Coordinator at AVAC, shared that “Empowering lay or non-scientific stakeholders to be independent decision makers is key to ethical research. The HIV cure research field is complex, but moving quickly. There is a lot of interest, and people receive information from the media about the advances in the research without a context or background understanding.” In response, members of the Martin Delaney International Community Advisory Board (CAB), the MDC Collaboratories (CARE, DARE and defeatHIV), and international community educators from advocacy organizations (including AVAC, The Advocacy Group, and Project Inform) formed a steering committee with the goal of creating a well-rounded HIV cure research training curriculum. The “CUREiculum”, as the group calls it, allows communities the chance to form and voice opinions on the cure research agenda.
Karine Dube, co-chair of the CUREiculum project and Program Manager of CARE, explained that “UNC has been an integral partner in developing and implementing the CUREiculum effort. Since the program aims to strengthen community capacity to participate in and make decisions about HIV cure research, we are very excited about the UNC (academic) – AVAC (advocacy) partnership that the CUREiculum represents.”
This HIV Cure Research “CUREiculum” seeks to strengthen capacity around HIV cure research by providing basic information on a variety of topic areas. The curriculum will be comprised of seventeen individual modules that can be taught individually or as part of a larger set. Each module, developed by a scientific and community lead, will have PowerPoint slides, pre- and post-assessment quizzes and participatory activities for training sessions. Modules include lessons on informed consent, stem cell transplants, vaccines, the latent HIV reservoir, HIV cure trials, early ARV treatment, and ethics, and pediatric cure research.
The target audience for the curriculum is anyone interested in learning more about HIV cure research. Ms. Handibode shared that “new tools and resources will be created and added to cater to different levels of science literacy in the future.” The team hopes that the CUREiculum will be a user-friendly tool to “catalyze the stakeholder engagement effort of HIV cure research” and by independent users to “break down complicated science using interactive methodology.” She shared that “there is a lot of misconception and hyperbole that float around about the state of the field because there were few resources that provide overall context.” The team hopes that “the materials provide that context and build a solid foundation of knowledge amongst interested groups around the globe who may have only seen stories on newsfeeds.”
Currently, there is a real debate happening in the field about accurately describing risks and benefits to participants and examining the vital questions about the goals of cure research. Ms. Handibode explained that “bringing community deeper into this debate is the goal of the CUREiculum”. Questions about how to ethically build capacity in resource limited settings and how to manage expectations in pediatric and adult research are essential in the conversation about cure research, and will pave the way for how the field progresses forward.