Hosted by long-time HIV activist and Housing Works president, Charles King, the 2015 Learning Institute on Advocacy discussed plans to end HIV by 2020. The full-day institute featured more in-depth presentations from conference presenters as well as fishbowl-format discussions on important goals and metrics, community mobilization, viral suppression and social drivers among key populations.
In an interview with OHTN staff, King said that his hope was that jurisdictions with commitments to end AIDS by a certain date could learn from each other through this institute, but also that people from jurisdictions who haven’t set this goal could observe, engage, and begin to consider whether similar projects would work for them.
He noted that the institute sparked debate among discussants about the use of surveillance data, but pointed out that that data helps link people to treatment sooner, improving their overall health. “I don’t even use the language of treatment as prevention,” he said, “because the number one reason I want you to go on treatment is for your own well-being, and it’s a side-effect that by doing that, you also ensure that you can’t transmit the virus to anyone else.”
Speaking on behalf of the Getting to Zero Consortium, Oliver Bacon, of the University of California, echoed Michael Kharfan’s comments about the importance of framing. “We’re not trying to ‘end AIDS’ in San Francisco,” he said. “We’ve gotten quite a fair amount of push-back from the community on that.” Instead, the consortium has set goals for zero new infections, zero deaths and zero stigma and discrimination – or a 90% reduction in those things – by 2020.
As in Washington DC, the treatment cascade in San Francisco was improving before the plan was announced. There have been fewer new diagnoses and deaths since 2006, and the city has already implemented many evidence-based interventions. After CDC released new testing recommendations in 2006, HIV testing became “essentially opt-out.” The city also abandoned CD4-guided ARV initiation and began providing ART at diagnosis in 2010, after data from the SMART study and others were released. The 2011 LINKS program enhanced linkage to care city-wide and, in 2012, San Francisco participated as one of three cities in a PrEP demonstration project that created a groundswell of support for preventative medication. In 2013, the RAPID program, which attempts to link newly-diagnosed patients to HIV care within 48 hours, was tested and is now being rolled out city-wide.
The story of Getting to Zero in San Francisco is the story of collective impact.
Getting to Zero was formed as a multisector independent consortium after epidemiological data was revealed on World AIDS Day in 2013. It represents the long-term commitment of many groups across sectors to work toward a common goal: improve life for people living with and at risk of HIV without cannibalizing existing resources. Its focus is on signature initiatives, such as the RAPID program. Bacon noted that both the city and private sector have been generous in their support.
Successes of Getting to Zero include: a robust HIV surveillance branch, tracking patterns in access to services across demographic groups; access to testing and clean drug injection equipment; the fact that 94% of people living with HIV now know their serostatus; and strong linkages to public and private health care providers.
Future goals of the project include: Increased knowledge, especially among youth, people of colour, people who use injection drugs and newcomers; increased peer support; improved access to mental health, housing and substance use services, as well as immediate ART; and reduction of stigma.
Speaking as part of the same panel, Austin Padilla, one of the founding members of the consortium, explained that research projects are currently underway in San Francisco to determine who endorses stigmatizing beliefs and how people living with HIV perceive interactions with service providers, as well as to gather community feedback on experiences with and strategies for coping with or showing resilience to stigma.
I started in NYC in 1985, working in HIV… and to see where we are right now is an incredible opportunity; an incredible chance to say that we really can change the course of this epidemic.
Michael Kharfen, of the DC Department of Health, explained that health outcomes across the cascade had already been improving before the city announced its 90-90-90-50 plan in June. Washington DC had already seen a 59% reduction in new diagnoses since 2007 and a 50% reduction in HIV mortality. With the expansion of routine testing in 2006, the estimated proportion of people living with HIV who are unaware of their diagnosis has gone from 50% to less than 5%.
Kharfen noted that the wording of the 90-90-90-50 plan, which did not have an official name at the time of the Summit, was being carefully considered so as not to send the wrong message about the project’s goals. “It’s hard to say that you’re coming up with a plan to end HIV or end AIDS when we still have thousands of people living with HIV,” he said. “It may sound like semantics but, [it’s important] to really get to the message that we are not trying to end those people who are still living with HIV, but that address that we can get to an ambitious goal of ending HIV.”
90-90-90-50 is an adaptation of the UN AIDS goals that, by the year 2020, 90% of all people living with HIV will know their HIV status, 90% of all people living with HIV will receive sustained antiretroviral therapy and 90% of all people receiving antiretroviral therapy will have viral suppression. The city has added an additional goal: a 50% reduction in new HIV cases by 2020. Kharfen noted that, while this plan is not as ambitious as getting to zero, it may be more realistic, saying, “I really believe that without a vaccine in our portfolio, to actually get to zero is going to be challenging. And therefore how do we set the right bar of expectations of what we can achieve?”
