Advocacy
Current action items
The Genetic Information Nondiscrimination Act (GINA)
GINA was signed into law on May 21, 2008. This legislation is federal legislation that prohibits health insurance and employment discrimination on the basis of genetic information or a genetic test result.
FORCE worked tirelessly with the Coalition for Genetic Fairness in order to assure the passage of this important bill. The coalition is composed of nonprofit organizations, professional societies, and corporations dedicated to the principle that people should not be discriminated against based on a genetic predisposition to or family history of disease.
With regard to health insurance discrimination, the Act will:
- prohibit enrollment restriction and premium adjustment on the basis of genetic information;
- prevent health plans and insurers from requesting or requiring that an individual take a genetic test;
- prevent health plans and insurers from pursuing or being provided information on predictive genetic information or genetic services prior to enrollment – the time when this information is most likely to be used in making enrollment decisions;
- cover all health insurance programs, including those regulated by the federal government under ERISA, state-regulated plans, Medigap, and the individual market.
With regard to employment discrimination, the Act will:
- prohibit discrimination in hiring, compensation, and other personnel processes;
- prohibit the collection of genetic information, and allow genetic testing only to monitor the adverse effects of hazardous workplace exposures;
- require genetic information possessed by employers to be confidentially maintained and disclosed only to the employee or under other tightly controlled circumstances;
- cover employers, employment agencies, labor organizations, and training programs.
The health insurance protections offered by GINA are expected to roll out 12 months after the bill is signed, whereas the employment protections will be fully realized in 18 months.
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Johanna's Law
Johanna's Law: The Gynecologic Cancer Education and Awareness Act would authorize a national gynecologic cancer early detection and awareness campaign directed at women and their physicians. Sponsored by Representatives Rosa DeLauro (D-CT), Kay Granger (R-TX), Darrell Issa (R-CA), and Sander Levin (D-MI) and endorsed by organizations representing over 300,000 physicians, nurses, cancer survivors and women, Johanna’s Law would create a federal campaign of gynecologic cancer education designed to improve early detection.
What the bill will do:
- The bill would authorize a national gynecologic cancer early detection
and awareness campaign directed at women and their providers. National
Public Awareness Campaign. The Secretary of the Department of Health
and Human Services (HHS), would carry out a national campaign to increase
women’s awareness and knowledge of gynecologic cancers. Activities
would include:
- Maintaining and distributing a supply of written materials that provide information to the public about gynecologic cancers, and;
- Developing and placing public service announcements encouraging women to discuss their risks for gynecologic cancers with their physician, and informing the public about the availability of written materials and how to obtain them.
- Demonstration Grants for Outreach and Education. HHS will award demonstration grants to local and national nonprofits to test different outreach and education strategies, including strategies directed at providers, women and their families. Priority would be given to groups with demonstrated expertise in gynecologic cancer education, treatment, or in working with groups of women who are at especially high risk. The proposals should establish linkage with providers, hospitals, payers, and state health departments.
What you can do
There are many ways to make your voice heard on Capitol Hill. Letters and telephone calls to the Congressional representative and Senators who represent your district or state are among the most effective. Legislators do care about the concerns of the constituents who vote them in and out of office and will often decide to co-sponsor legislation in direct response to calls and letters from constituents of theirs that have asked for that support. For detailed information on contacting your elected officials about Johanna's Law, see the Johanna's Law website.