In light of a recent nursing symposium in Israel, I thought I would review the rights and specific navigational needs of women who are carriers of the BRCA mutation that increase risk breast and/or ovarian cancer.
Approximately 5% of all breast cancers are caused by a mutation in the BRCA1 or 2 gene. However, if you have the gene, which approximately 2% of Ashkenazi Jewish women have, then your risk escalates to about 60% to develop breast cancer and about 35% to develop ovarian cancer, much higher than the risk for a woman without these gene mutations.
These statistics translate into several thousand healthy women living in Israel at any given time, who are carriers of this mutation and must decide how they want to proceed with their health management choices.
The Israel Ministry of Health guidelines propose that a BRCA carrier has an annual MRI screening from 25-29 years of age, annual mammography from age 30, an oophorectomy [removing one’s ovaries] by age 40, or when childbearing is complete. Risk-reducing mastectomy [surgical removal of one’s breast tissue] is also suggested.
This is a complicated decision-making process for anyone, and women who know they are carriers should make sure that they are associated with a clinic that will offer them good counsel, advice, and support in whatever decision they deem best, given their particular life situation. For a list of existing clinics (in Hebrew), click here.
In addition, some percentage of carriers also choose to undergo preimplantation genetic diagnosis (PGD) together with IVF (in vitro fertilization) to prevent the mutation from being passed on to their children.
RIGHTS OF CARRIERS
Is genetic carrier status considered a pre-existing condition?
A healthy woman in her early 40’s was tested for the BRCA 1 gene. She was a carrier and decided to undergo prophylactic mastectomy. As this was a medical, not cosmetic decision, she requested that her private insurance cover the cost of the private surgeon. She was denied on the basis that this was considered a pre-existing condition and not covered by her insurance.
Private insurance companies may deny anyone who has a previous illness, medical condition, disability or congenital deformity, and the patient signs on the medical release form guaranteeing that all relevant medical information be given to the insurance company.
However, genetic information is not in the same category. A person reserves the right to keep all of their genetic information secret and a separate medical information release form must be signed specifically about the person’s genetic information. The patient is fully entitled to keep genetic information private and is NOT obligated to report it to any governing body.
In 2000, the genetic information act was passed to protect the rights of the patient and to ensure that s/he would not be discriminated against in terms of treatment, participation in medical research, or preventative care. The law does not distinguish between a gene that may cause illness or an existing illness determined through gene status. A man or woman who is a BRCA 1 or 2 mutation carrier has no obligation to report this information to his/her employee or even to her own children if she feels that she will be stigmatized or treated differently.
All this is to say, that unless the woman signed on a specific medical release form for genetic information, the insurance company violated the law by denying her coverage under their policy.
In the words of one carrier, “Having a family history of breast/ovarian cancer impacts on us in many unfortunate ways…. The powerful legacy we’ve inherited affects our self-esteem, our sexuality, our fertility, our career choices, our relationships with our husbands and children- virtually every aspect of our lives.” Let’s make sure we protect everyone’s medical rights.
Thanks to Dr. Penina Mor of the Noga Clinic in Shaare Tzedek Medical Center for sharing this important information with our Health Advize community.