From UNAIDS on down, "90-90-90" has been the big numerical buzzword in HIV policy circles the past few years. It's shorthand for three goals: 1) Getting 90% of all those in a certain locality (city, county, state, country) living with HIV to know that they have it; 2) getting 90% of those people linked to care and on treatment; and 3) getting 90% of those people virally suppressed, or undetectable, meaning that they've not only tamped down their own HIV but are incapable of passing the virus to others sexually -- thereby helping reduce new infections.
Experts say that any particular locality that meets or exceeds those three benchmarks will be on track to bringing new infections to zero going forward and basically ending its epidemic (EtE). Cities that have committed to this goal are called Fast-Track Cities.
Well, early this month, New York City, once the global center of the epidemic, announced that it is the first of the U.S. Fast-Track Cities to meet those benchmarks -- and the city has not only met them but slightly exceeded them. The announcement follows several years of collaboration among HIV community activists and public health officials to get to this goal.
How did New York City do it? Especially when many thought that San Francisco, which has recently experienced dramatic plunges in new HIV cases thanks to ample funding and good policy, would get there first. We talked to some of the key people involved to get the answers -- as well as to ask what lessons other cities can learn, and what New York City must do going forward to close the final gap.
New York City Provided Free Health Care to Every Resident -- Including Undocumented People
Between the expansion of Medicaid eligibility with the passing of the Affordable Care Act, a traditionally very robust and generous AIDS Drug Assistance Program (ADAP) for income-qualifying HIV-positive folks that not only provides meds directly but will cover premiums and copays on people's private plans, and various platforms such as ADAP and public hospitals/health centers that will treat undocumented residents unable to qualify for other coverage options, New York City has essentially become able to give health coverage to every resident, thereby making sure that HIV-positive residents can access meds and care, and that residents at risk for HIV can get their HIV and sexually transmitted infection (STI) prevention needs met.
"NYC's story is a really remarkable example of what happens when a population achieves what in effect is universal health care," says Demetre Daskalakis, M.D., M.P.H., the openly gay deputy commissioner for the New York City health department's division of disease control, who has in many ways become the face of the EtE effort in the city.
The HIV Community Was Heavily Involved in the Planning
Unlike New York City's Bloomberg mayoral administration in the 2000s, which largely blocked community groups from input into policy decisions, both New York State and City efforts to EtE were devised in collaboration with -- and even blueprinted by -- longtime HIV nonprofits including Housing Works, Treatment Action Group, and the Latino Commission on AIDS. "They're the ones who've been doing this work the last 30-plus years," says Oni Blackstock, M.D. M.H.S., assistant commissioner for the health department's Bureau of HIV/AIDS. "They allowed us to have our finger on the pulse of the issues driving the epidemic," she says, such as a dramatic increase in the use of crystal meth among young men who have sex with men and trans women of color. (To address that, the health department collaborated with GMHC to create Re-Charge, a harm reduction counseling and group support program.)
Kiara St. James, cofounder of New York Transgender Advocacy Group, who is living openly with HIV, says, "The city was really intentional about including marginalized communities, particularly black and brown ones like the ballroom scene, to make sure we have better agency over how programs are run."
New York City Prioritized Getting People on HIV Meds Immediately -- and Keeping Them Virally Suppressed
The state and city promoted so-called "rapid start" programs that would start people on HIV meds the same day they were diagnosed with HIV -- and they also promoted adherence programs at health centers like Amida Care where low-income people living with HIV would get cash incentives every time their HIV was undetectable on their lab tests. "Having that extra income has been very impactful for a lot of trans folks living with HIV," says St. James.
Others feel the rapid start HIV treatment programs have helped remove the fear and panic many people felt when waiting to start medication was the standard of care. Says the Rev. Charles King, the openly positive cofounder of Housing Works, who has played a major role in New York City's EtE efforts: "What happens if at that moment of terror where you say 'Oh my God, I'm HIV-positive,' someone says to you at that moment, 'If you start this pill today, HIV will never negatively impact your life?' That gives people huge motivation from Day One."
New York City Made PrEP Available to Everyone
The city and state developed an ADAP-like "PrEP-AP" program to reimburse providers for the cost of visits and labs related to pre-exposure prophylaxis (PrEP), when those at risk for getting HIV take the HIV meds Truvada (emtricitabine//tenofovir disoproxil fumarate) or Descovy (emtricitabine/tenofovir alafenamide) for preventive purposes. But Daskalakis concedes that the city's PrEP uptake process is still more complicated than getting newly diagnosed people on HIV meds.
It Developed Excellent Surveillance to Track the Epidemic in Real Time
According to openly HIV-positive Mark Harrington, cofounder of Treatment Action Group, which has played a big role in EtE efforts, the city since the late 1990s has been fine-tuning its HIV-diagnosis reporting data to so that it can see almost in real time where in the city HIV is trending, and among which groups, thus enabling it to intensify efforts in those areas or groups. The state and city also got non-medical centers serving people with HIV to report their clients' viral loads as a way of measuring treatment success on the macro level -- and it made underperforming centers accountable for improving their outcomes, such as by urging them to merge with other agencies.
