NAPWA: The National Association of People with AIDS

I would like to share the experience of attending NAPWA's (National Association of People with AIDS) "Helping Communities Build Leadership Conference" held in Phoenix, Arizona in January 2001. The purpose of the conference is so that people, like me who actually have HIV infection and AIDS, can learn how to participate on various decision-making bodies, such as Boards of Directors of AIDS Service Organizations and HIV Planning Commissions, Community Advisory Boards, and any other group that makes decisions which directly affect my life and your life, and the quality of our lives.


At this conference, I learned a great deal about community activism and advocating for people with HIV. One important skill to have is to be able to abide by "Roberts Rules of Order". Every group or body tries to conduct itself by these rules. So, once you learn the rules, you know exactly when to raise your hand, how to ask a question, when to make a point of clarification and when to present a proposal to the group so that they can vote on it. (I'm still learning and I hold a seat on the Los Angeles HIV Planning Commission). The main thing is to participate. Don't be afraid to voice your opinion.

History and Current Services

Let me give you a little background about NAPWA. It was founded in 1983 by people living with AIDS that were part of the Patient Advisory Committee of the Second National AIDS Forum held in Denver, Colorado. Since then they have established several local PWA coalitions and other groups around the country. Presently they have an office in Washington, DC. Their mission statement is: "to advocate on behalf of all people living with HIV in order to end the pandemic and the human suffering caused by HIV/AIDS."

  • The Educational Department's goal is to help individuals live healthy with HIV by providing an array of information from HIV testing to HIV treatment. They have a free quarterly newsletter called Medical Alert.

  • The Community Development and Training Department's goal is to train people living with HIV to provide leadership in their communities, and to develop skills that help them to become more pro-active.

  • The Public Policy Department's goal is to advocate for national leadership on AIDS policy issues.

Let me share how I got involved with NAPWA and how I was invited to attend their regional training. As a woman living with HIV, I represent and hold the HIV+ women's seat with the Los Angeles Commission on HIV Health Services. In order to advocate effectively for my constituency on this commission, I felt that I needed further training about the different government funding sources and how our community can access them. Some of the issues discussed at the training were HIV Prevention, Community Planning and how to best allocate the limited dollars that will have the greatest impact in the communities that are hardest hit, (like the gay community for example).

Money for AIDS

Other topics included; the basics about the Ryan White CARE Act, the use of Epidemiological (includes HIV statistics and how it is utilized) Data, Needs Assessment and Priority Setting. Priority Setting is a yearly process that all the County Councils and Planning Commissions go through. It is a way to identify the most important areas that need the most funding and resources. These Priorities are then used by the County's to allocate funds.

After going from session to session and getting the basics on these issues, I have a better understanding on how these issues are important for people living with HIV/AIDS. The Ryan White CARE Act is the emergency governmental funding source that allocates monies for services in local communities. With Ryan White CARE Act monies we have been able to have free medical care, and social services. Without this fund, these services would be nonexistent. The federal government wants to take this fund away because they perceive that HIV is no longer an emergency. As people living with HIV/AIDS we need to advocate keeping this funding source alive, and we need to form activist groups to increase the budget. It is important that we all get involved in our communities. The NAPWA Conference can help guide you in becoming involved. Usually, they require some information from you to keep in their records. Everyone is welcome to contact them. After the planning is completed, NAPWA will contact those persons who may benefit most by attending it. Some scholarships are available for community members who cannot afford to participate.

Use Your Voice

It is hard to make changes if you feel you are alone. However, your participation in your own Community Planning Groups, and or some type of Advisory Board or by attending the local commission on HIV Health Services meeting, you will soon feel that as a PLWHA (Person living with HIV/AIDS) your voice needs to be heard. Your opinion is important and we all have to participate as volunteers at these meetings in order for the services to continue and to fulfill our needs.

In addition, there is always legislation in front of the US Congress that could affect how we live and survive with HIV/AIDS. To find out how you can help, and what Congress person or Senator you can write to about AIDS laws, policy and funding give the folks at NAPWA a call.

It is crucial that PWA's participate because we are the experts on living with HIV/AIDS. Anyone is capable of learning the rules and procedures and the participation of people with HIV is desperately needed. If you have any questions about NAPWA call them at 202.898.0414. If you would like more information about the issues discussed at the conference or in this article, please call me at 323.965.1564 or 1.800.554.4876 -- Take care, Brenda.