Announcing the Access to Preventative Care Survey

Almost every week, I talk to someone who is dealing with the Brca 1 gene, which predisposes them to developing breast cancer.  At The Pink Fund, one of our bloggers, Amy Rauch Neilson, has the gene,(  as does one of our volunteers.    While they cannot be denied medical treatment, because they learned of this genetic mutation after their diagnosis, they have expressed  concern for family members, if tested and found positive, while currently cancer free, will be denied the right to medical insurance and therefore care.

Read what Cancer Legal Resource Center’s Anya Prince, Esq., take on this and FILL OUT THE IMPORTANT SURVEY LINKED BELOW.  Your participation can help to ensure quality medical care for individuals predisposed to cancer because of this genetic mutation.

Heightened Risk

Recent increases in the use of genetic testing in the cancer realm have helped many individuals to understand whether they have a heightened risk of developing the disease in the future.  This knowledge helps individuals to create a plan for preventative care to decrease their risk of developing cancer.  However, the goals and promises of genetic testing will not be met if individuals cannot gain access to preventative services after learning of a heightened risk.  The laws governing genetic information are recent and are often attempting to catch up to rapidly changing science.

Gaps in the System

For this reason, the Cancer Legal Resource Center (CLRC) and Facing Our Risk of Cancer Empowered (FORCE) are conducting a survey about individuals’ experiences with insurance coverage of preventative services, specifically for individuals with a genetic predisposition for cancer.  The goal of the survey is to find any gaps in the system that make it difficult for individuals with a genetic predisposition for cancer to gain access to preventative care.  Based on the results, we plan to create strategies for changes to the legal landscape to ensure the best access to preventative care for individuals.

This survey is intended to gather information about access to preventative services given a genetic predisposition to, or family history of, cancer.  It is not seeking information about insurance coverage of treatment after a cancer diagnosis.

Your Experience Counts

We would like to hear about your experience with insurance coverage, including private insurance, employer-sponsored health plans, Medicare, and Medicaid in the preventative care context.  We are interested in learning about your experience in order to ensure that individuals with a genetic predisposition for cancer receive the best possible care.

To complete the survey, please visit:

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