Desert AIDS Project

Extant literature on transgender and gender-diverse (TGD) people living in the United States is centered on bicoastal metropolitan cities. Little is known about the health status and health-related barriers among TGD people living in the middle of the country. Minority Stress Theory (MST) provides a framework for understanding how TGD people experience stressors that shape their health-related experiences. To describe health-related experiences of TGD people living in Colorado using the MST framework. The scoping review was limited to peer-reviewed, English-language studies published between January 2018 and November 2023. Data abstraction and synthesis were performed using Thomas and Harden's approach to thematic synthesis. Twenty-one articles were included in the review. Seventeen (80.9%) articles were quantitative studies, two (9.5%) were qualitative, and two (9.5%) were mixed methods. Most of the participants were transfeminine and 18 years old or younger. Three themes emerged (1) TGD Coloradans experience multiple health-related stressors, (2) these stressors contribute to poor health outcomes, and (3) overcome with coping strategies and/or social support. TGD Coloradans experience multiple stressors related to their TGD identity that shape their health-related experiences. Nurses play a critical role in intervening in these stressors and addressing care disparities.

The concept of vulnerability in bioethics was first referenced in 1979, when the Belmont Report highlighted the need for special consideration of certain populations in the application of its general principles of respect for persons, beneficence, and justice in research with human participants. Since then, a body of literature has emerged regarding the content, status, and scope, as well as ethical and practical implications of vulnerability in biomedical research. The social history of HIV treatment development has at various points reflected and actively influenced bioethics' debate on vulnerability. In the late 1980s and early 1990s, people with AIDS activist groups drafted landmark patient empowerment manifestos like The Denver Principles, fighting to have greater involvement in the design and oversight of clinical trials related to HIV treatment, and in doing so, pushed against research ethics protocols created with the intention of protecting vulnerable populations. The determination of appropriate benefit/risk profiles in clinical trials was no longer limited to the purview of clinicians and scientists, but began to include the perspectives of people with HIV (PWH) and affected communities. In contemporary HIV cure-related research, where participants often risk health for no personal clinical benefit, the community's voiced motivations and objectives for participation continue to challenge population-based accounts of vulnerability. While the development of a framework for discussion and the establishment of clear regulatory requirements are necessary to support the practical and ethical conduct of research, they risk distraction from the fundamental value of voluntary participation and potentially overlook the unique history and perspectives of PWH in their participation in the quest toward an HIV cure.

ABSTRACT We compared completion of advance directives (AD), designation of a healthcare proxy, and stage in the advance care planning process (pre-contemplation/contemplation, preparation/action) between older adults with (N = 110) and without (N = 50) HIV. Participants’ mean age was 61.3, most identified as male (82%) and sexual minorities (74%), were racially/ethnically diverse (44% white, 28% Latinx, 16% Black); 37% had an AD and 44% had a healthcare proxy. In adjusted logistic regressions, HIV− individuals had higher odds of being in preparation/action for having an AD (aOR: 2.6) and healthcare proxy (aOR: 3.6) compared to people living with HIV. Older age (aOR: 1.1) and having a sense of greater purpose in life (aOR: 2.1) were also positively associated with being in the preparation/action stage for having a healthcare proxy.

BackgroundHIV cure research involving cell and gene therapy has intensified in recent years. There is a growing need to identify ethical standards and safeguards to ensure cell and gene therapy (CGT) HIV cure research remains valued and acceptable to as many stakeholders as possible as it advances on a global scale.MethodsTo elicit preliminary ethical and practical considerations to guide CGT HIV cure research, we implemented a qualitative, in-depth interview study with three key stakeholder groups in the United States: (1) biomedical HIV cure researchers, (2) bioethicists, and (3) community stakeholders. Interviews permitted evaluation of informants’ perspectives on how CGT HIV cure research should ethically occur, and were transcribed verbatim. We applied conventional content analysis focused on inductive reasoning to analyze the rich qualitative data and derive key ethical and practical considerations related to CGT towards an HIV cure.ResultsWe interviewed 13 biomedical researchers, 5 community members, and 1 bioethicist. Informants generated considerations related to: perceived benefits of CGT towards an HIV cure, perceived risks, considerations necessary to ensure an acceptable benefit/risk balance, CGT strategies considered unacceptable, additional ethical considerations, and considerations for first-in-human CGT HIV cure trials. Informants also proposed important safeguards to developing CGT approaches towards an HIV cure, such as the importance of mitigating off-target effects, mitigating risks associated with long-term duration of CGT interventions, and mitigating risks of immune overreactions.ConclusionOur study identified preliminary considerations for CGT-based HIV cure across three key stakeholder groups. Respondents identified an ideal cure strategy as one which would durably control HIV infection, protect the individual from re-acquisition, and eliminate transmission to others. Known and unknown risks should be anticipated and perceived as learning opportunities to preserve and honor the altruism of participants. Preclinical studies should support these considerations and be transparently reviewed by regulatory experts and peers prior to first-in-human studies. To protect the public trust in CGT HIV cure research, ethical and practical considerations should be periodically revisited and updated as the science continues to evolve. Additional ethics studies are required to expand stakeholder participation to include traditionally marginalized groups and clinical care providers.

