Reasons Medical Confidentiality is important to individuals with NF2, while there may be more issues then these, medical confidentiality is important to any of us with NF2 because:

1. Human Rights: Dignity towards privacy to not share your problems with everyone. If you shared your medical information with a doctor your doctor would be required to keep your medical information confidential under the HIPAA agreement.
2. Respect: You have friends and / or family you might not want to know you have a serious potentially life threatening illness to and therefore not want to know you have NF2 and definitely not know your on a chemotherapy type medication. Sometimes it is a matter of who you want to tell and when your ready to tell others about your condition, as well as the full extent you wish to share on how bad your condition might be.
3. Work: A potential employer might not hire you if they know about your condition.
4. Life Insurance: There are health conditions that will exclude you from being able to ever get life insurance.
5. Health Insurance: If your health insurance company finds out, they might decide all your medical issues are part of a preexisting condition and make it hard to get them to pay your medical bills. Issues may well be extended to family/offspring, even if they have not had any kind of symptom or genetic test.

To learn about Doctor Patient Confidentiality, what you can expect from your doctors on privacy and HAPAA - Health Insurance Portability and Accountability Act, visit: U.S. Department of Health & Human Services: Health Information Privacy

NF2 NYC Support Group, New York
Email: Lori Davila at lori@nf2nycsupport.org
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