In terms of metrics, Kharfen stressed that, in his opinion, one of the most common metrics used to evaluate program success – retention in care – is not helpful. “Going to the doctor does not mean you’re being successful in your HIV treatment,” he said. Measures of adherence provide more information about whether treatment has been successful.
In terms of results, Kharfen noted that the average CD4 count at diagnosis is now 400, which is double the level reported in 2005; 86% of people diagnosed with HIV are now linked to care, and 60% of those in care have achieved viral suppression. Among 7,000 participants in a longitudinal cohort study funded by NIH, viral suppression has reached 80%. One million dollars of local funding has also been committed to scale-up PrEP access in Washington DC.
While Kharfen acknowledged that he had doubts about this project at the outset, he’s embraced it now because he thinks it will motivate the community to take the last steps to address HIV.
British Columbia’s STOP HIV/AIDS program was launched in 2010 as a four-year pilot in Prince George and Vancouver and expanded in 2013 to include the whole province.
Gina McGowan, of the British Columbia Ministry of Health, explained that, as of 2007, British Columbia had the highest rate of new HIV infections in Canada, concentrated among Indigenous people, people who inject drugs, men who have sex with men and people who have immigrated from countries where HIV is endemic. Mortality rates were highest in Prince George and the downtown east side of Vancouver.
By 2009, mathematical modelling had demonstrated the potential cost effectiveness of treatment as prevention, and there was support to develop innovative approaches to testing and linkage to care. The STOP HIV/AIDS pilot was given $48 million in new funding and made data-driven decisions to invest those funds in the introduction of routine HIV tests in primary care settings, outreach teams, online technologies, a peer navigation program, wrap around nursing and pharmacy care.
Successful initiatives from the pilot program became part of the From Hope to Health strategic policy, which includes collaboratively-developed goals, milestones and three-year targets for the province. The province has also invested an additional $19 million to implement lessons learned from the pilot project across the province and introduced annual public reporting on the project’s progress.
The goals of the STOP HIV/AIDS project and strategy include ensuring consistent testing and care, increasing testing, diagnosing people earlier, and having 90% of those who are willing and eligible on antiretroviral treatment. Thus far, the program has shown an increase in testing and diagnosis, an increase in the proportion of people diagnosed with HIV who are on treatment, an increase in testing for HCV and syphilis, and a decrease in the number of people living with a detectable viral load.
McGowan explained that the health care situation in Canada, and particularly in BC, is different from that in much of the United States. In British Columbia, the Medical Services Plan covers the full cost of medically-provided services for anyone who earns less than $22,000 annually and the BC PharmaCare program provides free HIV medication to anyone who needs it.
Challenges that remain include: changing the culture in HIV testing away from risk-based testing, stigma in First Nations communities, concerns about confidentiality, and barriers to care in rural and remote areas. McGowan also noted that, compared to other groups, youth and women not seen the same improvements across the cascade, and that federal drug regulations create challenges in expanding supervised consumption services.
STOP HIV/AIDS initiative website
From Hope to Health: Toward an AIDS-free Generation
Gina McGowan’s slides
In June 2014, Governor Andrew Cuomo announced a three-point plan to end AIDS in New York:
- Identify persons with HIV who remain undiagnosed and link them to health care
- Link and retain persons diagnosed with HIV in health care to maximize virus suppression so they remain healthy and prevent further transmission
- Facilitate access to Pre-Exposure Prophylaxis (PrEP) for high-risk persons to keep them HIV negative.
Speaking at the Summit, Johanne Morne, of the New York State Department of Health AIDS Institute, explained that community engagement was a key pillar of the strategy. “It was community leadership, community mobilization, innovation and absolutely no fear that started this discussion,” she said, noting that the strategy is the continuation of over thirty years of work in the HIV sector.
In the wake of Governor Cuomo’s announcement, New York assembled a task force of 63 key stakeholders, co-chaired by Housing Works President and CEO Charles King. The task force reviewed over three hundred recommendations from the community along with other information to develop a blueprint containing 30 recommendations related to the three-point plan and an additional seven recommendations for “Getting to Zero” (i.e. zero new HIV infections, zero discrimination, zero AIDS-related deaths). The final blueprint was released publically in April 2015.
To ensure implementation of the blueprint, the state created a 16-member AIDS Advisory Council and a public dashboard that allows the community to see how effective the strategy has been.
Morne emphasized that the task force understands that reaching a target number does not, in itself, mean the epidemic has ended, especially if remaining infections and loss to care are concentrated among members of one community or demographic. Even so, the state has been able to show key achievements since implementing the plan, including a 40% reduction in new HIV cases over the past 10 years, a 79% reduction in new AIDS diagnoses, reduction in mother-to-child transmission and reduction in new diagnoses attributed to injection drug use.
