James was diagnosed with HIV 25 years ago. He is 59 and struggling to make ends meet in New York City. He works full time in a minimum-wage job, but was evicted from his apartment because he couldn't cover a 20% rent increase. He tried to get legal help at an AIDS service organization before his eviction, but was told there was a long waiting list and no more money for emergency financial assistance.
James now "couch surfs," moving frequently among multiple friends' apartments. His friends are sick of the arrangement. His financial situation is very stressful, and James has gone back to drinking and using drugs to manage his stress. Over the years, he had a pretty impressive history of keeping his medical appointments, except for the times that he had personal challenges. Things are difficult again. James did not make his last medical appointment.
Unfortunately, James is not unique. Actually, his story of individual life challenges that threaten good health is quite common. James' HIV is a medical, social, and economic condition. In policy and academic circles, the social and economic forces that keep people like James from staying in care are called the "structural drivers" of health.
The Missing Point
Governor Cuomo's recent three-point plan to "bend the curve" and decrease new HIV infections in New York State for the first time is historic (see "Bending the Curve: Can New York End Its AIDS Epidemic?" in this issue). As Housing Works CEO Charles King says, "This step by Governor Cuomo, setting a clear goal to end the AIDS crisis in New York State, is absolutely courageous. In doing so, the Governor is reshaping the way we think about the AIDS epidemic and is setting a new standard for leaders of other jurisdictions in the United States and, indeed, around the world."
The announcement of the plan highlighted these three points:
- Identify undiagnosed people with HIV and link them to care.
- Retain people with HIV in care and support them so they can stay on treatment and keep their viral load undetectable.
- Provide access to high-quality prevention, including PrEP.
What's missing from the announcement is a fourth crucial point: providing access to wrap-around support services so that people are able to get both linked to and retained in care.
Within the world of the Ryan White program, wrap-around services are referred to as nonmedical services. They include things like nonmedical case management, child care, emergency financial assistance, food banks, housing services, substance use services, psychosocial support, and treatment adherence counseling. These are not luxuries, but core components of HIV medical care. They maximize the chance that clients will remain in care and achieve positive health outcomes, including viral suppression.
For James, 25 years living with HIV has had many ups and downs. He's faced many challenges along the way, including mental health issues, substance use, employment, housing, and a lack of social support. Each time a barrier arises, he becomes vulnerable to falling out of care. He needs the wrap-around services provided by case managers, patient navigators, and outreach workers to get him back on a healthy path.
For example, we know from research that housing is one of the strongest predictors of health outcomes for people with HIV. Homeless or unstably housed people with HIV experience worse overall physical and mental health, have lower CD4 counts and higher viral loads, and are less likely to receive and adhere to treatment than those who have permanent, suitable housing. Lack of secure housing interferes with the uninterrupted care so important for people with HIV, for whom even short interruptions in care can have significant negative effects on their own health and for the transmission of new HIV infections. An end to the AIDS epidemic requires both a biomedical response and action to address the social and economic drivers of HIV via wraparound services.
Utah is an exceptional example of innovative problem solving around the drivers of health outcomes. In 2005, Utah's Housing First program began with a very simple calculation: the annual cost of emergency room visits and jail stays for homeless people was about $16,670 per person, compared to $11,000 to provide each homeless person with an apartment and a social worker to coordinate health care, entitlements, and benefits.
Utah also ended the requirement that people solve their underlying issues (drinking, drug use, non-adherence, etc.) before they could qualify for housing. According to Nan Roman of the National Alliance for Homelessness, "If you move people into permanent supportive housing first, and then give them help, it seems to work better. ... People do better when they have stability." The state began giving away apartments and providing participants with social workers to become self-sufficient. In eight years, Utah reduced homelessness by 78%, and is on track to end it by 2015.
Why We Need Wrap-Around
To understand why wrap-around services are an essential part of ending the AIDS epidemic, we must first examine the types of services needed to support people with HIV across the care continuum. Second, let's engage in an example of demand for wrap-around services using New York City's HIV Cascade of Care and the three-point NYS plan.
The Cascade (see graph in this issue) is a way to show, in visual form, how we are doing in the U.S. in terms of getting people into care, keeping them there, and achieving viral suppression. It has five main stages:
- HIV Diagnosis: Wide-scale HIV testing is an essential first step. People who don't know they are infected are not getting the treatment they need to stay healthy. They can also unknowingly pass the virus on to others.
- Getting linked to care: Once people know they have HIV, it's critical to connect them to health care providers who can offer treatment and counseling to help them stay healthy and prevent further HIV transmission.
