On May 20th the world remembers the 1st recorded, controlled testing of an intervention to save lives. This was in 1747 when a British naval Doctor Dr James Lind tested various potions to try and cure Scurvy- a disease that killed many sailors on long sea voyages. His tests revealed that the inclusion of citrus fruit in their diet did in fact save lives and we now know that Vitamin C prevents scurvy.
This method of testing and observation paid huge dividends when the Covid pandemic threatened the world. The tests conducted with thousands of participants allowed the health authorities to test vaccines and identify an effective tool against the virus.
Normally clinical trials involve very small groups of people and can take many years to complete. There are 3 phases with very strict oversight by controlling bodies such as the Federal Drug Agency in America and the European Medicines Association. In South Africa clinical trials are controlled by the Department of National Health.
Retina South Africa was selected to participate in an international clinical trial to test a drug to slow vision loss in Stargardt Disease which affects 1 in 10 000 in the population. This genetic condition usually starts in children and young adults robbing them of their precious central vision and most often occurs in families with no recorded history of blindness. The intervention used was a drug called Emixustat that did show some effect in very young trial participants but not enough overall to justify registration and commercialisation of the drug. This came as a huge disappointment to Melanie N, a trial participant, but she still supports the process:
“I soon realized that this is how medical research works – there is a process of discovery, testing, re-testing, and going back to the drawing board repeatedly. I also realized that this trial was a step in the right direction, something positive to participate in, something that could potentially help future generations of young children and teens diagnosed with Stargardt disease. This made every long trip to the eye hospital, all the repeated eye tests, and the daily reminder to take my pills, worthwhile.”
Retina South Africa has an extensive data base of people with all forms of vision loss such as Diabetic Retinopathy, Age Related Macular Degeneration, Retinitis Pigmentosa. Stargardt Disease, and Usher Syndrome- Deaf Blindness.
Claudette Medefindt, National Secretary of Retina South Africa recommends that all South Africans affected by retinal vision loss should register with Retina South Africa.
“There are dozens of international clinical trials in progress, and we are working with researchers to bring more of these promising trials to South Africa. People with a genetic retinal condition must have a genetic test to determine if they are eligible for gene specific trials and imminent treatments.” Medefindt said.
Retina South Africa provides all the necessary advice and information on treatments, coping skills and accessible technology to assist people living with retinal vision loss. Contact them via their website www.retinasa.org.za.
Story Submitted: Retina SA
