Thank You Johnson & Johnson For Helping Sick Kids
I am happy to report to everyone that Johnson & Johnson really does care about children, especially Addi and Cassi and kids suffering from Niemann Pick Type C disease. After I posted my previous blog and contacted Johnson & Johnson’s PR department about our situation with the FDA and obtaining cyclodextrin safety data from their company, they responded over the weekend and offered to help our family. If all corporations were like Johnson & Johnson, the world would be a better place!
Johnson & Johnson’s regulatory contacts agreed to send a letter to the FDA offering to open up relevant portions of their drug master files on cyclodextrin to assist us with Addi and Cassi’s compassionate use treatment case.
They also apologized to me for the response I received from Janssen’s global clinical operations group which has restored my faith in pharmaceutical companies. The challenge now will be to get the FDA to allow us to give Addi and Cassi this potentially life-extending non-toxic sugar compound via IV that could have far reaching implications beyond Niemann Pick Type C disease.