- Staying in care: As there is no cure for HIV, treatment is a lifelong process. To stay healthy, people need to receive regular HIV medical care.
- Getting treatment: HIV treatment involves a combination of three or more drugs taken every day.
- Achieving viral suppression: Taking ART regularly usually leads to a very low level of HIV in the body, also known as an "undetectable" viral load. This has been shown to help people live longer and to greatly reduce their chance of passing HIV on to others.
As the graph above shows, there are significant drops at each stage of the Cascade, particularly between linkage to care and retention. This is the point where wrap-around support services become most important.
In the case of James, the needed wraparound services should include legal assistance, housing assistance, substance abuse and mental health counseling, and patient navigation to follow up with him regarding medical appointments and adherence services to maximize his chances for viral suppression.
Getting more people with HIV diagnosed will mean more people entering the system and greater demand for wraparound support services. Here is an illustration of how demand for wrap-around services along the Cascade affects our ability to achieve Cuomo's goals:
- In 2011, there were about 3,000 new HIV diagnoses in NYC and about 95,000 people diagnosed earlier who already needed wrap-around services.
- This means that about 98,000 people were in need of some sort of wraparound services to remain in care.
- But after first being linked to care, about 24,000 people were not retained in care. These are the people who need to be found and brought back into care, restart treatment, and receive wrap-around services to support retention in care and to reduce their chance of passing HIV on to others.
- In 2015, the number of new HIV diagnoses could actually exceed 3,000, due to increased testing efforts. Again, this means more pressure on the health care system to appropriately invest in wrap-around services to support linkage and retention in care.
It's clear that the goal of ending the epidemic faces major challenges. Business-as-usual policies and sustaining the response at its current level of investment cannot end the epidemic. We must create a response that addresses the structural drivers of the epidemic.
Wrap-Around at Risk
Currently, the safety net of wrap-around support services is vulnerable. Many HIV providers throughout the state face an uncertain future. This year, severe cuts in federal funding have undermined the ability of HIV service providers to provide wrap-around services. At GMHC, for example, food pantry bags were reduced by 47%, substance abuse counseling sessions by 20%, and mental health counseling sessions by 10%, while 500 hours of legal counseling services were cut.
The newly passed 30% rent cap is a landmark moment in New York HIV history, providing affordable housing protection that will prevent homelessness for over 10,000 low-income New Yorkers with HIV, and enable hundreds more to move out of the shelter system. But, if we examine broader trends in HIV funding in New York, we see stagnant or decreasing resources.
The AIDS Institute's funding has been reduced by approximately $20 million since 2008. NYS's federal Ryan White grant, which supports the HIV uninsured care programs, has seen a cumulative loss of more than $30 million since 2006. Ryan White funding is based on each state's proportion of people with HIV. As NYS has seen success in reducing the number of new infections, our proportion of cases nationally has declined, resulting in the loss of Ryan White funds.
The CDC Cooperative Agreement, which supports HIV prevention, education, and support services, has seen an approximate 40% reduction. Resources to address STIs are also limited, since the federal STI cooperative agreement has declined each year since 2006.
New York State needs to take its bold vision for an end to the AIDS epidemic further. We must:
- Add a fourth point to the plan: Provide wrap-around support services to retain people in care.
- Develop models to predict the need for and cost of wrap-around services as more New Yorkers are diagnosed and linked to care.
- Target wrap-around resources along the Continuum to ensure seamless continuity of care.
- Identify the types of services that are needed and most correlated with retention in care and viral suppression.
- Identify cost savings based on different scenarios and bundling of wraparound services.
- Provide seed money to the AIDS Institute to launch innovative interventions related to:
- HIV testing using fourth-generation technologies
- Linkage to and retention in care using social media and other innovative strategies
- Social marketing campaigns for PEP and PrEP
- Training for health care providers to scale up PEP and PrEP and HIV testing
- Develop innovative partnerships with the private sector to drive uptake of PEP and PrEP.
As we move toward ending the AIDS epidemic in New York by 2025, we see more than a tale of hype versus hope or possibility versus pipe dream -- it is a cautionary tale. We need to take stock of what we've learned in 30 years of an epidemic and the necessity (not luxury) of wrap-around services. It is a tale of how our zeal and aspiration to end the epidemic must be tempered by a deliberate and disciplined public discussion of the tough and gritty fiscal decisions that must be made to end the epidemic.
Terri D. Jackson is a senior vice president at Rabin Martin.