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Aside from being required by internationally accepted ethical standards for AIDS vaccine research, there are many important reasons why communities should be involved in AIDS vaccine research. Of course trial volunteerism is important - without healthy, HIV-negative individuals who are willing to be part of vaccine clinical trials, making an AIDS vaccine would be impossible. But communities have much more to contribute to the effort than just that.
Historically, communities have shaped and driven the research agenda for the development of AIDS treatments - pushing governments to commit resources for research while at the same time ensuring the protection of individual trial participant rights. Also, some of the earliest AIDS education and prevention efforts were started by concerned community members who gathered accurate information and took it to the streets to spread the word. History has shown us the power communities wield when it comes to HIV/AIDS and we should apply these lessons to the development of AIDS vaccines as well.
It is important that the public and the communities most impacted by HIV/AIDS are aware of vaccine research efforts and the potential public health benefit vaccines will hopefully offer one day. Also, informed and involved communities not only make vaccine research possible, they can speed up the process by advocating for wider public support, governmental commitment and funding, and by monitoring research efforts in the public and private sectors.
Key issues related to community involvement include:
- Community Education: Educating the public about AIDS vaccines and vaccine research is the first step to gaining community support and involvement. Without broad educational programs, mobilizing communities around this issue is incredibly difficult. In order for individuals to participate in clinical trials, communities must have information about why AIDS vaccines are important, how the research process works, and the risks and benefits of participating. Only with all this information can individuals make an informed decision about whether volunteering is right for them. In addition, educated communities will be more likely to support trial volunteers and recognize the incredible contribution these individuals are making in the fight against HIV/AIDS. Later, when an AIDS vaccine becomes available, its success will depend on whether or not the public utilizes it. This will require public education to address the public's questions about vaccine safety and ensure people understand the benefits and limits of the vaccine.
- Advocacy: Community-based vaccine advocacy is needed in multiple areas: advocacy for research into new prevention technologies (such as vaccines or microbicides), advocacy to ensure community priorities and needs are factored into the research agenda (like improving access to AIDS treatments), and advocacy to build public support for vaccine research.
- Involvement in clinical trials: Communities can improve the process of vaccine clinical research by ensuring research is designed appropriately for the populations that will be involved in a study. This involves examining mechanisms to protect the rights of trial participants, incorporating community priorities into the research agenda and finding ways for communities to benefit from research activities.
Another important way community members can get involved is by participating in Community Advisory Boards (CABs). Participation in CABs and other community involvement activities fosters leadership outside of the research institution as well.
See the Clearinghouse section Participation in a Trial for more information.
- Policy and legislative change: Policy decisions have an enormous impact on the development and delivery of HIV/AIDS prevention and treatment, as well as vaccine development. New policies grounded in sound public health and supported by the community are absolutely necessary to ensure people have access to effective HIV prevention along with the best available treatments all while adequately funding vaccine research.
Vaccine development is a long and expensive process. It can cost hundreds of millions of dollars to develop and test an AIDS vaccine and a decade or more to complete the process. In order to develop a vaccine for AIDS as soon as possible, advocacy and support for public sector funding and private research efforts must be sustained over many years.
See the Clearinghouse section on Policy for more information.
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