Investing in Supportive Services
According to Peggy Bailey, of the Corporation for Supportive Housing (CSH), supportive housing is a healthcare intervention that should be paid for in the same way as hospital stays and nursing homes. While supportive housing is for people with significant needs, affordable housing is also aimed at those who often need light supportive services.
“If we want to create more affordable housing,” Bailey said, “we need to bring more voices to the table demanding affordable housing, and the health care system is beginning to see their role in that space.”
Bailey explained that services funding comes from a wide variety of sources and is unpredictable because it’s based on the budgetary circumstances of the moment. Funding can also be uncoordinated because reporting standards and the way funds are earmarked and divided can create an extensive administrative burden.
It’s that services component that is the secret sauce that makes supportive housing work.
While Medicaid has been used for clinical services in the past, decision-makers are starting to understand that softer support services are essential to achieve better outcomes. CSH has started to look for opportunities to ensure supportive services have long-term funding under Medicaid expansion.
A recent informational bulletin from the Centers for Medicare and Medicaid services clarified that there are greater opportunities to fund long-term care and supportive services, and some states are proposing changes to their own Medicaid plans. For example, Texas has a 1115 waiver to experiment with regional networks providing housing support, California has a 1115 waiver for managed care and Louisiana is distributing housing dollars alongside service dollars as part of a package.
Bailey also identified opportunities in the Health Homes network model, which New York, Minnesota and Oregon have used to leverage better supportive housing. CSH also continues to work on managed care by encouraging supportive housing providers to form relationships with other community providers to avoid duplication of services.
Health Policies to Support Food as Medicine
During her presentation on food security, Karen Pearl discussed opportunities to provide food services through the Ryan White program and the Affordable Care Act.
When Ryan White was reauthorized in 2006, service providers successfully pushed for a new clause specifying that food and nutrition can be considered core medical services. Pearl explained that, as Medicaid expansion and the Affordable Care Act begin to pay for more medical services for people living with HIV, there is now an opportunity to reinvest Ryan White funds into structural inventions such as food and nutrition services.
Pearl’s organization, God’s Love We Deliver, has been reimbursed by health care companies for delivering 230,000 meals a year through a New York state waiver to Medicaid. She emphasized that this was a voluntary choice on the part of health care companies, and that they had elected to cover food and nutrition services because it helped them meet their goals.
Pearl emphasized that there is a high level of variation in the coverage people receive through the Affordable Care Act. There is still work to be done to ensure that the standard of care set out by the Ryan White CARE Act, including access to food and nutrition services, is available to all people living with HIV.
Redesigning HIV Care in British Columbia
Miranda Compton, of Vancouver Costal Health, explained the process used to develop the Vancouver STOP HIV initiative. This pilot program, begun in 2010, uses a treatment as prevention approach. In British Columbia, residents have universal access to antiretroviral treatment and no direct barriers to care, which means other factors are interfering with treatment.
The program invested $20,000,000 over three years in expanding capacity, developing new partnerships and funding new initiatives (initiatives were evaluated every six months and either renewed or changed). The first two years focused on developing activities to reach people who were not suppressed and not engaged with HIV services. This included expanding point of care testing and developing a peer navigator program, treatment adherence programs, drop-in programs and housing programs – which, Compton explained, were supported by research presented at previous Summits. Housing programs, specifically, were associated with dramatic decreases in viral load within six months.
This STOP project is making our lives a living hell.
Follow-up with service providers revealed that their workloads had increased and that they were seeing clients with more complex needs. While this was positive in that the STOP HIV initiative was reaching its target client base, it was also overwhelming for service providers. The takeaway message was that adding money to the system of care wouldn’t be a magic bullet; the province had to look at the whole health care system from the ground up.
The project team decided to map everything they wanted in a system of care and then figure out how to turn those pieces into a continuum of care that included an integrated service delivery system for prevention, testing, care and treatment. Since then, Compton explained, the program has been expanded and granted continuing funding.
Contracts with AIDS service organizations have been redefined based on the new HIV care model. A random sample of clients leaving intensive case management revealed that, while only 39% were virally suppressed at intake, 67% were suppressed at discharge and 79% were suppressed six months after discharge. Of 134 clients who received housing services, 30% were virally suppressed at intake and 70% were suppressed at the group’s most recent measure.
The initiative’s next challenge is to integrate more effectively with mental health and addictions services.
Redesigning State Medicaid in New York
Meghan Gleason, Director of Government Health Care Transformation at KPMG, outlined New York state’s approach to redesigning its Medicaid system. With a budget of sixty billion dollars each year, New York’s Medicaid system is the second largest in the United States and, in 2010, Governor Andrew Cuomo developed a multi-year plan to refine it.
