Meaningful Engagement of People Living With Noncommunicable Diseases: Challenges and Opportunities.

Meaningful engagement of people living with health conditions means actively incorporating them in all stages of health decision-making. Despite efforts by global health agencies and governments towards meaningful engagement of people living with noncommunicable diseases (PLWNCDs), many opportunities for participation are tokenistic. PLWNCDs often report feeling excluded from technical discussions and outnumbered by other stakeholders. Participation in decision-making is a human right, and PLWNCDs must continue advocating for a "nothing about us without us" approach. They should be respected as decision-makers with voice, agency, voting power, rights, and duties. This article highlights four key themes: (1) both tokenistic participation and exclusion of PLWNCDs from technical discussions are still common; (2) the "patient" label implies passivity and can perpetuate limited participation, whereas the identifier of PLWNCDs connotes valuable knowledge associated with lived experience; (3) meaningful participation of PLWNCDs in health decision-making processes should be considered a human right; (4) PLWNCD should be empowered to continue to advocate for inclusion and be respected as decision-makers.

Type 1 diabetes patient experiences and management practices during the COVID-19 pandemic in rural Uganda.

Background: The COVID-19 pandemic has impacted various aspects of the lives of persons with chronic diseases, including type 1 diabetes (T1D). However, the diabetes care experiences and practices adopted by persons living with T1D after the declaration of the COVID-19 pandemic in Uganda have not been well documented. Objectives: We investigated diabetes management practices and experiences of persons with T1D during the COVID-19 pandemic lockdown in a rural district of southwestern Uganda. Methods: Using interactive sequential explanatory mixed methods, we conducted a cross-sectional study of persons with T1D aged 18-25 years, their caregivers and health workers. Quantitative data was exclusively collected from patients with T1D using Kobo Toolbox™ and analysed with SPSS™ version 26; qualitative interviews were used to elicit responses from purposively selected patients with T1D, plus caregivers and health workers that were analysed using a thematic framework approach. Results: The study enrolled 51 (24 males) patients with T1D; diabetes duration (mean ± SD) 6.6 ± 5 years. Access to insulin syringes significantly worsened in 19.6% of participants (p = 0.03). Insulin injection frequency (p = 0.01), blood glucose monitoring (p = 0.001) and meal frequency (p = 0.0001) significantly decreased. Qualitative interviews highlighted COVID-19 restriction measures had reduced household income, frequency of clinic visits, and access to food, diabetes support and social services. Conclusions: Experiences and practices were consistent with decisions to prioritise survival, even with known risks around metabolic control. Supplementary Information: The online version contains supplementary material available at 10.1007/s40200-023-01222-4.

A human rights-based approach to improve access to insulin and other aspects of diabetes care.

Many nations struggle to provide adequate diabetes care. Legal as well as moral obligations may facilitate access. International human rights law places obligations on governments to ensure the accessibility and affordability of insulin (a World Health Organization essential medicine), and other components of diabetes care. Despite this obligation, the global reality is that access remains deficient. A human rights approach facilitating the improvement of diabetes services and equitable access to insulin provides a strong framework, theoretically and practically, for advocacy and policymaking changes. This approach links governments to their international obligations, fosters the ideal of, and adherence to, national essential medicine lists, complements the pursuit of international goals in non-communicable diseases, and should influence the actions of pharmaceutical and device companies. This approach empowers patients, families, and communities living with diabetes, and grounds actions by governments, clinicians, and non-government organisations in the principles of dignity, non-discrimination, and equity of access.

Global estimates of incidence of type 1 diabetes in children and adolescents: Results from the International Diabetes Federation Atlas, 10th edition.

BACKGROUND: Type 1 diabetes (T1D) incidence in children and adolescents varies widely, and is increasing in many nations. The 10th edition of the International Diabetes Federation Atlas estimated incident cases in 2021 for 215 countries/territories ("countries"). METHODS: Studies on T1D incidence for young people aged 0-19 years were sourced and graded using previously described methods. For countries without studies, data were extrapolated from similar nearby countries. RESULTS: An estimated 108,300 children under 15 years will be diagnosed in 2021, a number rising to 149,500 when the age range extends to under 20 years. The ratio of incidence in 15-19 years compared to those aged 0-14 years was particularly high in some countries in sub-Saharan Africa, North Africa/Middle East, and in Mexico. Only 97 countries have their own incidence data, with extrapolation required for some very populous nations. Most data published were not recent, with 27 countries (28%) having data in which the last study year was 2015 or afterwards, and 26 (27%) having no data after 1999. CONCLUSIONS: Many countries have recent data but there are large gaps globally. Such data are critical for allocation of resources, teaching, training, and advocacy. All countries are encouraged to collect and publish current data.

