Fighting back against Sickle Cell in Cameroon - Will you Join?

By Seth Vignes - Culled from http://www.gofundme.com/SCDinCameroon

Bringing a Novel, Low-Cost Diagnostic Test for Sickle Cell Disease to Bamenda, Cameroon

Each year over 200,000 infants are born with Sickle Cell Disease (SCD) on the African continent. A vast majority of them are not properly diagnosed at birth, or during their lifetime, because of the prohibitive cost of laboratory tests required for a definitive diagnosis (e.g. hemoglobin electrophoresis or genetic screening). Within West Africa, 9% of these infants will die before reaching adulthood due to complications arising from their disease (primarily infections) – most of these deaths can be prevented through administration of prophylactic antibiotics, folic acid, fluid therapy and lifestyle adjustments, if SCD is properly diagnosed early in life.

My name is Seth Vignes and I attend Tulane University as a graduating senior in Biomedical Engineering. For nearly a year I have been working in the laboratory of Dr. Sergey Shevkoplyas at Tulane University ( http://www.tulane.edu/~shevkop/) on the development of a novel low-cost, paper-based assay for SCD diagnostics in resource-limited settings. Our paper-based SCD assay uses a finger-prick volume of patients’ blood, paper, and a solution of a few chemicals to tell if someone has Sickle Cell Disease, Sickle Cell Trait, or if they are healthy. The assay is simple, quick, reliable, disposable, and has the potential to be readily accessible to persons in remote rural settings. Importantly, the components of our paper-based SCD test cost only $0.01 (1 US cent) per test, compared to the hemoglobin electrophoresis (the current standard of care in the US) at >$125 per test. (For more information about this novel assay, see our recent publication in Lab on a Chip: http://pubs.rsc.org/en/content/articlelanding/2013/lc/c3lc41302k)

I would like your help bringing our low-cots paper-based SCD test to Bamenda, Cameroon where the Father John Kolkmann (FJK) Sickle Cell Foundation is sponsoring me to conduct a clinical study using the test within the local population of SCD patients. Dr. Shevkoplyas will provide the scientific materials and equipment. The FJK Sickle Cell Foundation will provide internal transportation and lodging, as well as a dedicated team of local physicians. I need your help to raise $2,500 to purchase my plane ticket from the United States to Cameroon.

According to Dr. Michael Neba, Executive Coordinator of the FJK Sickle Cell Foundation, 30% of the 400 known SCD cases within the local clinic were diagnosed between the ages of 8 and 10 years, a time when patients have already suffered physical and mental consequences of their disease for years. Parents of children with SCD and people in the community tell of very young children they have buried, without any hospital intervention. The description of these children’s suffering points to SCD. These are deaths that would have been prevented had there been a lower-cost alternative to current diagnostics available. There are known cases of suspected patients who have been turned away from laboratories untested because they could not afford the cost (about $12.00 per test). “We see a potential domino effect from implementing this novel low-cost diagnostic test”, says Dr. Neba. “Early interventions that reduce the risk of complications from the disease, children living a health and normal life, returning to the classroom, reduced hospitalizations, and a sense of peace and security in the family and community. The beauty of it all is that we don’t have to wait for the community to come to the clinic for diagnosis. The clinic is coming into the community with a rare unique characteristic combination: affordable, available and accessible.”

The Father John Kolkmann Foundation (FJK) is a non-profit organization based in Bamenda, Cameroon which seeks to ensure early detection, proper management, and treatment of Sickle Cell Disease within the Cameroonian population. Their mission statement calls for the improvement of the quality of life for patients by providing outreach, awareness, case management, screening, nutrition, and counseling services to their community. Their website provides useful information on their background and work: http://jkolkman.org/

Currently, our team is working on the IRB approval process. We have verbal and written commitments from both parties involved and are tentatively scheduling the trip for late July 2013. I would love your support in this endeavor and hope you will join me in backing a great cause for the Sickle Cell Disease population of Bamenda, Cameroon.