Examining the Correlation Between Housing Status and Treatment Adherence Among HIV Positive Clients in Delaware

Examining the Correlation Between Housing Status and Treatment Adherence Among HIV Positive Clients in Delaware Written and Developed by the Delaware HIV Consortium (December 2012) Summary: Many People Living with HIV/AIDS (PLWHA) experience the effects of poverty, stigma and illness. National research identifies housing as the greatest unmet need of PLWHA. Studies demonstrate that PLWHA who are non-permanently housed are more likely to have lower CD4+ Counts, higher Viral Load Counts, less adherence to antiretroviral therapy, and greater use of emergency rooms and inpatient hospitalization. Affordable, safe, stable housing can mitigate these effects. Both the State of Delaware and President Obama s 2010 National HIV/AIDS Strategy recognize the important correlation between housing status and HIV-related health outcomes. In 2013, the Delaware HIV Consortium utilized a report from CAREWare, a data collection system employed by Delaware s Division of Public Health, to collect information from all PLWHA who were engaged in HIV/AIDS medical care in Delaware in 2012 to compare the medical care adherence of Clients by housing status. Based on the results of this study, the Delaware HIV Consortium plans to continue our current efforts as well increase our advocacy for funding for HIV/AIDS-specific housing programs. Background: Many People Living with HIV/AIDS (PLWHA) experience the effects of poverty, stigma and illness. Affordable, safe, stable housing can mitigate these effects. Thanks to improved HIV drug therapies and health care that has significantly reduced the number of AIDS-related deaths, many individuals with HIV are living longer lives, creating an ongoing need for permanent, independent, community-based housing options for this population. According to the National AIDS Housing Coalition, 50% of PLWHA will require some sort of housing assistance over the course of their lives. For PLWHA, housing serves as a base of support from which individuals can access health care, adhere to treatment regimens, avoid costly hospitalizations, reduce HIV risk behaviors, and connect to needed care and supportive services. National research identifies housing as the greatest unmet need of PLWHA. Cumulative research presented annually at a series of national HIV/AIDS housing summits from 2007-2010 showed a strong and consistent evidence base [which] identifies housing status as a key structural factor influencing HIV vulnerability, risk, and health outcomes and that receipt of housing assistance has an independent, direct impact on receipt of HIV care, health status, and mortality among homeless and unstably housed people living with HIV/AIDS (North American Housing and HIV/AIDS Research Summit V, 2011). PLWHA who are homeless are less likely to attend outpatient HIV medical care appointments, and more likely to utilize emergency rooms and have an inpatient hospitalization within a six to twelve month period (Gordon et al., 2006; Kidder et al., 2007). In addition, PLWHA who are homeless are less likely to be prescribed antiretroviral therapy (ARV), less likely to remain adherent to ARV therapy, and more likely to cease ARV therapy altogether (Gordon et al., 2006; Kidder et al., 2007; Schwarz et al., 2009). They are more likely to have a CD4+ count of less than 200 and a higher

Viral Load Count, as well as less likely to have an undetectable Viral Load, report decreased use of medical care, and have increased mortality rates as compared to housed individuals (Kidder et al., 2007; Schwarz et al., 2009; Wolitski et al., 2010). Substance use, serious mental illness, and inadequate use of health care also negatively impact ARV use and adherence. Studies have demonstrated that the provision of housing assistance in both single service models of care and as a part of multi-service models of care increases one s likelihood of entry into, and retention in HIV medical care, as well as retention in appropriate HIV medical care and engagement in non-hiv related medical care (Buchanan et al., 2009; Messeri et al.,2002; Scott et al., 2002). Housing assistance, and in particular supportive housing which includes social service case management, drug treatment services, and mental health services improves survival rates, increases one s CD4+ count, lowers one s Viral Load Count, and can lead to decreased substance use (Aidala et al., 2007; Buchanan et al., 2009; Schwarz et al., 2009; Wolitski et al., 2010). In short, stable housing is an effective structural intervention for PLWHA that links persons to care, improves health outcomes, prevents new infections, reduces mortality and avoids costly emergency medical care. Housing assistance also leads to a reduction in health disparities by addressing other vulnerabilities in addition to HIV/AIDS, such as gender, race, poverty, mental health, substance use, and homelessness (Buchanan et al., 2009; North American Housing and HIV/AIDS Research Summit VI, 2011). Local research provides further evidence of the important role that housing plays in the lives of PLWHA. In 2006, the Delaware HIV Consortium s Planning Council conducted a consumer survey as part of the 2010-2014 Comprehensive Planning Process. Survey results indicated that affordable housing was the greatest supportive service need, outside of medical care, for PLWHA. In response to the overwhelming HIV/AIDS epidemic in Delaware and the resultant need for effective HIV/AIDS treatment and prevention services, the Delaware HIV Consortium has operated a statewide rental assistance program for the past 14 years. Program beneficiaries are low-income persons living with HIV/AIDS who are in need of affordable rental housing. Program operations are coordinated with HIV/AIDS medical case managers from several agencies at numerous locations throughout Delaware. These case managers provide referrals to the program and link clients to a wide range of treatment and supportive services available to them. In 2011, the Delaware HIV Consortium surveyed all clients receiving housing assistance from the agency s rental assistance program. The results of this survey showed that 62% of housing clients had been homeless before entering the program and 79% said they would be homeless or at risk of homelessness if they were no longer receiving rental assistance. An overwhelming majority of program participants, 97%, said that their subsidized housing helps them better manage their health care. Yet, a persistent challenge is the unpredictability of funding for Delaware s housing program. The state s Housing Opportunities for People with AIDS (HOPWA) allocation has decreased or remained level for the past several years, although housing expenses have increased significantly, primarily due to rising rent and utility costs. Another ongoing challenge is the low attrition rate off the program that is primarily due to the