'La Vida Normal': Young people adapting to Type 1 diabetes in Bolivia.

OBJECTIVES: To identify challenges and coping strategies of young people with Type 1 diabetes (T1D) and their families in Bolivia through qualitative analysis of interviews with beneficiaries of Centro Vivir con Diabetes (CVCD), a diabetes health center supported by the International Diabetes Federation Life for a Child (LFAC) program. METHODS: Eighteen young people aged 14-33 and at least one caregiver participated in semi-structured interviews in five cities in Bolivia from May to June 2016. Interviews were recorded, transcribed, and analyzed using inductive thematic analysis. RESULTS: Participants described needing guidance at diagnosis and facing stigma in communities. Young people expressed that life with T1D was 'la vida normal' (a normal life), although interpretations of normalcy varied. For some, 'la vida normal' meant resistance to T1D; for others it indicated acceptance. DISCUSSION: Access to interdependent spheres of support allowed young people to form a new normal around T1D. Receiving supplies through the CVCD/LFAC partnership maintained family connection to clinical care, CVCD education helped families share in T1D management, and peer support mitigated stigma for young people. Programs like CVCD that combine supply-based aid with clinical education for whole families, create effective support for young people with T1D in low- and middle-income countries.

Perceived impact of the COVID-19 pandemic on young adults with type 1 diabetes in Rwanda.

INTRODUCTION: data on the impact of COVID-19 on people with type 1 diabetes (T1D) in less resourced countries are limited. Our study was undertaken in Kigali, Rwanda, and aimed to investigate and describe the problems and challenges experienced by young adults with T1D resulting from the early phase of the pandemic. The study further aimed to understand the mechanisms being used to solve problems and overcome challenges, and perceived support needs. METHODS: this was a cross-sectional study, with anonymous data (n=52) collected through use of questionnaire. Participants were registered, and attending or receiving diabetes-related healthcare through the Rwanda Diabetes Association clinic. RESULTS: mean+standard deviation age and T1D duration were 24.0±2.1 and 7.4±3.4 years respectively, with sex distribution unequal (male n=22, 42.3%). Of 43 participants, the COVID-19 pandemic did not significantly affect participants´ access to diabetes management supplies and care. Eight (18.6%) participants experienced difficulties accessing blood glucose testing strips, 13 (30.2%) insulin, and three (7.0%) syringes and pen devices. Thirty-two (74.4%) experienced difficulty in attending standard diabetes healthcare reviews at the clinic setting. Some participants experienced hardship, through a decrease in personal or family income (n=42, 80.8%) and challenges in accessing food (n=34, 65.4%), with thirty (57.7%) participants having decreased meal frequency (p<0.001). CONCLUSION: our research illustrates the indirect effects of measures undertaken to curb the spread of COVID-19 on young adults with T1D in Rwanda. Study findings may help inform actions to mitigate negative impacts on T1D care in other crises.

Access to insulin delivery devices and glycated haemoglobin in lower-income countries.

BACKGROUND: Young people with type 1 diabetes in low-and-middle income countries face many challenges in accessing care, with various essential supplies needed for survival and long-term health. AIM: To study insulin delivery devices and glycated haemoglobin (HbA1c) testing. METHODS: A survey was conducted in 2019 of leading diabetes centres in 41 countries supported by the Life for a Child Program. The survey covered numerous aspects concerning availability and costs at all levels of the health system, local usage patterns and attitudes, obstacles, and other aspects. RESULTS: Thirty-seven countries returned the survey (90.2% response rate). Key findings included: Syringe use was most common (83.1%), followed by insulin pens (16.7%) and pumps (0.2%). 48.6% of public health systems did not provide syringes, even with a co-payment. Use of suboptimal syringe/needle combinations was common. Needles were generally reused in almost all countries (94.3%, n = 35). Aside from donated supplies, there was variable access to HbA1c testing within public health facilities, and, when available, patients often had to cover the cost. Provision was further compromised by numerous problems including stock-outs, and challenges with understanding the test, equipment maintenance, and refrigeration. CONCLUSION: Large gaps exist for adequate access to appropriate insulin delivery devices and HbA1c testing. Public health systems in low-and-middle income countries should increase affordable provision. There are also needs for specific health professional training and diabetes education; elimination of customs duties and taxes; development of inexpensive, robust HbA1c testing methods that do not require refrigeration of testing supplies; differential pricing schemes; and other solutions.

Costs and outcomes of "intermediate" vs "minimal" care for youth-onset type 1 diabetes in six countries.