After the original publication of this manuscript [Thompson MA, Horberg MA, Agwu AL, et al. Primary Care Guidance for Persons With Human Immunodeficiency Virus: 2020 Update by the HIV Medicine Association of the Infectious Diseases Society of America. Clin Infect Dis; November 2020. https://doi.org/10.1093/cid/ciaa1391], revisions were submitted for Table 5 under Section III, "ROUTINE HEALTHCARE MAINTENANCE CONSIDERATIONS FOR PEOPLE WITH HIV". Recommendation for Vaccinations have been updated to read: "Pneumococcus (PCV13 and PPV23): repeat PPV23 once 5 years after first vaccination. Give a third and final dose of PPV23 after age 65. All patients with HIV should receive 1 dose of PCV13. If not vaccinated previously, this should be the first dose, If previously vaccinated, give 1 dose of PCV13 at least 1 year after PPV23." Recommendation for Colon Cancer Screenings has been updated to read: "Age 45-75 years if average risk (including personal and family history). Age 76-85...

To evaluate negative and positive health care experiences within the racial-ethnically diverse transgender and gender-nonconforming (TGNC) community in the Inland Empire, California. Three focus groups were conducted with a racial-ethnically diverse sample of 20 TGNC-identified individuals in California's Inland Empire. The rigorous and accelerated data reduction (RADaR) technique was used to systematically analyze the qualitative data and identify salient themes. Key themes included the following: a lack of TGNC cultural competency among providers, interpersonal barriers to health care, perceived systemic barriers to health care, and the effects of improper care on TGNC patients' health. Lack of cultural competency included providers' conflations of gender and sexuality and unawareness of nonbinary gender identities. Interpersonal barriers included patient experiences of being misgendered, refused treatment, and referred to by their deadnames. Perceived systemic barriers included insurance coverage, transportation issues, and a lack of expedient care. The effects of improper care were highlighted by participants seeking alternative and sometimes unsafe forms of care when timely and appropriate care was inaccessible. Participants recommended increasing representation of TGNC perspectives into provider trainings, involving providers in outreach with the TGNC community, and requiring letters of recommendation and certifications for providers to be deemed TGNC culturally competent as means of improving TGNC patient care.

Background Background: Analytical treatment interruptions (ATIs) in HIV cure-related research can result in trial participants becoming viremic with HIV, placing HIV-negative sexual partners at elevated risk of acquiring HIV. Objective Objective:Our study aimed to generate ethical and practical considerations for designing and implementing appropriate risk mitigation strategies to reduce unintended HIV transmission events during ATIs. Methods Methods: We conducted 21 in-depth interviews with five types of informants: bioethicists, community members, biomedical HIV cure researchers, socio-behavioral scientists/epidemiologists, and HIV care providers. We used conventional content analysis to analyze the data and generate considerations. Results Results: Key findings include: 1) Ethical permissibility of ATI trials depends on due diligence and informed consent to mitigate risks to participants and their sexual partners; 2) Participants should receive adequate support and/or counseling if they choose to disclose ATI participation to their partners; 3) Measures to protect sexual partners of trial participants from HIV transmission during ATIs should include referral to and/or provision of pre-exposure prophylaxis, as well as other available means of preventing HIV transmission; 4) There is uncertainty regarding the appropriate management of emerging sexually transmitted infections during ATI trials and possible protection measures for multiple and/or anonymous partners of ATI trial participants. Conclusion Conclusion: While there is no way to completely eliminate the risk of HIV transmission to sexual partners during ATIs, HIV cure trialists and sponsors should consider the ethical concerns related to the sexual partners of ATI participants. Doing so is essential to ensuring the welfare of participants, their partners and the trustworthiness of research.

Abstract The increased use of information and communication technologies (ICTs) has triggered enormous innovation in the public sector and created positive public value at the managerial, delivery of services, and policy levels. However, these positive outcomes do not automatically accrue simply by adoption of ICTs as public leaders can fail to adopt relevant new ICTs, use them poorly, or use them in ways that actually diminish public value, which raises the question of the importance of e‐leadership. This article examines e‐leadership and innovation capacity at the individual public manager level and fills in some gaps about the practice and implementation of ICTs in the public sector. We explore eight research questions useful in theorizing about e‐leadership, develop constructs of e‐leadership, and describe the current development of e‐leadership. By comparing e‐leadership in two country settings (South Korea and the United States), we also overcome the limitations of the existing Western‐oriented studies about innovations in the public sector. In addition to the growth of e‐leadership use and requirements for a variety of competencies equivalent to, but separate from, traditional communication competences, we find that national cultures exert significant influence on the major constructs of e‐leadership, which implies that an effective e‐leadership strategy should consider cultural contexts seriously.