Advocacy

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

12/31/2018
As a friends of the Cancer Policy Institute member, FORCE provided comments on the International Pricing Index (IPI) Model for Medicare Part B Drugs.

12/20/2018
Success! The EEOC removed the GINA regulations section allowing incentives/penalties to provide personal health information as part of an employer-sponsored wellness program.

11/26/2018
FORCE endorsed HR 6836, the Clinical Treatment Act, which would ensure that states cover routine care costs for Medicaid enrollees who participate in approved clinical trials.

9/26/2018
FORCE joined nearly 100 patient advocacy orgs in expressing concern about allowing Medicare Advantage plans to use step therapy. Read letter...

9/13/2018
We joined in a letter encouraging the House Ways and Means Committee to make the 7.5% medical expense deduction permanent.

Current Issues

Hot Topic

Genetic Testing & Counseling

ALERT:
Buyers Beware. Cancer Genetic Testing Should Be Performed in the Health Care Setting.

There is a flood of information available about genetic tests for cancer risk in the media, and even at community events, such as health fairs and senior centers. Genetic testing can provide important, life-saving information when done in the right way. If these promotions have caught your attention and you are considering DNA/genetic testing, there is important information that you should know to protect yourself from misinformation and potential harm.

Insurance Coverage & Barriers

ACA unconstitutional? What does this mean for preventive care and pre-existing conditions?

On Friday, December 14, a Texas district court judge ruled that the Affordable Care Act (ACA) is unconstitutional due to a recent change in federal tax law. As part of the 2017 tax reform package, the ACA was amended to eliminate the penalty for not having health insurance. A lawsuit argued, “Once the heart of the ACA—the individual mandate—is declared unconstitutional, the remainder of the ACA must also fall.” The judge agreed.

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.

Screening & Prevention

Breast Mammograms for Women Under 50 Preserved Through 2019

Annual mammograms for women age 40 and over are protected for another year. In 2016, the U.S. Preventive Services Task Force (USPSTF) released new breast cancer screening guidelines recommending that annual screening mammograms for “average risk” women begin at age 50. If implemented, women ages 40-49 may lose access to annual mammograms. FORCE supported passage of the Protecting Access to Lifesaving Screenings (PALS) Act to preserve mammograms with no out-of-pocket costs for women starting at age 40 and continues to be a leader in efforts to preserve 100% insurance coverage of this lifesaving cancer screening.

Insurance Coverage & Barriers

High-Risk Individuals Often Struggle to Get Insurance Coverage of Health Services

The ACA guarantees coverage of certain cancer screenings at no cost to the patient. This has allowed many Americans to access care that they might not otherwise be able to afford. As some impacted by hereditary cancer have learned, however, insurers are not required to cover screenings beyond those mandated in the ACA. Members of our community often struggle to get coverage for earlier, more intensive screenings and risk-reducing surgeries. This is why FORCE created sample appeal letters for a variety of services.

Insurance Coverage & Barriers

New Federal Regulations and Proposals May Adversely Affect
High-Risk Cancer Community

October 31, 2018 – With midterm elections looming, the White House and federal agencies recently announced new regulations and proposals—ranging from drug pricing to state ACA waivers and insurance plans to health reimbursement accounts—that will impact health care in the U.S. Some may have negative consequences for our community but expansion of health reimbursement arrangements (HRAs) could provide a silver lining. 

Insurance Coverage & Barriers

FORCE Supports Chemotherapy Parity Initiatives

Oral chemotherapy is becoming standard-of-care for many types of cancer and accounts for about a third of the oncology development pipeline. Importantly, many oral anti-cancer medications do not have IV or injected alternatives. PARP inhibitors, which hold great promise for treating BRCA-related cancers, are just one example. For this reason, these medications must be as affordable as their IV counterparts. FORCE is supporting the Cancer Drug Coverage Parity Act, a federal legislative initiative which strives to create equal insurance coverage cancer treatments, regardless of how they are administered.

Treatments & Therapies

Federal "Right to Try" Legislation Passes, Signed by President

May 30, 2018 - Federal right-to-try legislation aimed at loosening oversight of access to unapproved drugs for "compassionate use" was signed by President Trump today. The law allows patients with cancer or other serious illnesses to circumvent the Food and Drug Administration (FDA) when requesting access to experimental therapies not yet approved for public use. Congress passed the final right-to-try bill on May 22 after months of negotiation and changes to the legislation.

Insurance Coverage & Barriers

FORCE Leads the Charge for Medicaid Coverage of Genetic Testing

Genetic testing for increased risk of breast, ovarian, and other cancers has become standard-of-care for prevention and risk management. Medicaid coverage of health services, however, is managed independently by each state. Only 4 Medicaid programs do not cover genetic counseling and/or testing for inherited BRCA genetic mutations. FORCE wrote comments and secured the support of over 30 partner organizations to encourage NC Medicaid to offer this service to its enrollees.

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