Making Treatment as Prevention Work for People with Disabilities across the HIV Prevention and Care...
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P43.05 Do Civil Society Advocates’ Priorities Align with HIV Prevention Research Landscape? Lisa Jacobs, Manju Chatani, Angelo Kaggwa-Katumba AVAC, New York, NY, United States Background: HIV prevention research-to-rollout processes re- quire effective community advocates who understand the evolving landscape. The AVAC Advocacy Fellowship, launched in 2009, supports advocates to engage around these issues in their countries. AVAC sought to understand how applicants’ priorities relate to developments in the field. Methods: Desk analysis was conducted on 284 eligible appli- cations of over 400 submitted in the five years of the program to determine which interventions were of greatest interest each year and if any patterns emerged related to events in the field. Results: Voluntary medical male circumcision (VMMC) was identified in 91 applications, 80 of them received from 2009– 2011. Interest waned as countries ramped up, and PEPFAR began funding, VMMC programs. Microbicides were identified in 58 applications; however, 23 applications were received in 2009 and only 9 applications in 2010 - after CAPRISA 004 results were announced and there was confusion about what happens next. PrEP was identified in 57 applications with a surge in 2012 after the FDA approved Truvada for PrEP. Treatment as prevention was identified in 41 applications, all of which were received in 2011–2012 after HPTN 052 results were announced. While vaccine research has received relatively little interest, it was highest in 2009 just after RV144 showed positive results. Conclusions: Applicants’ interests seem to follow the events in the field, demonstrating that advocates are aware of and inter- ested to localize global events. Since AVAC amends its appli- cation materials every year and highlights priorities on its website, fluctuations in choice of interventions may reflect a selection bias. However, the trends are dramatic and reflect the evolving issues and interests of applicants to the Fellows pro- gram. Since AVAC can only offer a few Fellowships each year, more efforts are needed to support the large and informed pool of HIV prevention research advocates who are interested in en- gaging in the field. P43.06 Making Treatment as Prevention Work for People with Disabilities across the HIV Prevention and Care Continuum in Zambia Clever Chilende Treatment Advocacy and Literacy Campaign (TALC), Pro- grammes, Lusaka, Zambia Background: Since 2005, Zambia has developed a national universal HIV prevention and testing program with free anti- retroviral. Although prior research in sub-Saharan Africa has shown that people with disabilities are highly vulnerable to HIV, little research on this population has been done in Zambia, and the national HIV program has only recently included people with disabilities as a vulnerable population in its national strategy. Methods: In-depth interviews with adults, children and ado- lescents with physical, sensory and psychosocial disabilities were conducted in Zambia. Caregivers and parents of children with intellectual disabilities were also interviewed, as were health workers, special education teachers and representatives of disabled persons organizations and HIV organizations. Legal and policy analysis was also conducted. Results: Persons with disabilities experience pervasive stigma and social marginalization compounded by economic, commu- nication and physical barriers to access to HIV services throughout the HIV care continuum in Zambia. HIV prevention education and standard protocols for assuring informed consent and confidentiality in the provision of HIV testing and encour- aging ART adherence need to be tailored to the specific needs of individuals with disabilities. Existing HIV and health policies do not identify specific strategies and interventions to address people with disabilities. The equal right of people with dis- abilities to sexual and reproductive health is not recognized and they remain invisible to social protection services. Conclusions: Efforts to achieve universal access to HIV pre- vention and treatment in Zambia are undermined by the lack of programs addressing the needs of individuals with disabilities, and current policies and programs on HIV and disability lack adequate integration. Recognition of people with disabilities as a highly vulnerable group within the national HIV response has not been translated into implementation of inclusive and targeted services. P43.07 Not Without Us: Mobilizing Communities to Advocate for Women’s Involvement in PrEP Implementation Dazon D. Diallo SisterLove, Inc., Atlanta, GA, United States Background: As the US FDA considered the approval of the use of Truvada as PrEP, women in the US organized to address the need for greater community engagement in the implementation science informing the introduction of the intervention in clinics, community health centers and private care.Through an ad hoc coalition, US women’s communities advocating for safe HIV prevention options for women, including PrEP, convened a strategic working group dedicated to providing input, commu- nity-based qualitative research, and innovative strategies re- search to determine how to help women and their healthcare providers make PrEP a viable option. Methods: Community engagement in research includes activi- ties beyond the involvement of volunteers in trials, community advisory boards and local partnerships with service organiza- tions.Our methodology included a diversity of initiatives in- cluding: informational webinars/community symposia, key informant interviews, qualitative study with focus groups and surveys; implementation advocacy; engaging federal partners. Results: The work resulted in the following: convened 3 na- tional/international webinars for a total of 850 participants; captured qualitative data on knowledge, attitudes and beliefs of 85 women at high risk for transmission; published several arti- cles/op-eds in newsprint; presented papers, posters and work- shops at national and international meetings; and sustains a working group of nearly 80 interested parties/organizations. Conclusions: The implementation of research, such as PrEP, requires meaningful involvement and representation from the community most affected by the research outcomes.In the US, and key countries where PrEP is a priority, women’s education, understanding and acceptance of PrEP is an important step to its use as a prevention option.The community mobilization of women’s health/HIV advocates, clinical and behavioral/social scientists & WLwH is a key component of engaging community in research of a product before and after it has been approved. A257
Transcript of Making Treatment as Prevention Work for People with Disabilities across the HIV Prevention and Care...