limited number of affordable housing choices available to the Delaware HIV Consortium s clients. The initial intent of the Delaware HIV Consortium s program was to assist clients for a limited term until they received a housing subsidy from a non-hiv specific housing provider, such as a housing choice voucher or public housing. The fact is that our state s five public housing authorities have long waiting lists for their subsidized housing programs that are not easily accessed. It is not unusual for eligible persons to wait several years for the opportunity to apply for subsidized housing, only to be placed on a waiting list for an additional multi-year timeframe, anywhere from five to eight years. Today, the demand for subsidized housing programs has been exacerbated by the nation s economic downturn. Local Public Housing Authority programs in New Castle County, where 70% of the Delaware HIV Consortium s clients live, have the longest waiting lists. Persons wishing to apply must wait until the list is open to new applicants. The opportunity to apply when the list is open is restricted to a very short timeframe, oftentimes a two-day call center that is frustrating, if not impossible, to access. In addition, many of our clients do not qualify for other types of subsidized housing due to poor credit and criminal histories. The State of Delaware recognizes the important correlation between housing status and HIV-related health outcomes. In May 2009, Delaware became the first state in the country to unanimously pass a bipartisan housing resolution, Senate Concurrent Resolution No. 16, which states that, ensuring the availability of adequate housing is an essential component of an effective strategy for prevention and treatment of HIV and the care of individuals with HIV (Senate Concurrent Resolution No. 16, 2009). In July 2010, President Obama released the first ever National HIV/AIDS Strategy (NHAS), which sets three goals to meet by 2015: reducing new infections, increasing access to care and improving health outcomes, and reducing HIV/AIDS-related health disparities for PLWHA. The NHAS recognizes that access to housing is a necessary antecedent to engagement in and retention in care, and proposes increased federal supports for housing assistance (National HIV/AIDS Strategy for the United States, 2010). In seeking to capitalize on both the state and the nation s recognition that housing is an effective and necessary structural intervention for the treatment of HIV/AIDS, the Delaware HIV Consortium has conducted an informal study on the relationship between housing status and medical care adherence for PLWHA who were enrolled in care in Delaware in 2012. Hypothesis: Clients in CAREWare in 2012 who self-identify as stably housed will have greater medical care adherence than Clients who self-identify as unstably or nonpermanently housed. Methods: Utilizing CAREWare, a data collection/surveillance system employed by Delaware s Division of Public Health to collect information from PLWHA who are engaged in HIV/AIDS medical care in Delaware, the Administrator generated a report in January 2013 which included 2012 data on all Clients. Clients were first grouped by housing status, which was operationalized as follows: Stably Housed (which includes Clients who are listed in CAREWare as Stable or Permanently Housed) or Unstably Housed (which includes Clients who are listed in CAREWare as Non-Permanently Housed or Unstable).

