By Keith S. Wexler, MBA,
Facilitator of Information, Maternal Fetal Medicine, Prenatal Diagnosis and Biotech Consultant, GENASSIST™, Inc.
I have learned over the past 25 years working for a medical genetics company that when a patient(s) gets a test result (i.e. his/her baby has been diagnosed with Down Syndrome, his/her father was recently diagnosed with Lou Gehrig’s (ALS) disease or the patient is told she/he has breast cancer or prostate cancer respectively), the patient(s) just wants information and they want it now!
I am a Facilitator of Information: Timely Information Optimizes Outcome
On an average day, we get between 50 and 100 “cold calls” from patients all over the country and lately from all over the world, that are being told that they will have to wait weeks or months before they will be able to meet with a “specialist” (i.e. Disease Specialist, Geneticist, Genetic Counselor, Medical Doctor etc..) who will talk with them or help them gather enough information to pave an educated road map for their care and/or treatment.
A few years ago at a national meeting, one of the speakers when asked why it is taking on average 7 to 9 months to get in and been seen by a “genetic counselor”, the reply was “There is no such thing as a genetic emergency”.
However, as more tests become available and more patients seek testing, there is an obvious logjam that is taking place due to the ever increasing volume of patients desiring information and “interpretation” of test results and the finite number of healthcare providers who are able to meet with patients to discuss test results.
This “Take a Number and Get in Line Model” is what led to the creation of this website.
On October 1, 2015 the World Health Organization and the Center for Disease Control released International Classification of Diseases (ICD-10) which is designed to “enable greater specificity in identifying health conditions”1 which some estimates put at over 12,000 disease categories.
This website is intended to create a global community of patients and their families, healthcare providers, biotech companies, insurance companies etc…to encourage the sharing of information.
I encourage any and all to join our global village.