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.