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FORCE advocates for families facing hereditary breast and ovarian cancer in areas such as access to care, research funding, insurance, and privacy.

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Newsflash

4/25/17
FORCE VP of Advocacy is in NY today participating in the Basser Center for BRCA's "The Intersection of Cancer Genetics, Law and Advocacy" event.

3/30/17
FORCE joined Harvard, several patient advocacy orgs and pharma companies to submit FDA comments regarding the voluntary provision of plain language summaries of aggregate results to research subjects.

3/28/17
FORCE is on Capitol Hill today...part of a CIBR Medical Technology Showcase team presenting on new cancer imaging technology & fighting for research funding.

3/21/17
Today FORCE met with Senate HELP committee staff to discuss concerns about H.R. 1313. Read more...

2/22/17
FORCE participated in NCI's “Approaches to Blue Ribbon Panel Recommendations: The Case of Lynch Syndrome" Workshop.
More details...

2/21/17
FORCE submitted comments in support of Medicare coverage of comprehensive genetic profiling for patients with advanced ovarian cancer. Read more...

1/19/17
FDA launches Oncology Center of Excellence as part of the National Cancer Moonshot initiative. 

12/21/16
The FDA approved AeroForm, a new tissue expander for women undergoing breast reconstruction. Learn more...

Current Issues

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Insurance Coverage & Barriers

Hereditary Cancer Health Care Report

April 20, 2017 - New Plan to Repeal and Replace Obamacare Considered

In an effort to bridge the gap between the House Freedom Caucus and moderates, congressional leaders are reportedly working on revisions to the proposed ACA replacement legislation. 

The changes being discussed would permit states to apply for waivers to a core ObamaCare provision, known as community rating, that stops insurance companies from raising premiums based on an individual's health, as long as the states also offer high-risk pool coverage or participate in the federal high-risk pool. Waiving this provision would enable insurers to charge much higher rates based on one's health and could put coverage out of reach for many Americans. ​

Genetic Testing & Counseling

Comments on Draft Research Plan for BRCA Testing Submitted

FORCE recently submitted comments on the USPSTF Draft Research Plan for BRCA-Related Cancer: Risk Assessment, Genetic Counseling, and Genetic Testing. The final Research Plan will be used to guide a review of scientific evidence to develop updated guidelines on BRCA genetic counseling and testing. These recommendations are utilized to inform coverage decisions on specific preventive services. The Affordable Care Act stipulates that any preventive service receiving a USPSTF rating of “A” or “B” must be covered by most health plans with no copay or cost-sharing. As such, these guidelines impact access to care and insurance coverage of services for many members of the hereditary cancer community.

Genetic Privacy & Protection

New Legislation Threatens Genetic Privacy

H.R. 1313, the Preserving Employee Wellness Programs Act, garnered a great deal of attention in recent weeks. On March 22nd, we received word that the bill is "on hold" and will not move forward without revisions—including changes to the genetic information requirements. Unfortunately, members of the House Committee on Education and the Workforce have indicated that they will push forward with modified legislation. We are working with Members of Congress to ensure that any revisions to the proposed legislation reflect the concerns of those affected by hereditary cancer. We will provide updates on this important issue when they are available. 

Insurance Coverage & Barriers

FORCE Supports Oral Chemotherapy Parity Initiatives

Oral chemotherapy is becoming more common and is the standard of care for many types of cancer. Oral treatment also accounts for about a third of the oncology development pipeline. Importantly, many oral anti-cancer medications do not have IV or injected alternatives, and are the only option for some patients. For this reason, these medications must be as affordable as their IV counterparts. FORCE is supporting the Cancer Drug Coverage Parity Act, a national legislative initiative which strives to create equal insurance coverage of patient administered and physician administered cancer treatments.

Screening & Prevention

Ovarian Cancer Screening for High-Risk Women

Ovarian cancer accounts for more deaths than any other cancer of the female reproductive system. An estimated 20% of these cancers are due to hereditary factors such as a BRCA genetic mutation. Women with inherited predispositions face greatly increased risk of this, and possibly other cancers. A number of tests have been evaluated as screening methods for early stage ovarian cancer but none have proven reliable. In September 2016, the FDA released a Safety Communication recommending against the use of ovarian cancer screening tests. FORCE responded with a letter to the FDA and an official statement on the issue.

Screening & Prevention

Breast Mammograms for Women Under Age 50 Preserved

In early 2016 the U.S. Preventive Services Task Force (USPSTF) released new breast cancer screening guidelines which recommended raising the minimum age for annual screening mammograms for “average risk” women to 50. If implemented, women between the ages of 40 and 49 would likely lose access to yearly breast screening mammography. FORCE was a leader in efforts to curtail the proposed guidelines, preserving 100% insurance coverage of this lifesaving cancer screening for all women starting at age 40.

Genetic Testing & Counseling

Clarification Includes Survivors in BRCA Screening Guidelines

The USPSTF BRCA-Related Cancer: Risk Assessment, Genetic Counseling, and Genetic Testing Guidelines are used to determine who is eligible for BRCA genetic counseling and testing with no out-of-pocket costs under the Affordable Care Act. These recommendations were initially interpreted to apply only to women with a family cancer history consistent with the USPSTF criteria, who have not been diagnosed with cancer. In 2015, a clarification was issued indicating that these guidelines also apply to women who have been diagnosed with breast, ovarian, or other cancers. 

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