Journal of Genetic Syndromes & Gene Therapy
Open Access
ISSN: ISSN: 2157-7412
ISSN: ISSN: 2157-7412
Rizwan Arshad and Shawana Khan
Punjab Public Health Agency, Pakistan
Posters & Accepted Abstracts: J Genet Syndr Gene Ther
Statement of the Problem: In Pakistan, the rare disease reported patients are facing problems in access to quality and affordable medicines. Due to expensive treatments some patient�??s lost their life due to inadequate support from the authorities, pharma industries, and health professionals or if some manage to afford they are unable to get the quality medicines for their rare diseases. The main challenge in Pakistan is that medical science becomes helpless many times against a rare disease and the situation become horrendous both for the patients and their family members. There is nothing more agonizing for a patient and his family than to know that the disease he is suffering from has no known cure if cure exists than treatment cost would certainly don�??t save the lives due to patients nonaffordability. Is the medical world really helpless in such cases or is it because health professionals are not armed to combat these rare diseases? The purpose of this study is to answer such questions. The main dilemma here is also to find the quality of orphan drugs according to regulations of authorities. So the need has been arisen through the existing scenario of timely access to orphan drugs in affordable prices within quality control measures and through proper regulatory channels. Findings: The global health network access model has formed in result to the factors of the study which facilitate patients in accessing medicines which are not registered or unavailable in the home country. This model used their network for legal importation through quality control measures of innovative life-saving medicines which are available in developed countries, such life-saving medicines are typically difficult to access in Pakistan where market authorization has not been obtained. Conclusion & Significance: This paper showed up the holistic approach of patients accessing rare diseases treatments through global health access model and finding their treatment solutions through proper workflows with global collaborations.
E-mail: rizwan.khan@healthservices.com.pk