Objectives Sickle cell disease (SCD) is an inherited multisystem disorder with complications starting in the first year of life. Newborn screening (NBS) can identify infants with SCD and is associated with decreased morbidity and mortality. Variation in availability of NBS in Canada, and lack of standardized screening for immigrant children, may lead to delayed diagnosis. Methods This was a retrospective cohort study of 126 children aged 0–18 years with SCD registered with the SCD clinic at the Alberta Children’s Hospital between January 2003 and January 2018, prior to province-wide universal NBS for SCD. Patient demographic information, circumstances of diagnosis, and other contextual information were collected from patient health records. Descriptive statistics were used to summarize data, with Mood’s median test used to compare medians between groups. Results Forty-three (35%) patients were born in Alberta. Patients were mostly (95.3%) of African descent. Of patients born in Alberta, 63% (26/43) were diagnosed at >12 months of age, with a median age at diagnosis of 18 months (IQR = 4–39). This was significantly older (P < 0.001) than children born in the USA or in Canadian provinces with SCD NBS programs, where the median age at diagnosis was zero months (N = 36). Of the 42% of patients born outside North America, 64% were diagnosed following an acute complication. Conclusions This study highlights the importance of NBS for early detection and management of SCD, and the importance of screening at-risk immigrants who may not have received NBS for SCD.
Objectives The Interim Federal Health Program (IFHP) provides temporary healthcare coverage to refugees and refugee claimants. Previous research demonstrates that paediatric healthcare providers poorly utilize the IFHP, with low registration rates and limited understanding of the program. The objective of this study was to examine paediatric provider use of IFHP-covered supplemental benefits, and their experience with trying to access these benefits. Methods A one-time survey was administered via the Canadian Paediatric Surveillance Program in February 2020. Of those who had provided care to IFHP-eligible patients, descriptive tables and statistics were created looking at provider demographics, and experience using the IFHP supplemental benefits. A multinomial logistic regression was built to look at provider characteristics associated with trying to access supplemental benefits. Results Of the 2,753 physicians surveyed, there were 1,006 respondents (general paediatricians and subspecialists). Of the respondents, 526 had recently provided care to IFHP-eligible patients. Just over 30% of those who had recently provided care did not access supplemental benefits as they did not know they were covered by the IFHP. Of those who had tried to access supplemental benefits, over 80% described their experience as difficult, or very difficult. Conclusions Paediatric providers have a poor understanding of IFHP-covered supplemental benefits, which is cited as a reason for not trying to access supplemental benefits. Of those who do try to access these benefits, they describe the process as difficult. Efforts should be made to improve provider knowledge and streamline the process to improve access to healthcare for refugee children and youth.
OBJECTIVES: Achieving fair pricing and ensuring long-term sustainability of health care systems and access for patients is one of the biggest challenges for health &pharmaceutical systems in Egypt. To describe the current pricing regulatory and reimbursement framework and position of innovative drugs in main disease areas. METHODS: A variety of sources informed the evidence, including a broad-ranging literature review of local data of Pricing department &PE unit in Ministry of Health. The primary research and data component is based on direct input from decision makers (governmental, Private sectors, and pharma). A detailed questionnaire was developed and issued to all participants. which addressed a number of key questions, including:Does a country-specific definition of high-cost or innovative medicines exist? What are the key challenges to the funding these medicines? What the need actions to improve the pricing and reimbursement process? Are there specific pricing policies for innovative medicines compared to ordinary medicines? and Which requirements needed for the assessment? RESULTS: The key disease areas are:1-diabetes, 2-cancer, 3-rheumatoid arthritis, 4-hepatitis C, 5-orphan conditions respectively. These treatments represent examples of innovative medicines which carry considerable implications for the country' health budgets because they can be considered either "high volume" for treating many patients or "high cost" because of the price of a single course of treatment. The Current regulations require comparability for quality, efficacy, and safety assessments. No specific innovation regulations are adopted for pricing. There is a gap in introduction and/or management of these medicines by careful handling to ensure that access and equity are maintained, along with sustainable financing. till now, the main instrument influencing the market entry prices in Egypt is ERP. CONCLUSIONS: The conceded recommendations were: adoption a further initiatives/policies to better manage the entry of new medicines. MCDA should be designed to study the criteria critical to uptake of innovative drugs.
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