Recent events surrounding the Justina Pellitier case have left the mito community understandably upset, frustrated and angry. Positively, these events have led to the creation of a Mitoaction task force attempting to shape future policy and assist families dealing with similar situations. At the recent UMDF symposium a parent session addressed this issue and offered some insight into why these cases have increased and have become more problematic. Mito patients and families seem to be targeted because mito patients have multiple system medical problems in a non-predictable pattern, there is a serious paucity of mitochondrial experts, there is a persistence of misconceptions about mito to include one must have elevated lactate to have the disorder, we face a lack of secondary care providers to take on complex cases, caregivers in the inpatient hospital system are on a continuously rotating schedule resulting in poor understanding of patients, most academic practices are under extreme stress due to poor reimbursement for services, there is poor communication between providers and egos gets in the way because mito families are a very savvy patient population often knowing more about the disease than the providers. Solutions? There are as of yet no easy solutions but maintaining a copy of your records at hand helps you provide the facts quickly and easily about your case. Education of nurses, doctors, teachers and social workers may help them understand the complexities of these patients and lead to less knee jerk reactions and accusations based on the theory that" since I don't understand it, it cannot exist". And, clearly, reformation of the child protection system is needed given that the incidence of mito disease is far more common than that of child medical abuse.
Fran Kendall, M.D.
This post is not meant to be a recommendation or a substitute for professional advice and services rendered by qualified doctors, allied medical personnel, and other professional services. The responsibility for any use of this information, or for proper medical treatment, rests with you.