'You're just a Guinea pig': Exploring the barriers and impacts of living with long COVID-19: A view from the undiagnosed.

The COVID-19 pandemic had a disproportionate impact on ethnically minoritised and other marginalised communities, yet little is known about the impacts of long COVID-19 (LC) on this group. Living with LC takes its toll both physically, emotionally and financially and even more so when a diagnosis is hard to come by. By using qualitative interviews centring the view of undiagnosed and marginalised communities already classed as 'underserved' in the medical literature, we show the range of barriers and impacts faced by these groups in the UK, and the strategies of resilience they use. Whether trapped on a 'diagnostic odyssey' at the level of primary care, struggling to maintain employment and businesses, or managing family commitments, we argue many minoritised communities are caught in a liminal space of misrecognition, invalidation and ambiguity. We show how these impacts are generated by tensions and challenges in the process and categorisation of diagnosis, and how this effects the daily lives of many individuals already on the receiving end of health inequity. We also offer some examples and suggestions for best practices.

Should mitochondrial replacement therapy be funded by the National Health Service?

A clinical trial on mitochondrial replacement therapy (MRT) is currently being conducted and if this technique proves effective, National Health Service (NHS) England will fund MRT through the highly specialised services (HSS) funding stream. This paper considers whether MRT should be publicly funded by the NHS. Given the current financial pressure the NHS is experiencing, a comprehensive discussion is essential. There is yet to be a thorough discussion on MRT funding, perhaps because this is a small-scale issue and presumed to be covered by the HSS budget. However, the source of funding has not been confirmed due to the trial's incompletion. Upon its completion, reasoned decisions need to be made over the allocation of scarce NHS resources. It is therefore important to consider the following arguments in advance. Three arguments given against NHS funding of MRT will be evaluated. The first argument against NHS funding examines the HSS overspending its budget in an underfunded NHS, suggesting funding must be carefully reprioritised. Second, the ethical issue of allowing public access to a technique with insufficient evidence behind it will be explored. The final point considers the option of privately funding MRT and how this would affect the treatment's development. After illustrating the weaknesses of such arguments, it will be concluded that MRT should be funded by the NHS.

Effect of increasing voluntary folic acid food fortification on dietary folate intakes and adequacy of reproductive-age women in New Zealand.

OBJECTIVE: Mandatory folic acid fortification of breads in New Zealand was put on hold in 2009. At this time, bread manufacturers were requested to adopt greater voluntary fortification and agreed to add folic acid to approximately one-third of their bread range. We sought to evaluate the impact of increased voluntary fortification of bread and the proposed mandatory fortification programme on folate intake adequacy of reproductive-age women. DESIGN: Cross-sectional study conducted in 2008. Dietary data were collected using 3 d weighed food records and usual folate intakes were generated by modifying the food composition table as follows: (i) voluntary fortification of bread as of 2008 (six breads); (ii) increased voluntary fortification of bread as of 2011 (thirty-four breads); and (iii) mandatory fortification of all breads. The prevalence of inadequate folate intake was calculated for all three scenarios using the Estimated Average Requirement (320 µg dietary folate equivalents/d) cut-point method. SETTING: New Zealand. SUBJECTS: Healthy non-pregnant women (n 125) aged 18-40 years. RESULTS: Usual folate intake in 2008 was 362 µg dietary folate equivalents/d. Increased voluntary bread fortification led to a marginal increase in folate intakes (394 µg dietary folate equivalents/d) and a decline in inadequacy from 37 % to 29 %. Mandatory fortification resulted in an increase of 89 µg folic acid/d, which substantially shifted both the proportion of women with folic acid intakes above 100 µg/d and the distribution of overall folate intakes, producing a marked reduction in inadequacy to 5 %. CONCLUSIONS: Increased voluntary bread fortification efforts are far inferior to mandatory fortification as a reliable public health intervention.

Combined gonadotropin therapy to replace mini-puberty in male infants with congenital hypogonadotropic hypogonadism.

