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Access to fludrocortisone and to hydrocortisone in children with congenital adrenal hyperplasia in the WHO Eastern Mediterranean Region: it takes a village…

Congenital adrenal hyperplasia (CAH), if untreated, carries high morbidity and mortality. A higher incidence of CAH is expected in countries where consanguinity is common, such as in the countries of the WHO Eastern Mediterranean Region (EMRO). CAH is managed through lifelong treatment with fludroco...

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Autores principales: Rowlands, Amanda, Deeb, Asma, Ladjouze, Asmahane, Hamza, Rasha T, Musa, Salwa A, Raza, Jamal, Jennane, Farida, Abu-Libdeh, Abdulsalam, Chanoine, Jean-Pierre
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BMJ Publishing Group 2021
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8532553/
https://www.ncbi.nlm.nih.gov/pubmed/34675026
http://dx.doi.org/10.1136/bmjgh-2021-007195
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author Rowlands, Amanda
Deeb, Asma
Ladjouze, Asmahane
Hamza, Rasha T
Musa, Salwa A
Raza, Jamal
Jennane, Farida
Abu-Libdeh, Abdulsalam
Chanoine, Jean-Pierre
author_facet Rowlands, Amanda
Deeb, Asma
Ladjouze, Asmahane
Hamza, Rasha T
Musa, Salwa A
Raza, Jamal
Jennane, Farida
Abu-Libdeh, Abdulsalam
Chanoine, Jean-Pierre
author_sort Rowlands, Amanda
collection PubMed
description Congenital adrenal hyperplasia (CAH), if untreated, carries high morbidity and mortality. A higher incidence of CAH is expected in countries where consanguinity is common, such as in the countries of the WHO Eastern Mediterranean Region (EMRO). CAH is managed through lifelong treatment with fludrocortisone and hydrocortisone. In this analysis, performed in the 22 EMRO countries and territories plus Algeria, we review which countries offer a neonatal screening programme for CAH and describe the barriers and opportunities to access oral fludrocortisone and oral and injectable hydrocortisone. Neonatal CAH screening was only available nationally in Qatar, Kuwait and partially in Lebanon and Saudi Arabia. We reviewed the national lists of essential medicines (NEMLs) and found that 13/23 (57%) countries included fludrocortisone and 18/23 (78%) included oral hydrocortisone. Fludrocortisone was not included by any of the low-income countries and oral hydrocortisone was only included by one low-income country. We then contacted paediatric endocrinologists in each country to assess perceived availability of these medicines. Overall, there was a relatively good consistency between inclusion of fludrocortisone and hydrocortisone in the NEML and their actual availability in a country. We propose several mechanisms to improve access, including prequalification by the WHO, a common registration process for groups of countries, pooled procurement, working with local pharmaceutical companies, special access status for medicines not yet registered in a country and compounding. We suggest that access to medicines requires a collaboration between health professionals, families of patients, health authorities, pharmaceutical companies and the WHO.
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spelling pubmed-85325532021-11-04 Access to fludrocortisone and to hydrocortisone in children with congenital adrenal hyperplasia in the WHO Eastern Mediterranean Region: it takes a village… Rowlands, Amanda Deeb, Asma Ladjouze, Asmahane Hamza, Rasha T Musa, Salwa A Raza, Jamal Jennane, Farida Abu-Libdeh, Abdulsalam Chanoine, Jean-Pierre BMJ Glob Health Analysis Congenital adrenal hyperplasia (CAH), if untreated, carries high morbidity and mortality. A higher incidence of CAH is expected in countries where consanguinity is common, such as in the countries of the WHO Eastern Mediterranean Region (EMRO). CAH is managed through lifelong treatment with fludrocortisone and hydrocortisone. In this analysis, performed in the 22 EMRO countries and territories plus Algeria, we review which countries offer a neonatal screening programme for CAH and describe the barriers and opportunities to access oral fludrocortisone and oral and injectable hydrocortisone. Neonatal CAH screening was only available nationally in Qatar, Kuwait and partially in Lebanon and Saudi Arabia. We reviewed the national lists of essential medicines (NEMLs) and found that 13/23 (57%) countries included fludrocortisone and 18/23 (78%) included oral hydrocortisone. Fludrocortisone was not included by any of the low-income countries and oral hydrocortisone was only included by one low-income country. We then contacted paediatric endocrinologists in each country to assess perceived availability of these medicines. Overall, there was a relatively good consistency between inclusion of fludrocortisone and hydrocortisone in the NEML and their actual availability in a country. We propose several mechanisms to improve access, including prequalification by the WHO, a common registration process for groups of countries, pooled procurement, working with local pharmaceutical companies, special access status for medicines not yet registered in a country and compounding. We suggest that access to medicines requires a collaboration between health professionals, families of patients, health authorities, pharmaceutical companies and the WHO. BMJ Publishing Group 2021-10-21 /pmc/articles/PMC8532553/ /pubmed/34675026 http://dx.doi.org/10.1136/bmjgh-2021-007195 Text en © Author(s) (or their employer(s)) 2021. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ. https://creativecommons.org/licenses/by-nc/4.0/This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/ (https://creativecommons.org/licenses/by-nc/4.0/) .
spellingShingle Analysis
Rowlands, Amanda
Deeb, Asma
Ladjouze, Asmahane
Hamza, Rasha T
Musa, Salwa A
Raza, Jamal
Jennane, Farida
Abu-Libdeh, Abdulsalam
Chanoine, Jean-Pierre
Access to fludrocortisone and to hydrocortisone in children with congenital adrenal hyperplasia in the WHO Eastern Mediterranean Region: it takes a village…
title Access to fludrocortisone and to hydrocortisone in children with congenital adrenal hyperplasia in the WHO Eastern Mediterranean Region: it takes a village…
title_full Access to fludrocortisone and to hydrocortisone in children with congenital adrenal hyperplasia in the WHO Eastern Mediterranean Region: it takes a village…
title_fullStr Access to fludrocortisone and to hydrocortisone in children with congenital adrenal hyperplasia in the WHO Eastern Mediterranean Region: it takes a village…
title_full_unstemmed Access to fludrocortisone and to hydrocortisone in children with congenital adrenal hyperplasia in the WHO Eastern Mediterranean Region: it takes a village…
title_short Access to fludrocortisone and to hydrocortisone in children with congenital adrenal hyperplasia in the WHO Eastern Mediterranean Region: it takes a village…
title_sort access to fludrocortisone and to hydrocortisone in children with congenital adrenal hyperplasia in the who eastern mediterranean region: it takes a village…
topic Analysis
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8532553/
https://www.ncbi.nlm.nih.gov/pubmed/34675026
http://dx.doi.org/10.1136/bmjgh-2021-007195
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