OBJECTIVE: Data are needed to demonstrate that providing an "intermediate" level of type 1 diabetes (T1D) care is cost-effective compared to "minimal" care in less-resourced countries. We studied these care scenarios in six countries. METHODS: We modeled the complications/costs/mortality/healthy life years (HLYs) associated with "intermediate" care including two blood glucose tests/day (mean HbA1c 9.0% [75 mmol/mol]) in three lower-gross domestic product (GDP) countries (Mali, Tanzania, Pakistan), or three tests/day (mean HbA1c 8.5% [69 mmol/mol]) in three higher-GDP countries (Bolivia, Sri Lanka, Azerbaijan); and compared findings to "minimal" care (mean HbA1c 12.5% [113 mmol/mol]). A discrete time Markov illness-death model with age and calendar-year-dependent transition probabilities was developed, with inputs of 30 years of complications and Standardized Mortality Rate data from the youth cohort in the Pittsburgh Epidemiology of Diabetes Complications Study, background mortality, and costs determined from international and local prices. RESULTS: Cumulative 30 years incidences of complications were much lower for "intermediate care" than "minimal care", for example, for renal failure incidence was 68.1% (HbA1c 12.5%) compared to 3.9% (9%) and 2.4% (8.5%). For Mali, Tanzania, Pakistan, Bolivia, Sri Lanka, and Azerbaijan, 30 years survival was 50.1%/52.7%/76.7%/72.5%/82.8%/89.2% for "intermediate" and 8.5%/10.1%/39.4%/25.8%/45.5%/62.1% for "minimal" care, respectively. The cost of a HLY gained as a % GDP/capita was 141.1%/110.0%/52.3%/41.8%/17.0%/15.6%, respectively. CONCLUSIONS: Marked reductions in complications rates and mortality are achievable with "intermediate" T1D care achieving mean clinic HbA1c of 8.5% to 9% (69-75 mmol/mol). This is also "very cost-effective" in four of six countries according to the WHO "Fair Choices" approach which costs HLYs gained against GDP/capita.

Documenting and visualising progress towards Universal Health Coverage of insulin and blood glucose test strips for people with diabetes.

AIMS: Global governments have committed to achieve Universal Health Coverage (UHC), ensuring access to quality and affordable healthcare for all. This is fundamental for those with type 1 diabetes mellitus, who require daily access to both insulin and blood glucose test strips to survive. This group risks being left behind by global initiatives that fail to consider these particular needs. METHODS: A questionnaire was distributed to key informants in 37 less-resourced countries. Seven high-income countries were also included for comparison. We drew on a WHO framework developed to assess progress towards UHC to create scales on three dimensions: population covered, services provided and direct costs. A fourth dimension, availability, was added. Results were grouped into six patterns and visually displayed with radar graphs. RESULTS: 65% of the less-resourced national health systems provided insulin, with medians of 67% for service provision (equating to Human Regular and NPH), 55% direct costs covered, and 75% availability. Test strips were only provided in 14% of the less-resourced systems, with medians 42% (less than two strips per day), 76%, and 88% respectively. Six patterns of provision were identified. Progress correlated with income level, yet some low-income countries are achieving provision for insulin and test strips for those enrolled in health insurance schemes. CONCLUSION: No less-resourced country had even near-complete coverage for insulin, and coverage was worse for test strips. This study demonstrates the utility of this framework which could be developed as a means of tracking progress in meeting the needs of people with diabetes.

Blood glucose meters and test strips: global market and challenges to access in low-resource settings.

Blood glucose meters and test strips for self-monitoring of blood glucose (SMBG) are often inaccessible to, and infrequently used by, people with diabetes in countries with limited resources for health care. Supplies for measuring blood glucose can also be scarce in health facilities, despite being needed in a myriad of clinical settings at all levels of the health system. Numerous studies and international guidelines emphasise the value of SMBG in diabetes care, particularly in people with type 1 diabetes. In this Review, we assess global access to blood glucose meters and test strips, collating published information on cost, availability, system accuracy, competitive bidding, technological trends, and non-financial barriers. We also provide new information on global market share data and prices, taxes and tariffs, and product availability. Blood glucose meters and test strips should be viewed similarly to essential medicines, with issues of access prioritised by relevant international agencies. Efforts are needed to reduce tariffs and taxes and to create unified global system accuracy requirements and accountable post-marketing evaluations. Preferential pricing arrangements, pooled procurement, and best-purchasing practices could help to lower direct costs. SMBG supplies should also be included in national health insurance schemes. Enhanced diabetes education of health professionals and patients is crucial to ensure effective use of SMBG. Finally, as technology advances for people who can afford new interstitial fluid glucose monitoring systems, blood glucose meters and test strips must remain available and become more affordable in low-resource settings.