P43.05Do Civil Society Advocates’ Priorities Align with HIVPrevention Research Landscape?
Lisa Jacobs, Manju Chatani, Angelo Kaggwa-Katumba
AVAC, New York, NY, United States
Background: HIV prevention research-to-rollout processes re-quire effective community advocates who understand theevolving landscape. The AVAC Advocacy Fellowship, launchedin 2009, supports advocates to engage around these issues intheir countries. AVAC sought to understand how applicants’priorities relate to developments in the field.Methods: Desk analysis was conducted on 284 eligible appli-cations of over 400 submitted in the five years of the program todetermine which interventions were of greatest interest eachyear and if any patterns emerged related to events in the field.Results: Voluntary medical male circumcision (VMMC) wasidentified in 91 applications, 80 of them received from 2009–2011. Interest waned as countries ramped up, and PEPFARbegan funding, VMMC programs. Microbicides were identifiedin 58 applications; however, 23 applications were received in2009 and only 9 applications in 2010 - after CAPRISA 004results were announced and there was confusion about whathappens next. PrEP was identified in 57 applications with a surgein 2012 after the FDA approved Truvada for PrEP. Treatment asprevention was identified in 41 applications, all of which werereceived in 2011–2012 after HPTN 052 results were announced.While vaccine research has received relatively little interest, itwas highest in 2009 just after RV144 showed positive results.Conclusions: Applicants’ interests seem to follow the events inthe field, demonstrating that advocates are aware of and inter-ested to localize global events. Since AVAC amends its appli-cation materials every year and highlights priorities on itswebsite, fluctuations in choice of interventions may reflect aselection bias. However, the trends are dramatic and reflect theevolving issues and interests of applicants to the Fellows pro-gram. Since AVAC can only offer a few Fellowships each year,more efforts are needed to support the large and informed pool ofHIV prevention research advocates who are interested in en-gaging in the field.
P43.06Making Treatment as Prevention Work for Peoplewith Disabilities across the HIV Prevention and CareContinuum in Zambia
Clever Chilende
Treatment Advocacy and Literacy Campaign (TALC), Pro-grammes, Lusaka, Zambia
Background: Since 2005, Zambia has developed a nationaluniversal HIV prevention and testing program with free anti-retroviral. Although prior research in sub-Saharan Africa hasshown that people with disabilities are highly vulnerable to HIV,little research on this population has been done in Zambia, andthe national HIV program has only recently included people withdisabilities as a vulnerable population in its national strategy.Methods: In-depth interviews with adults, children and ado-lescents with physical, sensory and psychosocial disabilitieswere conducted in Zambia. Caregivers and parents of childrenwith intellectual disabilities were also interviewed, as werehealth workers, special education teachers and representatives of
disabled persons organizations and HIV organizations. Legaland policy analysis was also conducted.Results: Persons with disabilities experience pervasive stigmaand social marginalization compounded by economic, commu-nication and physical barriers to access to HIV servicesthroughout the HIV care continuum in Zambia. HIV preventioneducation and standard protocols for assuring informed consentand confidentiality in the provision of HIV testing and encour-aging ART adherence need to be tailored to the specific needs ofindividuals with disabilities. Existing HIV and health policies donot identify specific strategies and interventions to addresspeople with disabilities. The equal right of people with dis-abilities to sexual and reproductive health is not recognized andthey remain invisible to social protection services.Conclusions: Efforts to achieve universal access to HIV pre-vention and treatment in Zambia are undermined by the lack ofprograms addressing the needs of individuals with disabilities, andcurrent policies and programs on HIV and disability lack adequateintegration. Recognition of people with disabilities as a highlyvulnerable group within the national HIV response has not beentranslated into implementation of inclusive and targeted services.
P43.07Not Without Us: Mobilizing Communities to Advocatefor Women’s Involvement in PrEP Implementation
Dazon D. Diallo
SisterLove, Inc., Atlanta, GA, United States
Background: As the US FDA considered the approval of the useof Truvada as PrEP, women in the US organized to address theneed for greater community engagement in the implementationscience informing the introduction of the intervention in clinics,community health centers and private care.Through an ad hoccoalition, US women’s communities advocating for safe HIVprevention options for women, including PrEP, convened astrategic working group dedicated to providing input, commu-nity-based qualitative research, and innovative strategies re-search to determine how to help women and their healthcareproviders make PrEP a viable option.Methods: Community engagement in research includes activi-ties beyond the involvement of volunteers in trials, communityadvisory boards and local partnerships with service organiza-tions.Our methodology included a diversity of initiatives in-cluding: informational webinars/community symposia, keyinformant interviews, qualitative study with focus groups andsurveys; implementation advocacy; engaging federal partners.Results: The work resulted in the following: convened 3 na-tional/international webinars for a total of 850 participants;captured qualitative data on knowledge, attitudes and beliefs of85 women at high risk for transmission; published several arti-cles/op-eds in newsprint; presented papers, posters and work-shops at national and international meetings; and sustains aworking group of nearly 80 interested parties/organizations.Conclusions: The implementation of research, such as PrEP,requires meaningful involvement and representation from thecommunity most affected by the research outcomes.In the US,and key countries where PrEP is a priority, women’s education,understanding and acceptance of PrEP is an important step to itsuse as a prevention option.The community mobilization ofwomen’s health/HIV advocates, clinical and behavioral/socialscientists & WLwH is a key component of engaging communityin research of a product before and after it has been approved.
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