Last week, the Centers for Disease and Control released a new Vital Signs report showing that only 30 percent of Americans with HIV have their virus in check. Around two-thirds had been diagnosed but were no longer in care. Young people were least likely to have the virus under control: Just 13 percent of 18-24 year olds did, according to the CDC report.
When used consistently, antiretroviral medication can keep HIV controlled at very low levels in the body—a state known as viral suppression that allows people with HIV to live longer, healthier lives and reduce the likelihood they will transmit HIV to others.
In New York City, considered to be the nation’s epicenter with close to 120,000 confirmed or presumed cases of HIV, the news was somewhat better.
During 2013, 2,832 people were newly diagnosed with HIV in the city and 1,784 people were diagnosed with AIDS, continuing a downward trend. What’s more,
New York posted higher marks than the nation for viral suppression, according to Dr. Demetre Daskalakis, head of New York City’s Bureau of HIV./AIDS Prevention.
Daskalakis spoke to City Limits on the sidelines of the World AIDS Day conference in Harlem on Monday, where the talk was about ending the virus by 2020.
Gov. Cuomo’s ambitious “Bending the Curve” plan announced in July was also on many lips. Among other things, the plan aspires to retain people in care, thus increasing viral suppression rates and lowering the number of infections.
But the governor’s plan faces some daunting challenges. One is poverty. Another has haunted the virus since the first deaths were reported in 1981: stigma.
Poor and Positive
“New York City is a good place to get HIV care,” and does a good job linking people to care, according to Daskalakis, but a lot more needs to be done to improve retention rates, particularly among low-income people and communities of color.
Of the 86 percent New Yorkers who have been diagnosed with HIV, 77 percent end up in care but only about half that number are retained in care. Among those who are retained in care, 90 percent achieve viral suppression.
“The city has the medical infrastructure to make the disease undetectable,” he said. But how to keep HIV positive people attached to that infrastructure remains a key challenge (an issue with echoes in the fight against hepatitis C).
The prevalence of the virus was called by some at the conference a “social justice” issue. The problem isn’t really insurance coverage but rather that low-income people face steeper challenges to managing the disease. “If they don’t have a place to stay, don’t have finances to access and stability, all of a sudden HIV doesn’t matter very much,” Daskalakis said.
While Manhattan has an ongoing epidemic, the city, he said, needs to focus on the Bronx, Brooklyn and parts of Staten Island and Queens. “The truth is if you are looking at a map for poverty and you look at a map for HIV, they are 100 percent overlapping,” he said. “If you look at where the deaths are, where the highest disparities are, it happens to be communities with more poverty.”
Homelessness figured prominently in discussion at the conference, where AIDS activists celebrated the recently approved “30 percent rent cap,” providing affordable housing protection under the state-funded HIV/AIDS Services Administration or HASA program. Activists said the move by the state legislature will prevent more than 10,000 low-income New Yorkers living with the virus from becoming homeless while allowing hundreds more to move out of the shelter system.
While an important step forward, more needs to be done to address this key obstacle to treatment, said Michael Tikili, national field organizer for Health Gap, a global AIDS agency.
He called the lack of housing a “huge, huge issue,” and pointed to “loopholes” in the HASA program. “If you are poor and positive or a homeless kid you can’t get on to the HASA program unless you have an opportunistic infection or your CD-4 count is below 200,” he said. A very low CD4 count (less than 200 cells/mm3) is an indicator that a person living with HIV has progressed to stage three infection (AIDS).
Gay Men’s Health Crisis CEO Kelsey Louie adds mental illness to the list of challenges that infections persons face.
Stigma is sustained
As City Limits reported last year, stigma represents another formidable obstacle to care, a view Tikili shares.
“A lot of people live in places where HIV is so stigmatized they will try to keep it a secret, going to do everything they can do make sure no one knows they are taking the medication,” he said.
Stigma can be so powerful, says Matthew Rodriquez, editor of the Body.com, an online resource on the HIV/AIDS epidemic, that some people choose to avoid care altogether.
“If we keep repeating that HIV is dirty or deadly, then going to the doctor and admitting you are positive, or taking your pill every day having others know you are positive, means you become that dirty, deadly thing. And some people don’t want to deal with that,” he said.
Race and ethnicity are also parts of the picture. As with men who have sex with men (MSMs), blacks and Latinos in the city are disproportionately affected. “Do I think stigma is a piece of the barrier for care? Absolutely,” said Daskalakis. “And is race a major factor in that? Yeah.”
Almost 80 percent of new diagnoses among women are in the black and Latino communities. “That automatically is a racial disparity and it has to do with getting into that community and bringing folk into care,” he said.
Charting an epidemic’s future
While Tikili said he wants to see more action from politicians rather than words, Louie, who is a member of Cuomo’s task force, told City Limits that on a policy level “a lot is being done.”
Among other things, the task force is focusing on housing and other forms of care and has reached out to groups citywide working on the epidemic, condensing their recommendations into10.
The ones cited most frequently have been wider access to housing under the HASA program and pre-exposure prophylaxis or PrEP, which would encourage people who do not have HIV but are at substantial risk of getting it to prevent HIV infection by taking a pill every day.