Epidermolysis bullosa or EB is a genetic condition that causes the skin to be fragile and blister easily. Recently a breakthrough therapy for this rare skin disorder from Scioderm has shown promising results.
The CEO of Scioderm, Robert Ryan has spent more than two years approaching capitalists with a strategy for treating this rare skin disease and finally raised $16 million to continue the experimental breakthrough treatment. The key strategy is the level of insurance cover. Ryan said the average insurance payment for medications to treat this rare disease is $60,000 a year per patient. He justified the cost by saying it is cheaper than the alternative, numerous bandaging, pain killers and potential hospital visits that are needed to deal with the skin wounds that proved to be resistant to healing.
Robert Ryan has continuously showed images of children who look like burn victims, covered in blisters, with open and festering sores. The blistering primarily affects the hands and feet in mild cases. Severe cases of this widespread blistering can lead to infections and other medical problems EB may be life threatening in infancy.
One can hardly notice the little fingers. Often these children are referred to as ‘butterfly children’ because of their fragile skin and many do not live past childhood.
The experimental treatment by Scioderm for Epidermolysis bullosa, or EB, the rare skin condition, which has no known cure is generating attention from nonprofit organizations dedicated to EB and the Research Association of America. The impact of this product has received a breakthrough designation form the US Food and Drug Administration and this would indeed expedite the development of this product, as the cream has demonstrated the substantial improvement of this condition.
Scioderm have provisionally called the cream SK-101 and this cream causes the wounds to heal quicker than normally. It does not treat the underlying genetic cause of the disorder, which prevents the skin layers from binding property and resulting in a fragile skin that causes excruciating pain, eating complications and unbearable itching.
Reported EB cases in America are estimated at 40,000, some have tried genetic therapy such as bone marrow transplants but only show a limited success. Many of the victims are bandaged to cover their wounds in public to prevent exposure and further tearing. EB remains a reclusive disease and not widely reported on thus few people know about the horrors of the disorder. Not all-public contact with EB patients need be repulsive.
The company Scioderm currently has six people on its team, and is planning to conduct another trial on 28 patients this summer. The third and final test planned for nearly 100 patients is expected to be concluded next year. The product will only be sold commercially after these final tests have been conducted.
Definite quality of life changes for these young children through the breakthrough therapy of this rare skin disorder by the company Scioderm, and their determination to bring positive healing change to a serious medical need that so few know about.
Written by Laura Oneale