By Richard Firstman
NIH funds research grant for a partnership between SPH and city’s Department of Health
It’s been nearly two decades since HIV transitioned from a fatal diagnosis to a manageable condition, and in the last few years the treatment has become scarcely more complicated, or expensive, than a daily pill and quarterly blood work. As long as an HIV-infected person is diagnosed with reasonable timeliness and goes on standard antiretroviral therapy, the likelihood nowadays is that the virus will be suppressed to a level considered undetectable and never progress to AIDS. It’s not a cure, of course, but as a practical matter of life expectancy, it’s close.
And yet, there is this jarring statistic: Only 20 to 30 percent of the 1.1 million people infected with HIV in the United States have undetectable viral loads; one 2010 study put it as low as 19 percent. The gap is not as wide in New York City, but still a majority of the city’s 125,000 HIV-positive population — 52 percent — is not getting the care and treatment needed to suppress the virus. Some have not yet been diagnosed. Others have been diagnosed but haven’t started treatment. Still others get treatment but don’t maintain it. Beyond their own long-term prognosis, there are obvious implications for controlling the spread of HIV.
In late 2009, the New York City Health Department launched one of the nation’s first large-scale programs aimed at linking HIV-infected people most in need with ongoing care and case management. Inspired by a model developed in Boston and first used in Haiti, the city’s Ryan White Care Coordination program, named for the federal HIV/AIDS program that provides the funds, targets those at the highest risk of poor outcomes: People whose HIV infection, and health in general, tend to take a back seat to more immediate life challenges such as poverty and housing, mental health issues and substance use.
The program is administered through 28 medical and social service agencies around the city, each with case managers who work to help address the broad array of struggles their clients face in navigating the HIV care system. The emphasis is on access to care, health education and, ultimately, adherence to antiretroviral treatment, which needs to be strict and permanent to achieve and sustain an undetectable viral load. At any given time, about 3,300 people are enrolled in the city’s Care Coordination program — more than 6,000 total in the four years since it began.
The question, of course, is whether it is working: How many of those HIV-positive patients have achieved viral suppression, and to what extent is the program effective in reducing that troubling 52 percent statistic? Is it successful over the long term, enough to be a model that should be adopted by cities and counties throughout the country?
These were the questions that occurred to Denis Nash of CUNY’s School of Public Health when he learned about the program from his colleagues in the city Health Department’s HIV bureau. Dr. Nash, a professor of epidemiology specializing in HIV and public health surveillance, began discussing these questions with Mary Irvine, the department’s director of research and evaluation for HIV care and treatment. The result was a $3.1-million research grant recently awarded by the National Institute of Mental Health for a joint five-year study by CUNY and the Health Department, with Nash and Irvine as joint principal investigators.
“When you get out in the real world, you see all the barriers and challenges for people with HIV trying to get access to the treatment they need,” Nash says. “You’ll hear many health care providers and community organizations say it’s hard to get people to deal with their HIV when they have so many fundamental issues affecting their lives, whether it’s housing, putting food on the table or other issues. The Care Coordination program takes a supportive, holistic and coordinated approach to help them deal with those things so they can begin to deal with their HIV. It should be effective when it’s implemented on a large scale, but there’s a real need to assess and quantify the effectiveness.”
Irvine says that early assessments have found that clients of the program have become substantially more engaged in primary care and made significant improvements in viral load suppression. But the grant will allow the kind of rigorous “implementation research” that yields hard evidence and knowledge about the program’s real-world efficacy compared with usual care.
“Nationally, there has been a clear call from the CDC and others for research to determine the effectiveness of specific HIV interventions,” Irvine says. The findings, including interim reports to be issued along the way, may influence HIV policy across the country. “Our purpose is to determine whether this model shows sufficient and sustained effectiveness and cost-effectiveness, to recommend scaling up for use in other jurisdictions.”
The grant is the first NIH-funded research partnership between the CUNY School of Public Health and the city’s Department of Health. Dr. Ayman El-Mohandes, dean of the school, says the research illustrates SPH’s mission in New York. “This is an example of the collaborative work that our faculty are engaged in with the practice community. Implementation science that expands the relevance of evidence-based to practice-based success is aligned with the School of Public Health’s mandate.”
Nash and Irvine’s data will be bolstered by interviews with 600 actively enrolled Care Coordination participants during the five-year study. Their study will also be guided by an advisory group comprising HIV care providers, community-based organizations, public health professionals and academics. The advisory group includes some who are living with HIV.
“We’re focused on two measures of effectiveness,” says Nash. “Do participants have regular engagement with HIV care as opposed to cycling in and out for long periods, compared with people who are not in the Care Coordination program? And do they achieve viral suppression and sustain it? Then, if the program is effective, how is it effective? Are some parts more important than others? And the third question is whether it’s cost-effective — is it a good use of public health care funds that other jurisdictions may want to use to improve outcomes?”
The researchers also plan to interview 120 people who enrolled in the Care Coordination program but dropped out. “We want to explore if it is more effective with certain groups than others, and if the program targets participants well,” Nash says. “And once they’re in the program, what are the enablers and barriers to achieving good outcomes?”