Key components of the plan include a global spending cap and capped spending on Medicaid, which increases by only 2% each year. The state can innovate as long as total spending stays under the cap, and there is a requirement that 1115 Medicaid waivers be budget-neutral.
Gleason reported that Medicaid redesign has led to seventeen billion dollars in savings, and that New York was able to broker a deal that would allow it to reinvest eight billion dollars of that money back into state health care through the Delivery System Reform Incentive Payment (DSRIP) Program, putting the state on the forefront of transformation.
The aim of the DSRIP program is to change the healthcare delivery system through creating Performing Provider Systems (PPS): large networks of providers who are jointly responsible for a set of Medicaid beneficiaries. There are 25 PPS networks in the state, and each did a community needs assessment to create an implementation plan, projects and strategies.
The state’s plan also included a large investment in infrastructure to sustain new initiatives after the DSRIP funding ends. “If you don’t also fundamentally change the way that you pay for healthcare,” Gleason explained, “at the end of 5 years when the [funding] goes away, everything sort of just reverts back to the way it was before.” New York’s strategy is to create a delivery and payment system as two sides of the same coin, so that incentives align once DSRIP is finished.
One of the methods the state has used to do this is the introduction of value-based payment. In the past, moving to value-based payment was a threatening proposition because it would have meant less funding for providers. The introduction of a global cap means that spending stays flat even in the event of savings, so that savings will be reinvested in the system. Gleason emphasized that this is only possible because the move to value-based payment is not, in itself, intended as a cost-containment measure.
Gleason outlined the levels of value-based payment developed in New York, explaining that service providers who opt into higher levels experience more freedom in how to spend their Medicaid funding, but they also carry more risk. In one example, a service provider decided to spend Medicaid funding on air conditioning for elderly patients to reduce emergency room visits in the summer. Gleason noted that funding could also be used for supportive housing based on the same principle.
Practice Learning Institute on Housing Interventions to Improve the Continuum of Care
Sponsored by the US Department of Housing and Urban Development (HUD), this full-day learning institute focused on the connection between stable housing and improved outcomes along the HIV care continuum. The session featured a mixture of guided discussion and strategic planning sessions to help participants develop community strategies to improve and measure client health outcomes, create strategic partnerships and use local data to demonstrate the link between health and housing.
Through the process of designing an HIV Housing Care Continuum, participants were able to identify new opportunities for collaboration as well as develop a powerful advocacy tool to support cross-system dialogue on HIV.
In an interview with OHTN staff, Russell Bennett explained that, when housing interventions are introduced, “we see remarkable changes across the continuum… so, if … through this institute [we can] help communities build their own HIV Housing Care Continuums we think we can help enhance the system of care and also begin to bring together disparate systems.”
Building Housing, Health and Other Partnerships for Client-Centred Care
Breaking barriers, creating access, nurturing recovery
Eleshia Fahy, Coordinator, McEwan Housing and Support Services/Loft Community Services
The Positive Service Coordination Program based at LOFT Community Services in Toronto provides short- and medium-term intensive case management for people living with HIV who cycle through the health and judicial systems as a result of being homeless, living with a mental illness, using substances and/or experiencing a physical or mental health crisis. The program is supported and guided by the Advisory Committee, comprised of our membership/clients. Case managers work with members and community partners in collaboration with 17 cross-sectoral agencies to: find permanent, stable housing; ensure members have appropriate identification documents and are receiving their maximum social assistance benefit; engage members in HIV-specific care, primary care and mental health care; and make active linkages to appropriate community organizations. The slides describe the program and discuss partnerships, access to primary care providers, member involvement and other issues.
HIV Addiction Supportive Housing (ASH): Successes of a Housing First model within a continuum of care
Kay Roesslein, Program Director, McEwan Housing and Support Services/Loft Community Services and Michael Blair, Director of Residential Programs, Fife House Foundation
The HIV Addiction Supportive Housing Program was developed to address gaps in service for homeless people living with HIV in Toronto experiencing health, mental health and severe substance use challenges, and cycling in and out of hospitals, prisons and withdrawal management units. The program aims to: 1) increase the health and social outcomes of people living with HIV who have problematic substance use issues and frequent emergency room and hospitalizations, and 2) increase access to and the quality of care and support services for people living with HIV who have problematic substance use issues. The slides highlight lessons and key recommendations learned from implementing the program.
Lessons learned and recommendations from the implementation of a multi-agency cross-sector collaboration addressing the needs of people living with HIV experiencing aging-related illnesses, accelerated aging, complex care and cognition issues
Michael Blair, Director of Residential Programs, Fife House Foundation
The HIV/AIDS Complex Care Pilot Project (CCPP) is a multi-agency pilot project aimed at increasing cross-sector collaboration and partnerships that address gaps in the service, care and support needs of people living with HIV who are experiencing aging related illnesses, accelerated aging, complex care and cognition issues. Ten separate partner agencies offered coordinated wraparound clinical and community support services, and a new high-support housing model. The slides outline some of the lessons learned and recommendations about implementing a collaborative project. Key recommendations include: the leadership of a “backbone organization” that can provide the structure and guidance for the development of the partnership; taking an improvement approach by continuously monitoring for challenges and conducting an ongoing review of implementation; and creating space and time for the interdisciplinary care team to articulate goals, tasks, roles, leadership, decision-making, communication, conflict resolution, role definitions and scope.
