Advocacy
Current action items
Response to USPSTF breast cancer screening guideline changes
Newly-recommended changes for breast cancer screening by the United States Preventive Services Task Force (USPSTF) are getting a lot of attention and proving to be controversial. 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. This bill has almost 200 Cosponsors. 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 has submitted this letter to Congress in support of the EARLY Act. Read and sign on to the letter that FORCE and noted health care experts submitted in support of the EARLY Act legislation.
We need your help now! Send a letter to your Senators and House Representative.
Write a letter to your representative:
If you do not know who your House Representative is, visit the House of Representatives website and type your zip code in the upper left-hand corner. Next, view the list of house representative cosponsors of the EARLY Act. If your representative is not listed, contact them (preferably by e-mail or fax) and ask them to support HR 1740. Tell them why the issues of breast cancer awareness, prevention, genetics, and support for young women are important to you. Below are sample letters that you can paste into an e-mail or fax. We are preparing a few sample letters for people of different circumstances. Below is a sample of the letter you can write, Please feel free to edit the letters and personalize them with your story. Note there is a section in the third paragraph where you should choose the appropriate words that best fit your description. Make sure that you include the title with the bill number (HR1740) in your letter.
Sample letter to send to your Representative:
Please Support Representative Wasserman Schultz’s EARLY Act on Breast Cancer
(HR 1740)
Honorable Representative ___________________
United States House of Representatives
Dear Representative:
I am a constituent and an advocate belonging to a national organization called Facing Our Risk of Cancer Empowered (FORCE). I’m writing to request your support for Representative Wasserman Schultz’s EARLY Act (HR1740) on Breast Cancer. This legislation is critical to ensure the health of our nation’s young women.
Breast cancer is the leading cause of cancer death among young women. The disease is more aggressive in younger women. Young women with breast cancer have unique challenges to struggle with such as the possibility of early menopause, pregnancy after diagnosis and more advanced cancer at diagnosis. Young women need to be empowered to take control over their breast health. This bill can make a difference by initiating a public education campaign about breast cancer that young women need to hear.
I am a (BRCA carrier/cancer survivor/person with cancer in my family/concerned citizen/health care provider). As such, I also realize how critical it is for heath care professionals to be more aware of the risk factors associated with this genetic predisposition and the health care providers who can best help women assess their risk. I believe there needs to be a focus on and an increase in education about breast cancer risk, detection, and prevention. We now have the capability to better understand hereditary breast cancer, identify those who are at the greatest risk, and intervene to lower their risk for cancer. This is the first generation that can choose to utilize this technology to help prevent cancer before it starts.
Your support on this legislation could not come at a more important time. Thank you.
Respectfully,
Write a letter to your senators:
If you do not know who your Senators are, visit the Senate website and type your zip code in the upper left-hand corner. Next, view the list of senate representative cosponsors of the EARLY Act below. If your representative is not listed, contact them and ask them to support HR 1740. Tell them why the issue of breast cancer awareness, prevention, and support for young women are important to you. Below are sample letters that you can paste into an e-mail or fax.
Sample letter to send to your Senator:
Please Support Representative Wasserman Schultz’s EARLY Act on Breast Cancer
(S994)
Honorable Senator ___________________
United States Senate
Dear Senator:
I am a constituent and an advocate belonging to a national organization called Facing Our Risk of Cancer Empowered (FORCE). I’m writing to request your support for Representative Wasserman Schultz’s EARLY Act (S994) on Breast Cancer. This legislation is critical to ensure the health of our nation’s young women.
Breast cancer is the leading cause of cancer death among young women. The disease is more aggressive in younger women. Young women with breast cancer have unique challenges to struggle with such as the possibility of early menopause, pregnancy after diagnosis and more advanced cancer at diagnosis. Young women need to be empowered to take control over their breast health. This bill can make a difference by initiating a public education campaign about breast cancer that young women need to hear.
I am a (BRCA carrier/cancer survivor/person with cancer in my family/concerned citizen/health care provider). As such, I also realize how critical it is for heath care professionals to be more aware of the risk factors associated with this genetic predisposition and the health care providers who can best help women assess their risk. I believe there needs to be a focus on and an increase in education about breast cancer risk, detection, and prevention. We now have the capability to better understand hereditary breast cancer, identify those who are at the greatest risk, and intervene to lower their risk for cancer. This is the first generation that can choose to utilize this technology to help prevent cancer before it starts.
Your support on this legislation could not come at a more important time. Thank you.
Respectfully,
__________________
List of Senators supporting S994: EARLY Act
Here is a list of Senators supporting the EARLY Act. We will try to keep the list as updated as possible. If your Senator is not on the list but responds that they are supporting the bill, please e-mail us and let us know asap so we can add them:
Sen. Evan Bayh [D-IN]
Sen. Barbara Boxer [D-CA]
Sen. Roland Burris [D-IL]
Sen. Benjamin Cardin [D-MD]
Sen. Russell Feingold [D-WI]
Sen. Dianne Feinstein [D-CA]
Sen. Kirsten Gillibrand [D-NY]
Sen. Kay Hagan [D-NC]
Sen. Edward Kaufman [D-DE]
Sen. John Kerry [D-MA]
Sen. Herbert Kohl [D-WI]
Sen. Mary Landrieu [D-LA]
Sen. Frank Lautenberg [D-NJ]
Sen. Patrick Leahy [D-VT]
Sen. Joseph Lieberman [I-CT]
Sen. Mel Martinez [R-FL]
Sen. Barbara Mikulski [D-MD]
Sen. Patty Murray [D-WA]
Sen. Bill Nelson [D-FL]
Sen. Bernard Sanders [I-VT]
Sen. Olympia Snowe [R-ME]
Sen. Debbie Ann Stabenow [D-MI]
Sen. Tom Udall [D-NM]
Sen. David Vitter [R-LA]
If your Senators are NOT on this list, please send them an e-mail with the above message and ask them to sponsor the bill.
What else you can do
Recently some groups that have been historically opposed to genetic testing have criticized the legislation based on misunderstandings about what the legislation will do. The legislation will promote evidence-based, age-appropriate education on breast cancer for young women. 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 support 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 will become law in May 2009, while the employment protections will enacted in November 2009.