NY's HIV Planning Council: 45% People with HIV, 0% Polo Players

By Adrian Guzman
Staff Attorney, The Center for HIV Law and Policy
Member, HIV Health and Human Services Planning Council of New York

Let me be clear: I have never owned a pocket protector. I have nothing against pocket protectors or the people who use them. It's just not my thing. I feel compelled to point this out because attendees of last week's New York City Mayoral Candidate Forum on HIV appeared to think that I – as a member of the HIV Health and Human Services Planning Council of New York – am a pocket protector-wearing bureaucrat who is out of touch with the needs of New Yorkers living with HIV.

At the Forum, the candidates were asked how they would ensure that the consumer voice is present within the Planning Council, which is charged with developing spending priorities and allocating Ryan White funds based on the needs of New Yorkers with HIV. One by one, the mayoral candidates denounced the Planning Council's inattention to the consumers it purports to represent. The candidates characterized Mayor Michael Bloomberg's appointees to the Planning Council as "bureaucrats"; "fancy people"; people only interested in boosting their resumes and pushing their agendas; people who played polo with the Mayor; and, yes, people with a predilection for pocket protectors. The audience's applause signaled its agreement.

This was a candidate panel, not a debate, but I'd like to make a rebuttal.

This month, I wrap up my first year as a member of the Planning Council and its Policy Committee. It's been a challenging but immensely enjoyable experience. I have served alongside some of the brightest, most diligent advocates I've met in the HIV community. We're medical and public health practitioners, social workers, case managers, policymakers, service providers, government workers, community organizers, and people living with HIV. Some of us have decades of experience working in HIV advocacy, and others (well, me) just graduated from law school. We're from all five boroughs and Westchester, Rockland, and Putnam Counties. And, above all, we're committed to ensuring that New Yorkers with HIV have access to the appropriate, quality services they deserve. And who better to guide this work than the people who receive the very services the Planning Council supports?

Per Mayor Bloomberg's Executive Order No. 162,

[a]t least thirty-three (33) percent of the positions on the Planning Council shall be allocated to individuals who are receiving HIV-related services pursuant to a grant under [ ] the Ryan White Act (including the parent of, or a caregiver for, a minor child who is receiving such services) but are not officers, employees, or consultants to any entity that received amounts from such a grant, and do not represent any such entity, and reflect the demographics of the populations of individuals with HIV/AIDS . . . .

In fact, 45% of our members are living with HIV. This isn't a mandate for the Planning Council as much as it is common sense. We wouldn't be who we are or do the work we do without the always present, always vocal members who can (and do!) speak to what it means to be living with HIV in New York. The Planning Council's work is informed by our very active Consumers Committee, which is "charged with overseeing efforts to ensure meaningful and substantial involvement of people living with HIV/AIDS in all Planning Council activities." Members of the Consumer Committee engage in community outreach and have input in the Planning Council's training and mentorship activities.

The mayoral candidates' statements and implications regarding the lack of the consumer voice within the Planning Council were not only inaccurate, but also disrespectful to all of us who work to ensure access to medical and support services in New York, and especially to the nearly one-half of the Council members living with HIV.

It has been a particularly challenging year for the Planning Council. In May 2013, the Health Resources and Services Administration (HRSA) informed us that due to a misinterpretation of a provision in the Ryan White legislation, our funding would be significantly slashed. Combined with sequestration cuts, New York is facing a nearly $18 million reduction in Ryan White funds for medical services, case management, housing, legal services, mental health services, health education and risk reduction programs, and other basic services for people with HIV. The Planning Council has worked hard to develop data-driven scenario plans that preserve, to the greatest extent possible, those services ranked highest in priority, such as lifesaving medication, food and nutrition programs, and medical case management. The perspectives and experiences of the consumers relying on these services, both those who serve on the Planning Council and those who don't, have meaningfully informed this process at every stage – not because our bylaws tell us they should or because Mayor Bloomberg's Executive Order requires it. It's simply the right thing to do.

I encourage the mayoral candidates to attend the 2012-2013 Planning Council's final meeting on Thursday, August 15, 2013, 2 – 5pm, at the NYC Department of Health and Mental Hygiene, to see first-hand who we are and what we do. There won't be a pocket protector or stray polo ball in sight, I promise.