So Long to New York's HIV Care Networks

As of December 31, 2010, the HIV Care Networks of New York State will no longer exist. The New York State Ryan White Part B HIV Care Networks' mission is to promote a coordinated community response that resulted in improved access to care and supportive services for those infected with HIV/AIDS.

My first reaction to the shutting down of the Networks was utter panic and fear. As a woman of color living with AIDS for the last 18 years, I worried that we, people living with AIDS, especially women, would become invisible in the face of chronic care management.

The choice between funding needed services and maintaining the Networks is a no brainer. The need for services was apparent in the face of the new law authorizing routine HIV testing. People living with HIV/AIDS need to maintain services. But who will now be our voice to the powers that be?

The Ryan White legislation was amended and reauthorized as the Ryan White HIV/AIDS Treatment Extension Act of 2009. This piece of legislation, signed by President Obama, authorized continued program spending until September 30, 2013 (but that is another story). The work of the Network is conducted through the following committees: Policy Advisory and Education, Executive Committee, Consumer Involvement Committee, and the Care and Coordination Committee.

The General Network meeting, held on a monthly basis, is a place for everyone to become involved no matter what your background or level of understanding. The Networks' responsibility is to develop regional service plans and provide advice to the AIDS Institute regarding regional service needs. Each network contracted through the AIDS Institute was housed within a lead agency within the region. The Networks, established in 1998, have 11 locations in New York State -- in the five boroughs as well as Hudson Valley, Long Island, Northeastern, Central and Western New York. The members of each Network include people living with HIV/AIDS, clinicians, service providers, faith-based and community leaders, and advocates.

I have been connected to the Networks for the last 10 years in some form or fashion. It is where I went to find medical providers to have a healthy pregnancy, get general information, meet the players who do the work all the way up to Albany and our government officials, support for the Department of Health oversight bill, and for information about ADAP. It is also where I steered many women who were ready to do more than complain about what was not happening in the CBOs [community-based organizations] and clinics they utilized. The Networks have even empowered those in recovery with a place to belong and fit in, in addition to the rooms of NA [Narcotics Anonymous].

After my initial panicked reaction, I had a revelation! I remembered the early days of the epidemic -- how we made noise and garnered attention to issues that mattered most to us and got results, and then I was OK. The Networks have built communities of individuals and fostered alliances with strange bedfellows in the name of "AIDS Inc.," while obtaining services vital to the population in need of them.

So what will happen after December 31? Where will individuals go to get information and continue to advocate for better services? I attended a consumer involvement committee meeting in Manhattan, where CBOs have stepped up and opened their doors to the members of that Network with space and access to copy machines and computers to continue the work that has been the lifeline for many.

Here in New York City the work will continue on some level, but for those in the Northeast regions, Rochester/Finger Lakes and Nassau-Suffolk regions, where stigma and discrimination are still alive and transportation is hard to come by, it might be a different story.

The Networks are a great resource and have empowered persons living with HIV/AIDS. Some have found their voice at the Networks while others have learned the true meaning of living with AIDS. There was always an opportunity to hone your advocacy skills or identify a needed service in your community or region, or the creation of a needed support system for a newly infected individual.

While the Networks have served us well, we have an obligation to continue the work that has begun. As a member of the Bronx and Manhattan Care Networks, I will miss the support and leadership that has been developed as a result of these bodies. The Network was the place to bring issues and concerns, to gain an understanding of this machine called AIDS Inc., to rally support and movements of people; the place where we could honor and/or mourn the loss of friends and comrades in the struggle. Where title, financial status, race and gender had no place, but the tie that binds was living and surviving AIDS.

In the face of health care reform, I realized that Ryan White services were more important than the Networks. But at the same time I refuse to submit to defeat. We as a community have grown stronger and wiser. We now understand the policies and processes to obtain change. Again, as a women of color, living with the virus for more than 18 years, I now understand the value of grassroots advocacy and bringing voice to the community where there is silence. The problem is, are we ready for that responsibility? Are we ready to take care of self and the community as well? The community-based organizations have stepped up to fill in the blanks; the faith-based communities are now armed with information and the tools to provide support. HIV/AIDS has in effect become a chronic manageable disease. The fear that once was portrayed on the television and in our communities seems to have disappeared.

Have we forgotten people are still dying?!

The dissolving of the Networks is not as bad as it could be. It now requires the community to stand up and voice our needs and demand accountability. This action requires the community to own its responsibility in reducing the ignorance and stigma along with the number of infections. We have to take care of us.

Send Rusti an e-mail.