Translating research data into new funding opportunities: “Cashing in on the value of an AIDS or supportive housing unit”
Arturo Bendixen, Executive Director, AIDS Foundation of Chicago
A group of AIDS and supportive housing providers in Chicago and Cook County organized themselves into a collaborative representing almost 80% of all funded units in the area. From this position of strength and value, the collaborative, now named Better Health Through Housing (BHH), is engaging and negotiating with managed and accountable care organizations administering Medicaid funds in Illinois. Using published research data, as well as recently acquired Medicaid claims data of homeless individuals who are high users of health care services, BHH has negotiated for health dollars to help complement HUD and HOPWA funds for housing the homeless. As the value of an AIDS or supportive housing unit is recognized by health care payers, and as the demand continues to be greater than the available supply of existing units (mostly paid for by HUD and HOPWA dollars) health care payers are becoming an important funding source for units especially serving high users.
Integrating for impact: The origins and practice of the Structural Interventions Working Group of the Federal AIDS Policy Partnership
Suraj Madoori, Manager, HIV Prevention Justice Alliance, AIDS Foundation Chicago
In 2014, the head of the National AIDS Housing Coalition and the Federal AIDS Policy Partnership’s (FAPP) Housing Working Group, Nancy Bernstein, recognized that, in order to address the needs of people living with HIV, advocacy efforts would need to incorporate more than just housing. Working with other advocacy leaders, she expanded the FAPP working group to create the Structural Interventions (SI) Working Group. The slides examine the genesis of SI, and the lessons and best practices learned over the last year. They highlight the merits of combined advocacy efforts, the implications of integration at the local, state and federal level, and the challenges of being in a mixed coalition (e.g. messaging to internal and external constituencies, rallying support from Boards of Directors, shared decision making).
Opportunities in the Affordable Care Act
Carmel Shachar, of Harvard Law School, examined the implications of the Affordable Care Act on health insurance for people living with HIV in the United States. Shachar explained that, before the Affordable Care Act, very few people living with HIV had insurance through their employers, which is the primary way Americans pay for health care. Medicaid, which provides supplemental care for people with low incomes, was constructed on a disability model, which made it less useful for preventive services. While the Ryan White program provides good support for people living with HIV, its funding is discretionary and hasn’t increased at the same rate as the numbers of people who need care. The result was that, prior to the Affordable Care Act, over 50% of people living with HIV and 75% of people with hepatitis C were not in regular care.
Let’s advocate to expand Medicaid in our state even if it has to be done through a premium assistance program.
Since the introduction of the Affordable Care Act, 68,000 people living with HIV have been newly insured, mostly through federal subsidies and Medicaid expansion. Shachar noted that Medicaid has not been expanded in all states and that, in states that retained the original version of Medicaid, people are “falling into this new donut hole where they’re ‘too rich’ for regular Medicaid but they’re ‘too poor’ to receive subsidies.”
Although the Affordable Care Act originally required states to expand Medicaid, a later Supreme Court ruling allowed states to keep the Medicaid programs they had in place. Medicaid expansion eliminates the disability requirement for those whose annual income is up to 138% of the federal poverty level (approximately $15,000/yr for an individual). Under the terms of the Affordable Care Act, the federal government will pay 100% of the cost for Medicaid expansion up to 2016, and 90% of the cost thereafter, significantly reducing the burden on states. Even so, only 31 states had expanded Medicaid at the time of her presentation.
HIV is exactly the kind of chronic serious condition that, when managed well and managed carefully, can be something people can live with for years … and have really different outcomes than when they’re receiving spotty care because their insurance isn’t sufficient or they’re uninsured.
Additional barriers to accessing insurance include refusal to cover certain drug formulations, cost-sharing structures that push the cost of care onto the enrollee and transparency issues in which either documents explaining plan coverage are not available to enrollees or drug formularies change during the enrollment period, leaving enrollees on a plan that no longer covers their medication.
Shachar explained that HIV medications are generally placed on the highest cost-sharing tiers, which can lead enrolees to spend as much as $3,000 more each year – a large amount for low-income families. In an analysis of plans offered in five southern states, 54% of plans required a co-pay of 30% or more, 63% of plans placed half the available HIV medications in the highest cost-sharing tier and 93% of plans charged 30% of enrollees’ median annual discretionary incomes for Atripla.