Infants born with severe central disorders of the hypothalamic-pituitary-gonadal axis leading to gonadotropin deficiency not only lack pubertal development in adolescence, but also lack infantile mini-puberty. This period of mini-puberty, where infants have gonadotropin and sex steroid concentrations up into the adult range, is vital for future reproductive capacity, particularly in boys. At present, there is no consensus on the diagnosis or management of infants with gonadotropin deficiency due to congenital hypogonadotropic hypogonadism or multiple pituitary hormone deficiency. Case series suggest that gonadotropin treatment in male infants with absent mini-puberty is effective in promoting both testicular descent in those with undescended testes and also facilitating increased penile size. Moreover, replacement with follicle-stimulating hormone increases the testicular Sertoli cell population, measurable as an increase in testicular volume and inhibin B, thus hypothetically increasing the capacity for spermatogenesis in adult life for these patients. However, long-term follow-up data is limited for both outcomes pertaining to fertility and nonreproductive sequelae, including neurodevelopment and psychological well-being. The use of international registries for patients with gonadotropin deficiency is a key element in the collection of high-quality, geographically widespread data to inform best-practice management from birth to adulthood.

Financial access to health care in Karuzi, Burundi: a household-survey based performance evaluation.

BACKGROUND: In 2003, Médecins Sans Frontières, the provincial government, and the provincial health authority began a community project to guarantee financial access to primary health care in Karuzi province, Burundi. The project used a community-based assessment to provide exemption cards for indigent households and a reduced flat fee for consultations for all other households. METHODS: An evaluation was carried out in 2005 to assess the impact of this project. Primary data collection was through a cross-sectional household survey of the catchment areas of 10 public health centres. A questionnaire was used to determine the accuracy of the community-identification method, households' access to health care, and costs of care. Household socioeconomic status was determined by reported expenditures and access to land. RESULTS: Financial access to care at the nearest health centre was ensured for 70% of the population. Of the remaining 30%, half experienced financial barriers to access and the other half chose alternative sites of care. The community-based assessment increased the number of people of the population who qualified for fee exemptions to 8.6% but many people who met the indigent criteria did not receive a card. Eighty-eight percent of the population lived under the poverty threshold. Referring to the last sickness episode, 87% of households reported having no money available and 25% risked further impoverishment because of healthcare costs even with the financial support system in place. CONCLUSION: The flat fee policy was found to reduce cost barriers for some households but, given the generalized poverty in the area, the fee still posed a significant financial burden. This report showed the limits of a programme of fee exemption for indigent households and a flat fee for others in a context of widespread poverty.

Estimation of usual intake and food sources of choline and betaine in New Zealand reproductive age women.

Recently, choline has been associated with neurodevelopment, cognitive function and neural tube defect incidence. However, data on usual intakes are limited, and estimates of dietary intakes of choline and its metabolite betaine, are not available for New Zealanders. The objective of the present study was to determine usual intake and food sources of choline and betaine in a group of New Zealand reproductive age women. Dietary intake data were collected from a sample of 125 women, aged 18-40 years, by means of a 3-day weighed food record, and usual choline and betaine intake distributions were determined. The mean (SD) daily intakes of choline and betaine were 316 (66) mg and 178 (66) mg, respectively. The total choline intake relative to energy intake and body weight was 0.18 mg/kcal and 5.1 mg/kg, respectively. Only 16% of participants met or exceeded the Adequate Intake (AI) for adult women of 425 mg of choline. The top five major food contributors of choline were eggs, red meat, milk, bread and chicken; and of betaine were bread, breakfast cereal, pasta, grains and root vegetables (carrots, parsnips, beetroot, swedes). Our findings contribute towards the recent emergence of published reports on the range of dietary choline and betaine intakes consumed by free-living populations. In our sample of New Zealand women, few participants were meeting or exceeding the AI level. Given recent epidemiological evidence suggesting health benefits of increased choline and betaine intakes, recommendations should be made to encourage the consumption of choline and betaine-rich foods.