FORCE and Advocacy
by Sue Friedman
Here is a recap of our recent advocacy activity as of Spring 2010. For more information see our Current Action Items.
FORCE was part of successful efforts to pass the Genetic Information Nondiscrimination Act (GINA) to prohibit genetic discrimination by health insurers and employers. In collaboration with researchers from the Ohio State University Cancer Center and Stamford University, we developed a survey, which is still open, on consumer knowledge about genetic discrimination and GINA. We presented preliminary findings at the 2009 American Society of Human Genetics Annual Meeting, including the following trends identified from the 805 responses received at that time:
- 19% thought there were no laws and 41% were uncertain about existing laws to prevent genetic discrimination by health insurance companies.
- 23% thought there were no laws and 60% were uncertain about existing laws to prevent genetic discrimination by employers.
- 63% expressed worry about discrimination by insurance companies and 28% indicated they were concerned about discrimination by employers.
- 44% who underwent genetic testing indicated that their health care providers did not discuss discrimination or legal protections.
- 39% had never heard about GINA prior to the survey.
We found the following:
- Gaps exist in consumer and health care provider knowledge of genetic discrimination protections.
- People who know about GINA still worry about discrimination.
- More resources are needed to educate people about genetic discrimination and GINA.
USPSTF Breast Screening Guideline Changes
In November the United States Preventive Services Task Force published changes to breast cancer screening guidelines. They recommended:
- Against screening mammography for women ages 40–49.
- Performing biennial rather than annual screening mammography for women over 50.
- Against teaching or performing Breast Self-Exam (BSE) at any age.
FORCE disagreed with these changes and published a response to the Secretary of Health, saying:
The USPSTF recommendations apply to women of average risk, but will detrimentally affect members of the high-risk community whose cancers tend to develop at a younger age, are more aggressive, and are often found at a later, less curable stage. Many learn about their high-risk status only after they are diagnosed with breast cancer detected by mammogram or breast self-exam. Research shows that the high-risk community benefits from BSE and mammography. By delaying screening mammography until age 50 we miss opportunities to identify breast cancers in young high-risk women. Changing mammography frequency after age 50 means aggressive, quicker-developing cancers will go undetected. We are concerned that these changes will cost lives.
Commentary to SACGHS
FORCE submitted testimony to the Secretary’s Advisory Committee on Genetics Health and Society (SACGHS) about the need for more government oversight of the marketing of genetic tests to consumers and health care providers. Below are excerpts:
We are continuing to hear from people who have been tested without benefit of genetic counseling and receive results from doctors or nurses who have no understanding of the significance of test results. We are also learning of incorrect or inappropriate tests ordered at significant expense to the consumer and/ or their insurance company.
Despite published guidelines that outline genetic counseling prior to BRCA testing as standard-of-care, because much of the general population is unaware of the existence of genetics experts, and health care providers are being discouraged from referring patients, consumers have no way of knowing that they are receiving substandard care and have no venue for registering complaints.
We urge the SACGHS to recommend federal action to monitor, regulate, and track adverse events resulting from marketing by laboratories to both consumers and health care professionals, and to require doctors to know about, inform patients about, and refer patients or provide them access to standard-of-care genetic counseling prior to ordering genetic testing for a patient.
Since our testimony, the FDA is encouraging consumers, advocacy groups, and health care providers to submit these cases through the FDA’s MedWatch online portal.
To learn more about advocacy at FORCE, visit our “Advocacy” section.
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