It Expanded Housing and Rent Coverage to All Low-Income People Living With HIV, Not Just Those With an AIDS Diagnosis
In 2016, after a years-long battle on the part of HIV activists, the state announced that it would cover housing, transportation, and nutrition support for all income-eligible HIV-positive New Yorkers. Previously, residents had to progress to an AIDS diagnosis (CD4s below 200 and/or certain illnesses or infections) before becoming eligible for such support. Also, in 2014, a law was passed that said that income-eligible people with HIV should not have to put more than 30% of their income toward rent.
"It was an ugly fight" to get such supports, says openly HIV-positive Jason Walker, campaign coordinator at VOCAL-NY, which has played a large role in EtE efforts. "But it's really positively impacted newly diagnosed LGBTQ youth of color."
The efforts to shore up affordable housing for those living with HIV were based on a large body of research showing that treatment adherence and overall health and wellness outcomes are directly linked to having stable housing.
It Routinized HIV Testing in All Available Places
Community health centers and emergency rooms -- not just the city's (revamped) sexual health clinics and HIV nonprofits -- were urged to make HIV testing routine, in order to pick up diagnoses in nontraditional settings and then connect people immediately to care -- or to PrEP and other preventive support if people tested negative.
It Locked Down Buy-In at Every Level
From Governor Cuomo to Mayor DeBlasio to City Council to the health department and community groups, everyone was on the same page from Day One in terms of committing to EtE and devising a plan that everyone could live with. "Everyone put their all into this and worked closely with the community on the ground," says Harrington. "There were calls every two months for the EtE subcommittee at the (New York state) AIDS Institute, which would do workshops in every region in the state -- sometimes on a quarterly basis. There was really good coordination and strong transparency about who was or wasn't doing well."
It Replaced Fear-Based Poster Campaigns With Inclusive and Upbeat Ones
The Bloomberg administration's health officials upset and offended members of the HIV and LGBTQ communities with HIV prevention ads in subways and bus shelters highlighting scare factors, such as one's heightened risk (when HIV-positive) of getting anal cancer or bone loss. Under DeBlasio and Daskalakis, however, the city ran ads promoting HIV testing, treatment, or PrEP that showed a diverse array of real-life New Yorkers and focused on sexual happiness and wellness. Particularly, the ads touted the good news of undetectable equals untransmittable (U=U) -- the fact that people with HIV on treatment with undetectable virus are incapable of passing HIV to sexual partners.
Lessons for Other Places -- and for New York City Itself
In all these components are lessons for other localities. However, many of those spoken to for this story point out that (mostly southern and midwestern) states that have not taken such measures as expanding Medicaid coverage, or legalizing access to clean needles amid a national opioid injection-drug epidemic, will have a difficult time getting to 90-90-90. "I look at my friends in the South who don't have the same coverage options we do here, and their challenges are really significant," says Daskalakis.
Perhaps there are also lessons here for getting New York City's rate of annual infections from its current record low of just below 2,000 to zero. Remaining infections are heavily concentrated among young men who have sex with men and transgender women of color, many of whom have needs -- from mental health and substance use to housing and employment -- that often complicate efforts to stay HIV negative, or to adhere to HIV meds for those who are already positive. "It's not enough to just tell someone to take a pill," says Blackstock. "You have to look at the whole person."
According to St. James, organizations specifically by or for groups such as men who have sex with men or trans women of color, such as New York Transgender Advocacy Group, need more financial and technical support from the state and city, as they are often the only groups that people in those demographics feel comfortable reaching out to. "We need to create more spaces of wellness where people can really tune in to their potential," says St. James.
Such spaces, she says, would include educational and vocational development and opportunities for low-income LGBTQ youth and trans women of color that exceed such traditional opportunities as working as a peer advocate at an HIV agency. According to Blackstock, the city has worked with community groups on some such programs, including the Career Power Source annual event, produced by the National Working Positive Coalition.
Plus, says King, efforts are underway to get the state to increase from one year to five the period of time it will disregard someone's income level when renewing their housing and other assistance. This, he says, would further decrease people feeling torn between advancing in a career and losing their safety net. "People who get up and go about their day with a vocation are more likely to take care of themselves," he says.
And, says Walker, despite New York City's fairly robust network of service providers, even more are needed in at-risk neighborhoods outside of Manhattan, such as in Brooklyn or the Bronx. "I like the AIDS Healthcare Foundation one-stop-shop model of places that are welcoming and not stigmatizing," he says.
But despite New York City still having a gap to close, particularly among vulnerable residents struggling with broader issues such as housing instability, employment, and fragile mental health or drug use, nearly everyone involved agrees that the city, with the state's help, has reached a milestone that serves as a beacon for other localities.
"We've had a truly supportive mayor who made very good appointments around this issue," says Walker. "It's involved key players who had a clinical analysis about structural oppression and were radical in their approaches."
But, reminds Daskalakis, "It's not about getting to 90-90-90 and being done. It's about staying there and getting to 100-100-100. This isn't the time to relax and give one another high-fives, but to further accelerate what we're doing to hit this 10% we haven't reached yet."