Shachar strongly recommended Medicaid expansion as a way to reach people newly infected or at risk for HIV, relieve pressure on safety net providers and contribute to timely access to care and care coordination. In the absence of expanding Medicaid, Shachar argued for the importance of providing free preventive services to people on regular Medicaid, noting that the 1% federal matching rate has so far not been a strong enough incentive for states to provide preventive services.
Finally, Shachar explained that the Affordable Care Act opens avenues for states to establish Health Homes for people living with HIV and that those who have done so – including New York – have seen success.
Improving Linkage to Care in San Francisco
Oliver Bacon, of the University of California, discussed San Francisco’s Rapid ART Program Initiative for HIV Diagnoses (RAPID). One of several initiatives from the Getting to Zero Consortium, RAPID aimed to reach 80% of people newly diagnosed with HIV by December 2016 and ensure that, within 48 hours of diagnosis, patients are linked to counselling, receive a baseline medical evaluation and are offered antiretroviral therapy, regardless of their ability to pay.
Bacon explained that RAPID’s objectives are made possible through care navigation and insurance, and that a city-wide RAPID protocol was being distributed to providers in anticipation of expansion. Based on results from an initial pilot study, time to viral load suppression was halved in areas where RAPID was in place. Surveys also found that the program was highly acceptable to patients.
Housing Interventions in Uganda
Dorothy Baziwe, of Shelter and Settlements Alternatives: Uganda Human Settlements Network, joined the Summit to discuss work the Network has been doing in Uganda.
“Our figures, according to UN AIDS, show that we’re doing good work,” she said. “However, us in Uganda, we have queries about that good work that we’re being reported to have done.” Baziwe explained that although studies report that 99% of Ugandans know HIV/AIDS exists, asking deeper questions reveals a comprehension level closer to 43% as well as issues of stigma, nondisclosure and criminalization.
Baziwe’s organization undertook an action research study, which revealed rampant evictions of people living with HIV, who lacked knowledge of where to seek legal recourse. Business owners who were evicted were highly stigmatized by their customers, people living with HIV were unable to save for decent housing due to high treatment costs and access to public toilets was expensive due to stigma. Overcrowding and inadequate ventilation posed health risks and home-based health care services were difficult: floods, poor sanitation and poor waste disposal created environments health workers did not want to enter. Baziwe noted that storage of medication was also inadequate in many cases.
In a separate study, researchers found that the negative behavior of landlords had a strong impact on the psychological well-being of people living with HIV and that women, who were the most vulnerable, displayed high stress in the face of eviction.
Baziwe outlined interventions the Network had engaged in, including income generation activities to improve sustainability, community clean-up campaigns, development of national eviction and resettlement guidelines and paralegal training for communities.
Data Modelling to Estimate the Impact of Housing Interventions
Brandon Marshall, of Brown University, explained how data modelling can be used to simulate and estimate the impact of homelessness interventions. Marshall’s team used data from a British Columbia cohort of 700 people living with HIV who use drugs to model the effects of a hypothetical intervention.
Participants were predominantly white, middle-aged men with a history of drug use: 30% had some exposure to homelessness, 40% had been on methadone within the past six months and 30% were virally suppressed. Results of the data modelling showed that, if homelessness could be removed from this population, there would be a 15% relative increase in viral suppression overall and an 88% relative increase in viral suppression among people who were homeless at the time of the intervention. Marshall explained that the effect would be even greater among populations with higher rates of homelessness.
A Team of Superheroes to Increase Viral Suppression in New York
TJ Ghose, of the University of Pennsylvania, explained the Undetectables project, created by Housing Works to help address New York’s goal of ending the HIV epidemic by 2020. The project’s goal is for 80% of participants to achieve viral suppression – as of the Summit, 610 participants who received services at Housing Works had been enrolled, and the project had an 80% retention rate.
The Undetectables team developed a toolkit, including social marketing and a comic book, to raise the project’s profile and increase audience buy-in. Their strategy was to link case managers to a team of primary care providers and make viral load suppression the central objective of that team. Ghose explained that one of the most talked-about features of the project is that it provides financial incentives to participants to maintain an undetectable viral load: $100 for each quarterly set of lab results.
The Undetectables project is staggered so that more resources are directed to participants who experience greater difficulty reaching and maintaining an undetectable viral load. For the 20% of participants who are not undetectable after the initial intervention, the program provides cognitive behavioral therapy, motivational interviewing and peer counselling. At the next level, interventions include pill boxing and text message reminders and, at the last level, interventions include directly observed therapy. Ghose noted that, by progressing through interventions in this sequence, the model reserves the most expensive and intensive interventions for the smallest number of people.