Stable or Permanently housed included Clients who self-identified as living in apartments, houses, foster homes, long-term residences and boarding houses, as long as they were not time limited. Unstable or Non-Permanently housed included Clients who self-identified as homeless (residing in shelters, vehicles, the streets or other places not intended as a regular accommodation for living) and transient or as residing in transitional housing (stable but temporary living arrangements, regardless of whether or not it is a part of a formal program). The report compared medical care compliance between these two groups of Clients. Medical care adherence was operationalized as having two CD4+ Count Tests or two Viral Load Tests conducted within the calendar year of 2012. Results: The report generated by CAREWare included a total sample size of 1,993 individuals who were living with HIV/AIDS and were in care in Delaware in 2012. The majority of Clients enrolled in care in 2012 self-identified as stably housed. Of the total sample size, 1,563 individuals (approximately 78%) self-identified as stably housed, while 430 individuals (approximately 22%) self-identified as unstably housed. Of the 78% of individuals who self-identified as stably housed, 1,133 (72%) had 2 CD4+ or Viral Load tests in 2012, while 430 (28%) had less than 2 CD4+ or Viral Load tests in 2012. Of the 22% of individuals who self-identified as unstably housed, 91 (21%) had 2 CD4+ or Viral Load tests in 2012, while 339 (79%) had less than 2 CD4+ or Viral Load tests in 2012. Indicator of Medical Adherence 2 or More CD4 or Viral Load Tests <2 CD4 or Viral Load Tests Total Sample Stably Housed Unstably Housed 61% 1,133 (72%) 91 (21%) 39% 430 (28%) 339 (79%) Approximately 3% of the total sample size was under age 18 years, 10% was age 18 to 30 years, 48% was age 31 to 50 years, and 40% was age 51 years and older. Of the 78% of individuals who self-identified as stably housed, 1% was under 18 years, 10% was age 18 to 30 years, 49% was age 31 to 50 years, and 40% was age 51 years and older. Of the 22% of individuals who self-identified as unstably housed, 9% was under 18 years, 9% was age 18 to 30 years, 43% was age 31 to 50 years, and 40% was age 51 years and older.

Age Total Sample Stably Housed Unstably Housed Under 18 3% 13 (1%) 37 (9%) 18 to 30 10% 157 (10%) 37 (9%) 31 to 50 48% 764 (49%) 185 (43%) 51 and Older 40% 629 (40%) 171 (40%) Approximately 34.4% of the total sample size self-identified as female, 65.2% selfidentified as male, and.3% self-identified as transgender. Of the 78% of individuals who self-identified as stably housed, 34% self-identified as female, 66% self-identified as male, and.25% self-identified as transgender. Of the 22% of individuals who selfidentified as unstably housed, 36% self-identified as female, 63% self-identified as male, and.5% self-identified as transgender. Gender Total Sample Stably Housed (#) Unstably Housed Female 34% 532 (34%) 155 (36%) Male 65% 102 (66%) 273 (65.2%) Transgender 0.3% 4 (0.3%) 2 (0.5%) Approximately 92% of the total sample size self-identified as Non-Hispanic, while 6% self-identified as Hispanic. Of the 78% of individuals who self-identified as stably housed, 94% self-identified as Non-Hispanic while 6% identified as Hispanic. Of the 22% of individuals who self-identified as unstably housed, 88% self-identified as Non- Hispanic while 6% identified as Hispanic. Ethnicity Total Sample Stably Housed (#) Unstably Housed Non-Hispanic 92% 1,462 (94%) 378 (88%) Hispanic 6% 101 (6%) 25 (6%) Approximately.65% of the total sample size self-identified as American Indian/Alaskan Native,.15% as Asian, 62.66% as Black/African American,.1% as Native Hawaiian/Pacific Islander, 30.6% as White, 3.56% as Other Multiracial, and 2.25% as Unknown. Of the 78% of individuals who self-identified as stably housed,.76% selfidentified as American Indian/Alaskan Native,.12% as Asian, 62.95% as Black/African American,.12% as Native Hawaiian/Pacific Islander, 31.34% as White, 3.71% as Other

