The thought of being an AIDS advocate can be intimidating. You know that you want to do something, but you may not know what to do or where to start. It can help to realize that your voice is important. What you have to say as an HIV+ person is valuable and needs to be heard by those making decisions regarding how AIDS funding is used, how clinical trials are conducted, and how AIDS service organizations are run.

You may think that there is no way for you to influence, or even meet, the people making these decisions. However, through the hard work of AIDS advocates over the years, most agencies involved in HIV work now include HIV+ representatives. Many local and national AIDS research networks, service organizations, and planning councils receive advice from HIV+ people through patient advisory groups that provide perspective on issues that are important to the HIV community.

The following is a list of groups you may want to consider joining. Participating in these groups can be rewarding, but it requires time and commitment. Before getting involved, find out what is expected of you.

Both AIDS service organizations (ASOs) and clinical research sites have CABs. Each type of CAB includes HIV+ people and, sometimes, other affected community members, but they have different goals.

An ASO’s CAB can provide valuable input from HIV+ people about the services the organization offers. Many CABs are very active. Others meet infrequently and have little impact on the direction of the agency. You can make a big difference in how effective an organization’s CAB is. Contact your local ASO to find out if it has a CAB and how to join.

Government-funded clinical trial networks are required to set up CABs to make sure that community interests concerning AIDS research are heard at the local level. CAB members offer input about studies, get research results and up-to-date information about ongoing trials, advocate for participants in the trials, and help conduct outreach for enrolling trials. See the Opportunities for Community Representatives module for research networks that have CABs.

CABs can offer so much to the HIV community. You can also get a great deal personally out of participating in a CAB. In addition to contributing to the community, you may make new friends, get a better idea of what the research site or service organization provides, and educate yourself so that you have more to offer if you look for a job down the line. If you’re not sure whether you have much to offer to the CAB, talk to people who are already CAB members. They might help you identify strengths that you’re not aware of yourself.

Depending on where you live, you could get involved with either the local HIV Planning Council or HIV Care Consortium. These groups are largely responsible for deciding what kinds of programs receive funding.

Each Planning Council and Care Consortium works differently. Many consist of appointed members, while others have a more open membership. Members may include medical providers, public health officials, staff from community-based organizations, and HIV+ people. Even if you’re not a member, you can speak before the Council or Consortium about the needs of your community.

HIV Planning Councils are located in urban areas with a high number of HIV+ people. They establish priorities for the distribution of government (Ryan White CARE Act) funding based on the services that are most needed by HIV+ people in the area.

Planning Council members attend full Council meetings once a month and usually participate on at least one Council committee. The time commitment varies from four to ten hours a month.

• To locate a Planning Council, go to the HRSA website: http://hab.hrsa.gov/programs/t1list.htm

HIV Care Consortia are regional or statewide planning groups in more rural parts of the country. Their goal is to provide a broad-based community response to the HIV epidemic in the region and to ensure that high quality, comprehensive health and support services are available to people with or affected by HIV.

Most Consortia meet at least quarterly, and many members participate on at least one committee. The time commitment varies from one to five hours a month. Call the appropriate Council or Consortium to find out about the application process.

• To locate a Care Consortium, go to the Access Project website: http://www.atdn.org/access/states/. Click on your state and then the “To Local HIV Care Consortiums” link.

An IRBis a group of people like doctors, lawyers, statisticians, researchers, clergy members, ethicists, community advocates, and others. Any hospital or research center that conducts clinical or behavioral studies must have an IRB. All trials are reviewed and approved by the IRB before they begin. The IRB makes sure that a trial is safe and ethical and protects study participants. The IRB can shut down a trial that isn’t being run properly.

If you’re interested in being a member of the IRB, be prepared to learn a lot and spend many hours reading trial designs, attending meetings, and talking with other IRB members. It’s important that HIV+ people be involved in the IRB process so that other members and researchers hear your concerns and priorities. However, be aware that this is a big commitment. If you’re new to community advocacy, an IRB probably isn’t the easiest way to get started.

To find out about IRB opportunities and application requirements, call clinical trial sites where you live.

• To locate HIV clinical trial sites that have IRBs, go to TrialSearch: http://www.acria.org/clinical_trials/index.html

All not-for-profit ASOs have a BOD. Unfortunately, many BODs have few or no HIV+ members. This lack of representation at the top of an organization can keep the agency out of touch with the everyday concerns and challenges of the people it’s meant to serve. The BOD is responsible for the agency legally and financially. It also sets policy, hires and fires the executive director, and makes sure that the mission of the organization is on track.

Since one of the main responsibilities of the BOD is the financial stability of the organization, many boards require members to give or raise a certain amount of money. Some BODs make exceptions so that they can include people who can’t meet the financial obligation but have other valuable things to offer.

Most BODs meet monthly or every other month for a couple of hours. Being a board member can require a commitment of two to four hours a month for meetings and other activities.

If you’d like to be a member of the board of a local ASO, set up a meeting with the board president or the agency’s executive director.

Community involvement is an important way of keeping AIDS groups on track. Being an advocate on a board or planning council can be very rewarding. It allows you to voice your opinions and stand up for what you feel is important to you and your community. However, it also adds extra responsibilities and takes up some of your time. The following tips may help you to balance your physical and emotional health with your advocacy efforts.

• You and your health come first.
• Think about what you’d like to accomplish before joining a group.
• Only take on projects that you think you can see through.
• Find people to work with who understand the issues and will support you in your efforts.
• Try not to let disagreements become personal.
• It can be scary to speak up, especially the first time you disagree with someone in power. Think about how you might feel beforehand so that you’re prepared.
• You may meet resistance to your ideas. Try to stay focused on the issue even if you feel you are being personally attacked.
• Be careful not to let advocacy become an opportunity to give yourself power over other people.
• You may feel shut out by some people who have been involved in HIV advocacy for many years. Recognize that you have a voice and ideas to add to the work that has gone before.
• Learn from long-time advocates.
• Conflict is often a necessary part of any kind of advocacy, but make sure you are not creating conflict for its own sake. If that happens, it’s time to pull back and refocus on the real issue.

1		HRSA HIV/AIDS Bureau. (2005). Ryan White CARE Act. Retrieved October 2005 from http://hab.hrsa.gov/history.htm.
2		Washington Protection and Advocacy System. (2005). Self-advocacy: knowing your rights, and standing up for them. Retrieved October 2005 from http://www.wpas-rights.org/self_advocacy.htm.