Advocacy

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

Advocacy > Advocacy Issues


Newsflash

4/8/2019
FORCE submitted a letter of support for Texas legislation that would mandate coverage of fertility preservation prior to cancer-related surgery or treatment.

3/21/2019
FORCE, with over 300 organizations and institutions, is supporting the Ad Hoc Group’s FY2020 recommendation of at least $41.6 billion in funding for the NIH.

3/19/2019
We signed onto a letter to Rep. Debbie Wasserman Schultz thanking her for her leadership on the PALS Act, preserving mammograms for women ages 40-49.

3/18/2019
FORCE, joined by interested orgs, submitted extensive 
comments
on the USPSTF draft guidelines on BRCA counseling and testing. 

2/19/2019
FORCE and a group of 20 stakeholders met with Medicare to urge continued coverage of genetic testing for all cancer survivors who meet guidelines. 

2/15/2019
The government funding bill President Trump signed into law today contained language directing the FDA to ensure breast density information is included in mammography reports.

Genetic Privacy & Protection

In the United States, there are laws and regulations aimed at protecting people from discrimination based upon a diagnosis of cancer or an increased risk of disease. Some of these laws are federal, covering the entire U.S. and its territories. In certain instances, individual states pass legislation providing protections beyond those offered at the federal level. FORCE monitors and weighs in on these important protections on behalf of the hereditary cancer community.

Genetic Privacy & Protection

Excessive Wellness Program Penalties Eliminated

Rules issued by the Equal Employment Opportunity Commission (EEOC) in 2016 weakened protections against invasion of medical privacy and eroded workplace and health insurance discrimination safeguards afforded by the GINA and ADA. In December 2017, a court vacated the EEOC’s wellness program incentive rules. Effective January 1, 2019, workers and their spouses may no longer be financially pressured into providing health history information or undergoing medical exams as part of an employer-sponsored wellness program.

Insurance Coverage & Barriers

Lawsuit Challenges ACA Preexisting Conditions Protections

September 18, 2018 - Earlier this month a Texas Federal District Court heard arguments in the case Texas v. United States. The Justice Department is weighing in on a lawsuit which could eliminate the Affordable Care Act’s (ACA) protections for people with preexisting conditions. The suit focuses on the Supreme Court’s 2012 decision that upheld the ACA’s requirement that Americans carry health insurance or pay a tax penalty. Noting that the tax overhaul passed in December 2017 eliminated the tax penalty, the litigation argues that the entire ACA health care law is unconstitutional. 

Insurance Coverage & Barriers

Statement Sets the Record Straight on AHCA and HR 1313

May 2017 - Recent events related to proposed changes in health care and genetic privacy laws have spurred concern and uncertainty in the hereditary cancer community. Some media stories have disseminated inaccurate information, which has intensified people’s unease. We prepared this briefing to dispel misinformation and allay some of the fears that have been expressed. This statement aims to answer questions and clarify information regarding HR 1313, employer-based wellness programs, and GINA. It also explains where things stand with repeal and replacement of the ACA, and clarifies what may be considered a pre-existing condition. 

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 22, 2017, 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 indicated that they will push forward with modified legislation. We are working to ensure that any revisions to the proposed legislation reflect the concerns of those affected by hereditary cancer. Updates on this important issue will be provided when they are available. 

Genetic Privacy & Protection

Genetic Information Nondiscrimination Act (GINA)

In 2008, the Genetic Information Nondiscrimination Act (GINA) was passed to protect individuals from genetic discrimination in health care and employment. GINA was the result of a 13-year effort spearheaded by the Coalition for Genetic Fairness (CGF).  FORCE was an active member of this coalition beginning in 1999, the year FORCE was established.  

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