At the time of his Summit presentation, Ghose was able to report that there had been an increase in viral suppression among participants, with up to 85% virally suppressed. Ongoing evaluation, staff surveys, focus groups and case meetings were also underway to keep the program on track.
- Undetectables Website
- Positive Lite Interviews Michael Clarke and Juan Astasio about the Undetectables
Transitional and Supportive Housing at Housing Works
Stephen Nolde, of Housing Works, described some of the housing supports available through his organization. Housing Works offers transitional and permanent housing, which includes a program for women who were formerly incarcerated. Viral suppression rates among clients range from 80-95%. Monthly apartment inspections have been a successful intervention, in that clients are able to interact with a care team during these visits, talk about their health and ask questions.
During a Q&A session, Nolde clarified that residents have the right to refuse the care team entry to their homes, but that the majority have found the visits helpful.
Interventions for Person-Centered Care
The Cedar Project WelTel mHealth Study: A text message intervention for HIV prevention and treatment among young Indigenous people who use illicit drugs – successes and challenges to date
Kate Jongbloed, School of Population and Public Health, University of British Columbia
The Cedar Project WelTel mHealth study was initiated in September 2014 to explore whether a culturally-safe two-way supportive text message intervention in a community-based setting has the potential to support HIV prevention and treatment among 150 young Indigenous people who use drugs. Participants receive a package of supports, including a mobile phone and long-distance plan, weekly two-way supportive text messaging and support from Cedar Advocates. Preliminary results suggest that participants use study phones to connect with: family and loved ones, housing, work opportunities and services. Weekly “how’s it going?” texts to each participant allow them to set their own goals and priorities for support from Cedar Advocates. The project has received diverse requests, including help to navigate access to addictions treatment, counseling, housing and cultural supports. Slides highlight preliminary findings, successes and challenges in implementing the Cedar Project WelTel mHealth program.
A multidisciplinary approach to engagement in care of HIV-infected individuals with unstable housing and HIV infection risk in homeless participants in community popup clinics
Syune Hakobyan, Vancouver Infectious Diseases Research and Care Centre Society
Ongoing improvements in antiretroviral treatment have transformed HIV into a chronic, manageable condition, but this benefit may be mitigated in vulnerable individuals with unstable housing. There are insufficient data in the medical literature to quantify this association. People living with HIV included in our analysis consisted of individuals who have been attending an inner city clinic on a regular basis for management of their HIV since 2013. Since May 2013, 430 PLHIV were stably engaged in care at the clinic and receiving medical and other multidisciplinary care. In total, 52 (12.1%) of PLHIV were homeless or precariously housed. Among the people who had unstable housing, 51 were on ARV and 30 had undetectable HIV plasma viral load measures, while 11 had virologic ‘blips’ with 10 others having less favorable virologic responses. Immunologic responses in the homeless/precariously housed were good, with a documented increase in median CD4 count from 420 to 520 cells/mm3. Despite multiple competing social and medical issues, people living with HIV with many vulnerabilities and housing instability can be engaged in health care and manage HIV and HCV infections.
Unstable housing is mediated by social support leading to reductions in health-related quality of life among former or current injection drug users on ART in Baltimore, Maryland
Sarina Isenberg, Department of Health, Behavior and Society, Johns Hopkins Bloomberg School of Public Health
Housing stability likely has an effect on the health-related quality of life (HRQoL) of persons living with HIV who are low-income, urban, former or current drug users and primarily African American, living in Baltimore, Maryland. This study used structural equation modelling to understand the role of social factors in HRQoL. Researchers hypothesized that housing instability is associated with a decreased HRQoL among former or current injection drug users on ART. Data were from the baseline data of the BEACON (Being Active and Connected) study, an observational study with assessments at three points in time, which examined social environmental factors associated with health outcomes and well-being among disadvantaged people living with HIV and their informal caregivers (N = 258 dyads). While having stable housing was not directly associated with HRQoL, it had a direct effect on having supportive network members and caregiving cessation risk.
Moving in, moving up and moving forward: Developing an assessment tool to identify potential graduates from permanent supportive housing programs serving persons with disabilities
Andrew Timleck, AIRS/Empire Homes of Maryland
In 2010 the Federal Strategic Plan to Prevent and End Homelessness (HEARTH Act) proposed that “graduation” programs – programs that would help people who have achieved stability and want to leave PSH transition to independent living – be one of the strategies that cities use to free up units to house those who need housing most. Researchers assessed a number of non-profit organizations and city governments that are pioneering assessment tools for “graduation programs” under the rubric of “Moving In, Moving Up, and Moving Forward.” Findings describe commonalities and differences in those assessment tools, how practical they are to employ, their pitfalls and promises, and what kinds of resources and barriers might present during their deployment. Researchers tested some factors with Baltimore’s HMIS data and saw some expected and unexpected success markers. They compiled the existing tools to develop a more universal assessment tool for program staff to use to identity those best suited to participate in a graduation program. They also explored why participants choose to participate, what factors motivated them and who, ultimately, appeared to be successful and “moved on.” Slides describe the tool and discuss the need to incorporate “graduation” into our rubric of care.