Multiracial, and.95% as Unknown. Of the 22% of individuals who self-identified as unstably housed,.23% self-identified as American Indian/Alaskan Native,.23% as Asian, 61.62% as Black/African American, 0% as Native Hawaiian/Pacific Islander, 27.9% as White, 3 % as Other Multiracial, and 6.97% as Unknown. Race Total Sample Stably Housed (#) Unstably Housed American Indian/Alaska Native.7% 12 (0.8%) 1 (0.2%) Asian.2% 2 (0.1%) 1 (0.2%) Black/African American 63% 984 (63%) 265 (62%) Native Hawaiian/Pacific Islander.1% 2 (0.1%) 0 (0%) White 31% 490 (31%) 120 (28%) Other Multi-Racial 4% 58 (0.4%) 13 (3%) Unknown 2% 15 (1%) 30 (7%) Discussion and Next Steps: The report generated by CAREWare of Clients who were engaged in medical care in 2012 indicated that the majority self-identified as stably housed, African American or White Males between the ages of 31 to 50 years or over 50 years. The results clearly demonstrated that Clients who self-identified as stably housed had greater medical care adherence than Clients who self-identified as unstably housed. Clients who self-identified as unstably housed who were engaged in medical care in 2012 were less likely to have at least 2 or More CD4+ or Viral Load tests in 2012. This study included several limitations. The data collected by CAREWare captured PLWHA in Delaware who were in medical care with Christiana Care Health System and whose information was entered into the CAREWare database. The study did not include PLWHA who did not know their status, who were not linked to care, who have fallen out of care, and/or who were under the care of a private practitioner. Additionally, the category of unstably housed covered a wide range of housing statuses, some of which had varying degrees of stability and instability. Finally, information regarding housing status was based on the Client s self-report. Further research should be considered to design a more structured and comprehensive study to include PLWHA who are receiving care in a more diverse range of settings, and to collect more concrete data, specifically in regards to identifying relationships between housing status, medical care adherence and other variables, such as gender, race, ethnicity, income, and so on.

As previously stated, Delaware recognizes the important correlation between an individual s housing status and HIV/AIDS-related health outcomes. To this end, the Delaware HIV Consortium is currently engaged in several efforts to advocate for increased housing access for PLWHA, and funding for HIV/AIDS-specific housing assistance programs. As the results CAREWare -generated report demonstrated that a Client s housing status impacts her or his medical care adherence, the Delaware HIV Consortium will use the results of this study to continue our current efforts as well increase our advocacy in the following areas: Each year, the Delaware HIV Consortium s Director of Housing has testified at the Delaware General Assembly s Joint Finance Committee hearings in Dover, and assisted clients with providing testimony to advocate for funding for HIV/AIDS-specific housing programs. The results of the CAREWare report will be utilized to enhance these current efforts to maintain, and possibly increase, current State Grant-in-Aid funding levels. The Consortium s housing staff is responsible for ensuring that annual grant requests, performance reports, and evaluation studies for our housing programs are submitted to our federal contract managers in a timely manner. The results of the CAREWare report would be incorporated into these documents as a compelling demonstration of the effectiveness of stable housing on special needs populations. In addition, this information would be presented in oral and written testimony at public hearings, community meetings, and other forums, both locally and nationally, to promote maximum federal funding for housing programs for persons living with HIV/AIDS. The Director of Housing Programs serves on a number of statewide committees and organizations involved in affordable housing and services that address the needs of special populations. The results of the CAREWare study would enhance the Delaware HIV Consortium in partnership with the Homeless Planning Council, the Delaware Housing Coalition, the Governor s Commission on Community-Based Alternatives Housing Subcommittee and other similar groups, in our combined efforts to promote stable housing and improve linkages to care for persons living with HIV/AIDS in Delaware. Delaware is currently embarked on a comprehensive housing plan for the state. As part of this effort, an initial assessment of the housing needs of persons with disabilities was undertaken in 2011, with a study released in April 2012. Special needs populations, including persons living with HIV/AIDS, participated in focus groups to discuss the importance of housing in managing their wellness and stability. A summary of these discussions was incorporated into the April 2012 report. The results of the CAREWare study would be shared with the community planning body so that this information could be incorporated into the final comprehensive housing plan.

In 2011, members of our Staff met with Senator Chris Coons of Delaware on multiple occasions, which resulted in him joining the bipartisan and bicameral Congressional HIV/AIDS Caucus. We will continue our engagement with Senator Coons, and include Senator Tom Carper and Congressman John Carney, also members of the Delaware Congressional Delegation, to advocate on issues which impact PLWHA. In September 2013, the Ryan White Care Act is up for reauthorization, and may change dramatically as a result of the full implementation of the Affordable Care Act in January 2014, and the Medicaid Expansion that will potentially insure 32 million additional individuals. As more medical services are covered by non-hiv specific legislation, dollars previously allocated to core medical services in the Ryan White budget could become available to increase funding of supportive services. The Delaware HIV Consortium will place special efforts in working with our Congressional Delegation and with other advocates to advance HIV/AIDS housing programs as a prioritized supportive service. For more information or to request copies of this report, please contact Joe Scarborough at the Delaware HIV Consortium Joe Scarborough Delaware HIV Consortium 100 W. 10 th St. Suite 415 Wilmington, DE 19801 (302) 654 5471 (Ex. 103) jscarborough@delawarehiv.org

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