Advocacy
Current aCTION Items
Urgent: Help get Hereditary Breast and Ovarian Cancer Week legislation passed today!
This week, FORCE joined Congresswoman Debbie Wasserman Schultz (D-FL) to introduce H Res#1522 - legislation to establish Hereditary Breast and Ovarian Cancer (HBOC) Week. The text of the legislation is available on this page.
The legislation calls for designating the last week of September as “National Hereditary Breast and Ovarian Cancer Week” and Wednesday of that week as “National Previvor Day.” HBOC Week and Previvor Day will raise awareness of hereditary cancer, leading to more education, research and resources. Knowledge of a genetic predisposition to cancer, available risk management and treatment options can save lives!
We need your help now!
At least 100 co-sponsors are needed to pass the bill.
Let your House Representative know that H Res#1522 is critical in the fight against hereditary cancer.
View a copy of the H Res #1522 Resolution
It's easy and fast:
1. Find your House Representative: Go to https://writerep.house.gov/writerep/welcome.shtml
2. Copy, paste and send the e-mail below.
Sample eMail to your Representative:
Dear Representative________________________:
I am writing to urge you to sign on as a co-sponsor of the legislation to establish Hereditary Breast and Ovarian Cancer Week, H Res#1522, introduced by Congresswoman Debbie Wasserman Schultz (D-FL).
The legislation calls for designating the last week of September as “National Hereditary Breast and Ovarian Cancer Week” and Wednesday of that week as “National Previvor Day.”
HBOC Week and Previvor Day will raise awareness of hereditary cancer, leading to more education, research and resources. Knowledge of a genetic predisposition to cancer, available risk management and treatment options can save lives!
<<You may wish to insert a statement on the personal impact. Personal notes make your correspondence more meaningful. If you insert a personal statement, keep it short (no more then 3-4 lines. Sample: I carry the BRCA1 mutation. I lost my Grandmother, Mother and Aunt to this disease before we knew anything about BRCA and it’s effects. The knowledge I gained about this disease allowed me to take steps that have significantly reduced my risk. I want to make sure ALL women (and men) have that knowledge.>>
If you are willing to co-sponsor this bill, please contact Coby Dolan (Coby.Dolan@mail.house.gov) or Danielle Gilbert (Danielle.Gilbert@mail.house.gov) at Congresswoman Wasserman Schultz's office.
Thank you for your support.
Sincerely,
Full Name
Address (Including City and State)
Current list of co-sponsors
Here is a list of the current co-sponsors:
Aderholt, Robert (R - AL) |
LaTourette, Steven (R - OH) |
If your respresentative is not on this list and you have already contacted them, please encourage friends and neighbors to write to them too. They can support this resolution even if they are not personally affected by HBOC
Response to USPSTF breast cancer screening guideline changes
The United States Preventive Services Task Force (USPSTF) recommended changes to the screening guidelines for breast cancer.. The task force:
- Recommended against screening mammography for women ages 40–49.
- Recommended screening mammography in women older than 50 be performed biennially rather than annually.
- Recommended against teaching or performing Breast Self Exam (BSE) at any age.
FORCE has issued a position statement and we are circulating a petition opposing these guideline changes. We are concerned about any policy changes that affect breast cancer screening guidelines and that might affect health care coverage for women.
Read the full FORCE position statement and sign our petition here.
EARLY Act
The Breast Cancer Education and Awareness Requires Learning Young Act of 2009 (EARLY Act) HR 1740 was introduced by Representative Wasserman (D-FL), a young breast cancer survivor who carries a BRCA2 mutation. The EARLY Act calls for a nationwide campaign targeting women under 40 and their doctors. this bill proposes a nationwide awareness and support campaign for women age 45 and under, including women who are at high risk for breast cancer or are breast cancer survivors, and their doctors. The EARLY Act includes broad-reaching public and healthcare professional education campaigns, prevention research, and additional support for young women diagnosed with breast cancer.
FORCE submitted this letter to Congress in support of the EARLY Act. Read the letter that FORCE and noted health care experts submitted in support of the EARLY Act legislation.
In 2010, the EARLY Act was signed into law as part of the healthcare reform legislation! Here is a document with information about Myths vs. Facts about the EARLY Act, feel free to read the information and submit it to your local media. Tell them why YOU supported EARLY and share your personal story.
Advocates from FORCE and other organizations pose with Representative Wasserman (top right)
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 became law in May 2009, while the employment protections became law November 2009. For more information about the protections and limitations of the Genetic Information Nondiscrimination Act, watch our webinar on GINA which was presented in April 2010 (registration is required but the webinar is free).
GINA survey
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.