New York's efforts to end AIDS as an epidemic by 2020 are often met with skepticism, and some regard the State's Ending the Epidemic (EtE) plan as audacious, unrealistic and even ridiculous. My objective here is to address the most common misconceptions about the plan's viability.
Misconception: "Ending the Epidemic," as Defined, Is Arbitrary
The NY State plan's definition of ending the epidemic entails reaching two goals by 2020: decreasing annual new HIV infections from about 3,000 in 2013 to below 750 and getting 85% or more of HIV-positive New Yorkers to achieve viral suppression, so they stay healthy and virtually unable to transmit HIV to others.
Why below 750? First, because 750 is few enough infections that each new case can be treated as a sentinel event, in which the newly diagnosed person is quickly engaged in care and protection is offered to anyone at risk within that person's network.
Furthermore, getting below 750 involves accomplishing some tremendous outcomes, including scaling up comprehensive health, social service and vocational programs for those with HIV, as well as those most at risk of becoming positive, including men who have sex with men, transgender people and injection drug users.
Finally, the 750 threshold marks an important turn in the financial curve: For the first time ever we will see the number of New Yorkers living with HIV -- and therefore the total cost of HIV care -- start to decline. By reinvesting just the Medicaid portion of those savings (in the works via a Value-Based Payment system) these resources can be used to further drive down infections and to ensure the health of HIV-positive people.
Misconception: The Ending the Epidemic (EtE) Blueprint Lacks Accountability, Is Overly Ambitious and Little to No Progress Has Been Made
The EtE Blueprint, developed by a task force of 63 advocates, service providers and researchers from across the state, contains 37 recommendations that, if fully funded and implemented, will achieve the overarching EtE objectives. Significant progress has already been made on almost every recommendation.
Metrics and accountability are built into the blueprint, and a report card on all 37 recommendations will be issued this fall, but here's a snapshot of our achievements from the first two years.
Substantial energy has gone into improving state and NYC data. Never before attempted viral suppression matches have been accomplished, and we have launched new initiatives through managed care to return people to care and achieve viral suppression. Two new initiatives will be launched this year identifying HIV-positive people in the NYC shelter system and linking them to care and identifying Article 28 public health care facilities where people out of HIV care are going for other services. Our HIVQUAL program is now demanding viral suppression reports on entire facilities, not just their designated AIDS programs. We have engaged in massive provider and public education about pre-exposure prophylaxis (PrEP) and post-exposure prophylaxis (PEP) and are setting up PrEP delivery networks.
Most recently, Governor Cuomo proposed three key legislative changes to New York State law:
- To make the offering of HIV testing mandatory and routine in all licensed medical facilities to everyone age 13 or older, with no upper age limit.
- To give minors the right to consent to HIV treatment and to PrEP and PEP.
- To extend access to state surveillance system data to case management and care coordination systems to support linkage to treatment and care retention.
These reforms build on last year's EtE legislative victories: surveillance system access improvements for clinical providers, prohibiting the use of condoms as evidence of two sex work misdemeanors, partial victories on syringe decriminalization and a 30% rent cap for low-income New Yorkers receiving HIV-related rental assistance. Additionally the Governor took executive action twice to circumvent a recalcitrant state Senate: first, to insure that Medicaid programs and state-regulated insurance companies cover transgender health services, including gender reassignment surgery; and second, to reinterpret the state Human Rights Law to provide full protection to transgender persons.
Misconception: The Blueprint Is Too Expensive to Implement
Much current skepticism hinges on Governor Cuomo's failure to keep his $200-million EtE funding promise this past year, but it's important to keep that shortfall in perspective. Including Medicaid, NYS already spends $2.5 billion on HIV/AIDS annually.
Moreover, that pledged $200 million didn't come from the HIV/AIDS community. While this funding gap between the pledge and the actuality is disappointing, the community's EtE funding demand is a far more conservative $70 million in new money this year -- $20 million for the AIDS Institute and $50 million for rental subsidies.
As of this last state budget cycle, the city and state have committed nearly $50 million in new money annually to fund EtE activities. This year, we got only $10 million in new AIDS Institute funding, but counter to naysayers' assertions, it is in fact new money from an innovative source: state-share Medicaid savings that, under our Medicaid global cap, must be invested in health-related activity.
The $2 billion set aside in this year's budget for new housing initiatives has not yet been allocated, and we remain optimistic about receiving something close to our requested $50 million, $33 million of which is already matched in New York City's budget to guarantee stable housing for all low-income city residents with HIV. In addition, according to a letter from NYS Department of Health Commissioner Howard A. Zucker to the End AIDS NY 2020 Community Coalition, the NYS Office of Health Insurance Programs is preparing an application for federal matching dollars for New York State's EtE investments.
To achieve the "below-750" goal by 2020, rental assistance or supportive housing is needed for an estimated 6,000 NYC residents and another 4,000 to 6,000 people statewide. If $50 million of the new state housing money is dedicated to this purpose, matched with New York City funds, we will be expanding housing resources by $83 million this year, allowing us to provide a rental subsidy to every diagnosed, HIV-positive, New York City resident who needs it.
Once the AIDS epicenter, New York is now at the forefront of progress because of the courage of early activists who were fighting for their lives. Their audacity remains just as necessary today. We didn't galvanize our current momentum on HIV by simply saying, "We need to do better." We did it by forging an ambitious, informed path to ending AIDS as an epidemic in our state. It hasn't been sloganeering. It's been years of hard work every day, including unprecedented collaboration between the state, the city, providers, consumers and the community. Advancing this agenda involves risks, but those are well worth taking. Audacity promotes visionary leadership, and that's where the end of AIDS truly lives.
Charles King is president and CEO of Housing Works, Inc., and he served as community co-chair of New York State's Ending the Epidemic Task Force.