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The safety and efficacy of Endari were studied in a randomized trial of patients ages five to 58 years old with sickle cell disease who had two or more painful crises within the 12 months prior to enrollment in the trial. https://gov/pmc/articles/PMC3560868/ Making Advances Against Sickle Cell Disease By: Patricia Oneal, M. Ghana and other countries in West and Central Africa have the highest prevalence of SCD and related disorders in the world.
Patients were assigned randomly to treatment with Endari or placebo, and the effect of treatment was evaluated over 48 weeks. In Ghana about 2% of newborns have sickle cell disease which translates to about 16,000 to 18,000 children born annually with SCD, with 20% – 25 % born as trait or carriers.
This may reflect a lack of access to high-quality comprehensive care for adults with SCD in the US. Gifty Tina Naa Ayeley Mensah Corresponding Author: Email: [email protected]
In 2017 two notable advances happened: In July the FDA approved Endari or L-glutamine oral powder to Emmaus Medical Inc for use as a preventative in sickle cell patients 5 years and older. Website Sickle Cell Disease (SCD) is the most common serious genetic disease in Africa.
Many stem cell transplants have been curative with a 90% survival but only 18% of eligible patients have an acceptable match.
The multicenter trials of hydroxyurea in the 1980s and 90s as preventive therapy reduced the need for blood transfusions, pain events and hospitalizations. This was approved for medical use by the FDA in 1998.
By the early 1990s, the Cooperative Study of Sickle Cell Disease estimated a median life expectancy of those with sickle cell anemia, the most severe form of the disease, of 42 years of age for males and 48 years of age for females. https://gov/fdavoice/index.php/2017/09/making-advances-against-sickle-cell-disease/# L-glutamine oral powder https://gov/Drugs/Information On Drugs/Approved Drugs/ucm566097N Engl J Med 2017; 38-855 March 2, 2017
In 2005 Lanzkron et al confirmed these findings of a significant decrease in mortality for children with SCD, but mortality for adults increased during the same time period. query=featured_home Sickle Cell Disease Update form the ASH meeting in December 27, 2017 cell patients fight uphill battle for research, treatment — and compassion Jenny Gold — Kaiser Health News December 26, 2017 https:// Sickle Cell Disease Advocacy In Ghana: Experiences From An African Country.
Forty years later, in 2017, life expectancy in the US has grown with identification of patients with newborn screening programs, prophylactic penicillin from birth to age six, the advent of the pneumococcal vaccine, transcranial doppler ultrasound screening with transfusions to prevent stroke, chest syndrome recognition and prevention, comprehensive pediatric care and hydroxyurea. Jude Children’s Research Hospital in Memphis TN had leukemia and sickle cell disease. Jude doctor performed a bone marrow transplant using marrow donated from the patient’s brother.
The patient was cured of both leukemia and sickle cell disease.
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