Thank you for your leadership on the Genetic Information Nondiscrimination Act (GINA). This bill will benefit every American and directly improve the lives of those concerned with the misuse of their genetic information in health insurance and employment decisions.
CARES Foundation, Inc. is a 501(c)3 non-profit membership organization dedicated to improving the lives of those affected by Congenital Adrenal Hyperplasia (CAH). We represent over 2,000 individuals and families affected by CAH and 500 healthcare and public health professionals in all 50 states.
CAH is a family of congenital disorders affecting the adrenal gland. In its severest form CAH can result in life-threatening imbalances in salt and hormone levels leading to adrenal crisis, and if not diagnosed quickly, death. The effects of milder forms of CAH include severe acne, hair loss, excessive facial hair in women, short stature, anxiety and depression, and infertility in both males and females. Once detected, these children merely need simple and inexpensive medications to live a normal life. As an autosomal recessive, inherited disease the most effective route to diagnosis and successful management of CAH is through genetic testing. Moreover, diagnosis implies the existence of genetic information.
The current lack of federal legal protections against the misuse of genetic information has restricted individuals' access to health information and clinical trials. Fear of the misuse of genetic information limits access to genetic tests. Refusal to utilize effective genetic tests hinders the ability of individuals to learn important medical information, which they could proactively use to manage their health. Fear of discrimination also causes a large number of people to opt out of clinical trials. This lack of participation in research has a negative impact on researchers, clinicians, and industry, slowing the research and development process for targeted drugs and treatments. In order to fully promote personalized medicine and the use of genetic information in healthcare, we must pass GINA legislation.
Thank you once again for your foresight and bold leadership on this issue. We look forward to working with you to have the GINA legislation pass swiftly.
