Title:
Access to Orphan Drugs in Guatemala : A Gap Analysis from an International Perspective
Authors:
Cabrera-Sybesma, Yolanda
Year:
2015
PAGE:
ix, 44
Language:
En
Subject:
Health and Poverty
Keywords:
Orphan Drugs, Rare Diseases, Access to Orphan Drugs, Health System, Guatemala
Abstract:
Background: For an estimated one million patients with rare diseases (RDs), access to orphan drugs (ODs) represents a major public health problem just as it has been for most low-middle income countries. Patient groups have raised concerns as they struggle with huge challenges to be treated. However, the health authorities are not yet aware of the burden and access to ODs is not a priority. Objective: To identify, describe and analyze access to ODs in Guatemala. Methodology: A literature review was conducted by adapting the WHO Equitable Access to Essential Medicines Framework. Findings: Rational use of ODs in Guatemala is very limited due to the absence of a national body to coordinate OD use, compounded by lack of an essential medicines list and RDs clinical treatment guidelines. Affordability of ODs globally as well as in Guatemala is still a huge challenge due to very high prices and the long-term nature of the diseases. Moreover, while sustainable financing of essential medicines is already under pressure, financing ODs is even more difficult. ODs are not covered in existing payment schemes and the current health and supply system fails to promote OD access in Guatemala. Conclusion and Recommendations: Guatemala has not recognized RDs as a public health burden and the essential basic foundations for better access to ODs is lacking. The mentioned gaps that hinder access to orphan drugs should be addressed. Moreover, I recommend that RDs be a priority within Guatemala’s Health System and further research in the area of ODs and RDs is urgently needed.
Organization:
KIT - Royal Tropical Institute
,
VU - Vrije Universiteit Amsterdam
Institute:
KIT (Royal Tropical Institute)
Department:
Development, Policy and Practice
Country:
United States of America, USA
Region:
Central America
Training:
Master of Public Health / International Course in Health Development (MPH/ICHD)
Category:
Research
Right:
© 2015 Cabrera-Sybesma
Document type:
Thesis/dissertation
File:
0jMvZDx7JO_20161024115759562.pdf