California, Colorado, and Canada have recently enacted physician aid-in-dying (PAD) legislation. Almost one fifth of the US population now lives in a state where patients can ask their physician for assistance with ending their lives. How will that "option" play out in an aging society plagued by ever-increasing inequality? California is the most diverse locale to enact PAD as a routine practice. There are 1.75 million residents of color over the age of 65. A state-wide group convened by the UCSF Bioethics Program has worked to provide guidance about the End of Life Option Act's implementation to clinicians throughout the state. This presentation will report on these efforts, highlighting the unique ethical challenges for patients living in residential long term care facilities and for providers caring for an aging populace.
Purpose of the studyIn Germany, older age is described as a risk factor for late presentation of HIV disease (defined as<200 CD4/μL or AIDS at diagnosis). We describe treatment outcomes with respect to age distribution at the time of antiretroviral therapy (ART) initiation in the multicentre, observational, ongoing STAR and STELLA cohorts, which included patients (pts) initiated on LPV/r‐based ART.MethodsThis analysis included ART‐naïve HIV+ pts with a minimum of 48 weeks follow‐up. Time to virologic response (defined as HIV1‐RNA <50 c/mL) and time to CD4 cell increase of at least 100/μL were calculated using Kaplan‐Meier analyses. Virologic response rates at week 48 were evaluated using 2 approaches: i) defining discontinuations for virologic or immunologic failure, side effects, noncompliance, or death as failures (ITT) and ii) as‐treated (AT) analysis excluding discontinuations for reasons other than virologic failure.Summary of results1011 ART‐naïve pts were included (85% men; median age 43 years [y]). Baseline (BL) characteristics and treatment response rates are shown in Table 1. The overall prevalence of advanced immunodeficiency with<200 CD4/μL at ART initiation was 48%:*Comparison across groups64% in pts aged >60 y and 31%–49% in the younger age groups (see Table 1). Across age groups, 43%–60% of pts had pretreatment HIV1‐RNA levels>100,000 c/mL. Median times to virologic response (Figure 1) and response rates at week 48 did not differ across age groups in either analysis, nor did immunologic outcomes. Median times to+100/μL CD4 increase were between 11.1 and 15.3 weeks. CD4 increase at week 48 was lower in pts >60 y compared to patients of younger age categories (165/μL vs 211/μL; P=ns). However, these differences between age groups did not reach statistical significance, even when stratified by baseline CD4 count<vs=200/μL. Over the first 48 weeks of therapy, clinical and laboratory adverse events (AEs) of grade 3 or 4 were spontaneously reported in 9.6% of pts in the=60 y group and 4.5% of pts in the >60 y group (P=0.194). In addition, 11.3 % of pts =60 and 14.9% of pts >60 y discontinued therapy prior to week 48 due to treatment related AEs (P=0.427).
Age, y ≤30 >30–40 >40–50 >50–60 >60 P value Statistical tests*
N 68 321 411 144 67
Male, % 69 80 89 89 88 P<0.001 χ2
Median time since diagnosis, y (IQR) 0.79 (0.21–2.98) 0.67 (0.09–3.23) 0.32 (0.06–3.24) 0.35 (0.06–2.27) 0.10 (0.05–0.69) P=0.015 Kruskal‐Wallis
ConclusionsIn the STAR/STELLA cohorts, pts aged >60 y had high rates of late presentation, with two‐thirds of patients with CD4 cell counts<200/μL. Nevertheless, older pts did not differ significantly from younger pts regarding immunologic and virologic response after initiation of LPV/r‐based therapy. image
Background Governments, funding bodies, institutions, and publishers have developed a number of strategies to encourage researchers to facilitate access to datasets. The rationale behind this approach is that this will bring a number of benefits and enable advances in healthcare and medicine by allowing the maximum returns from the investment in research, as well as reducing waste and promoting transparency. As this approach gains momentum, these data-sharing practices have implications for many kinds of research as they become standard practice across the world. Main text The governance frameworks that have been developed to support biomedical research are not well equipped to deal with the complexities of international data sharing. This system is nationally based and is dependent upon expert committees for oversight and compliance, which has often led to piece-meal decisionmaking. This system tends to perpetuate inequalities by obscuring the contributions and the important role of different data providers along the data stream, whether they be low- or middle-income country researchers, patients, research participants, groups, or communities. As research and data-sharing activities are largely publicly funded, there is a strong moral argument for including the people who provide the data in decision-making and to develop governance systems for their continued participation. Conclusions We recommend that governance of science becomes more transparent, representative, and responsive to the voices of many constituencies by conducting public consultations about data-sharing addressing issues of access and use; including all data providers in decision-making about the use and sharing of data along the whole of the data stream; and using digital technologies to encourage accessibility, transparency, and accountability. We anticipate that this approach could enhance the legitimacy of the research process, generate insights that may otherwise be overlooked or ignored, and help to bring valuable perspectives into the ...