eLearning Toolkit: Caring for individuals with complex health and social needs
Barbara Ross, Provincial Harm Reduction Supervisor, Alberta Health Services and Floyd Visser, Executive Director, SHARP Foundation
The goal of the eLearning Toolkit is to provide frontline workers with the information they need to better understand, empathize with and care for individuals/patients with complex health and social needs. The Toolkit covers topics including stigma, harm reduction, health issues (physical, mental, social, and emotional), assessment and additional resources. Toolkit project development was guided by a community planning committee with support from subject-matter experts (i.e. health professionals, behavioural specialists, community members, clients). Focus groups with a variety of community and public service providers were held to gain feedback on the ease of using the eLearning Toolkit and the relevance of the content to their work. Community consultations are now resulting in ideas for additional modules and resources to be included in the Toolkit. Slides discuss the pros and cons of using this type of learning model for diverse service groups and its applicability to services that extend beyond housing and supports.
Methodologies Learning Institute on Program Science
REACH 2.0 and the Ontario HIV Treatment Network were pleased to host a full-day learning institute on program science (also known as implementation science). Speakers discussed key methodological approaches to support program science related to the social and structural drivers of HIV, including discussion of quantitative as well as social science methods. The session ended with small group discussions on how to advance the field.
Chris Beyrer, of the International AIDS Society and Johns Hopkins University, delivered a keynote presentation on interventions to address HIV among key populations in the United States.
Beyrer began by pointing out that, world-wide, 37,000,000 people are living with HIV and only 37-38% are on antiretroviral therapy. At the time of his presentation, only three countries – the United States, Thailand and Malaysia – had implemented PrEP, and none had done so through national health systems.
Just ahead of the Summit, Kaiser Permanente released data from a longitudinal study of 650 people living in San Francisco who had been prescribed PrEP, among whom there were zero new infections. “This is a tool that has the potential to make a difference,” Beyrer said. However, he noted that only a select group of people could afford the insurance plan study participants were on.
During a Q&A session after his presentation, Beyrer added that Truvada has so far shown side-effects related to bone density and kidney function, and that people considering PrEP need to be screened and monitored for potential complications. For people who already have HIV, mistakenly taking PrEP can lead to drug resistance. Beyrer emphasized the need to run extremely sensitive HIV tests before prescribing PrEP, and explained that this is a barrier to introducing PrEP in low-income settings.
What key populations are… for example, 70% of new infections in the United States. This is the epidemic. There isn’t some other epidemic.
Throughout his presentation, Beyrer emphasized the need to focus on strategies to help key populations who make up the bulk of new HIV diagnoses.
Beyrer cited data from the ATN 110 study, which examined PrEP use among young trans women and men who have sex with men. Researchers measured PrEP adherence through blood levels over a 12-month period and found that black participants were less successful in maintaining protective levels of the drug – which would require at least four doses per week. Further research is needed to determine how PrEP can be a more effective intervention for young black men who have sex with men.
The same study also found that 17% of participants had been expelled from their homes due to their sexual orientation or gender identity. During the Q&A, Beyrer emphasized that stigma around sexual orientation is also a problem in many countries where HIV is endemic – only a handful of African countries have decriminalized homosexuality and nine still carry the death penalty, which discourages people from seeking care.
Beyrer explained that, compared to women in the general population, female sex workers have an elevated risk for HIV, and that studies – including those by fellow Summit presenter Kate Shannon – have shown that decriminalization of sex work is one of the most effective ways to reduce new HIV infections. Beyrer provided examples of the negative impact that criminalization has on sex workers’ safety, including the fact that, in some jurisdictions, carrying condoms is used as evidence to charge someone with solicitation.
Beyrer also highlighted the challenges faced by trans women. Based on data from the only 15 countries reporting on trans populations, trans women are 30-50 times more likely to have HIV. The trans community would benefit from being able to access legally-appropriate identity documents and more research is needed on the interactions between PrEP and hormone replacement therapy.
- Huffington Post Coverage of the Raid on Rentboy.com
- Kaiser Permanente Announces the Results of its PrEP Study
- Report on the ATN 110 Study
Summit organizers were pleased to host a full-day learning institute on redefining integrated health services, sponsored by the MAC AIDS Fund. Panelists included senior executives of several frontline agencies in the United States and Canada, who discussed strategies, tools and alliances to influence policy makers and persuade health systems to establish models of health care that include sustainable sources of funding for housing and other social drivers of health.
The day ended with an action planning session in which participants discussed how to move forward on integrating housing and other social determinants into their local HIV strategies.