Rethinking "Elective" Procedures for Women's Reproduction during Covid-19.

Common hospital and surgical center responses to the Covid-19 pandemic included curtailing "elective" procedures, which are typically determined based on implications for physical health and survival. However, in the focus solely on physical health and survival, procedures whose main benefits advance components of well-being beyond health, including self-determination, personal security, economic stability, equal respect, and creation of meaningful social relationships, have been disproportionately deprioritized. We describe how female reproduction-related procedures, including abortion, surgical sterilization, reversible contraception devices and in vitro fertilization, have been broadly categorized as "elective," a designation that fails to capture the value of these procedures or their impact on women's overall well-being. We argue that corresponding restrictions and delays of these procedures are problematically reflective of underlying structural views that marginalize women's rights and interests and therefore threaten to propagate gender injustice during the pandemic and beyond. Finally, we propose a framework for triaging reproduction-related procedures during Covid-19 that is more individualized, accounts for their significance for comprehensive well-being, and can be used to inform resumption of operations as well as subsequent restriction phases.

Chemotherapy drug shortages in pediatric oncology: a consensus statement.

Shortages of essential drugs, including critical chemotherapy drugs, have become commonplace. Drug shortages cost significant time and financial resources, lead to adverse patient outcomes, delay clinical trials, and pose significant ethical challenges. Pediatric oncology is particularly susceptible to drug shortages, presenting an opportunity to examine these ethical issues and provide recommendations for preventing and alleviating shortages. We convened the Working Group on Chemotherapy Drug Shortages in Pediatric Oncology (WG) and developed consensus on the core ethical values and practical actions necessary for a coordinated response to the problem of shortages by institutions, agencies, and other stakeholders. The interdisciplinary and multiinstitutional WG included practicing pediatric hematologist-oncologists, nurses, hospital pharmacists, bioethicists, experts in emergency management and public policy, legal scholars, patient/family advocates, and leaders of relevant professional societies and organizations. The WG endorsed 2 core ethical values: maximizing the potential benefits of effective drugs and ensuring equitable access. From these, we developed 6 recommendations: (1) supporting national polices to prevent shortages, (2) optimizing use of drug supplies, (3) giving equal priority to evidence-based uses of drugs whether they occur within or outside clinical trials, (4) developing an improved clearinghouse for sharing drug shortage information, (5) exploring the sharing of drug supplies among institutions, and (6) developing proactive stakeholder engagement strategies to facilitate prevention and management of shortages. Each recommendation includes an ethical rationale, action items, and barriers that must be overcome. Implemented together, they provide a blueprint for effective and ethical management of drug shortages in pediatric oncology and beyond.

Expensive cancer drugs: a comparison between the United States and the United Kingdom.

CONTEXT: This article compares the United Kingdom's and the United States' experiences with expensive cancer drugs to illustrate the challenges posed by new, extremely costly, medical technologies. METHODS: This article describes British and American coverage, access, and cost-sharing policies with regard to expensive cancer drugs and then compares the costs of eleven such drugs to British patients, American Medicare beneficiaries, and American patients purchasing the drugs in the retail market. Three questions posed by these comparisons are then examined: First, which system is fairer? In which system are cancer patients better off? Assuming that no system can sustainably provide to everyone at least some expensive cancer drugs for some clinical indications, what challenges does each system face in making these difficult determinations? FINDINGS: In both the British and American health care systems, not all patients who might benefit from or desire access to expensive cancer drugs have access to them. The popular characterization of the United States, where all cancer drugs are available for all to access as and when needed, and that of the British NHS, where top-down population rationing poses insurmountable obstacles to British patients' access, are far from the reality in both countries. CONCLUSIONS: Key elements of the British system are fairer than the American system, and the British system is better structured to deal with difficult decisions about expensive end-of-life cancer drugs. Both systems face common ethical, financial, organizational, and priority-setting challenges in making these decisions.

Access to health insurance: experiences and attitudes of those with genetic versus non-genetic medical conditions.

While studies reveal that individuals with both genetic and other chronic medical conditions have difficulty obtaining health insurance, no large-scale studies have compared the health insurance experiences of these groups. The goal of this study was to document and compare the health insurance experiences, attitudes, and beliefs of persons with genetic conditions to those of persons with or at risk for other serious medical conditions. We interviewed approximately 100 adults or parents of children with one of each of the following medical conditions: sickle cell disease (SCD), cystic fibrosis (CF), diabetes, and HIV, and 200 adults with or at risk for breast (BC) or colon cancer (CC). The interview included items related to respondents' experiences and attitudes regarding health insurance. Twenty-seven percent of 597 total respondents self-reported having been denied health insurance or offered insurance at a prohibitive rate. Respondents with single-gene disorders (CF and SCD) were twice as likely to report this as those with non-genetic conditions. Legislation that exists to limit genetic discrimination in insurance addresses genetic risks or traits only, however, rather than protecting those with actual disease. Thus, current legislation may not address the challenges faced by individuals like those in this study, who try to maintain access to health insurance when they or their children are symptomatic with a genetic or other serious health condition. More than one-third of all respondents thought there was a high chance they would be denied health insurance in the future or their insurance would become unaffordable. That individuals with all six health conditions expressed concern regarding their ability to obtain future health insurance suggests policy proposals should be broad-based, addressing the needs and concerns of individuals with diverse health conditions.

Medical privacy and the disclosure of personal medical information: the beliefs and experiences of those with genetic and other clinical conditions.

There has been heightened legislative attention to medical privacy and to protections from genetic discrimination, without large-scale studies to document privacy concerns or analysis of whether experiences differ by whether the condition is genetic (defined here as a single-gene disorder) or non-genetic. To determine whether experiences regarding privacy, disclosure, and consequences of disclosure differ by whether one's medical condition is genetic, we conducted a descriptive study with one-time, structured quantitative and qualitative interviews. We interviewed approximately 100 adults or parents of children with each of the following medical conditions: sickle cell disease, cystic fibrosis, diabetes, and HIV, and 200 adults with or at risk for breast cancer or colon cancer. The percentages of the total 597 respondents experiencing positive or negative consequences of disclosure and the degree to which experiences differed by whether the condition was genetic were the outcomes of interest. Seventy-four percent were glad and 13% regretted others knew about their condition; these findings did not differ significantly by genetic vs. non-genetic condition. Reports of job and health insurance discrimination were not uncommon for the overall study population (19 and 27%, respectively) but were more likely among those with genetic conditions (30 and 37%, respectively). Legislation and other policy-making should target the needs of persons with all conditions and not focus exclusively on genetic discrimination, given that experiences and concerns generally do not differ based on the genetic etiology of the condition.