Advocacy

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

Advocacy > Current Issues

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Newsflash

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.

9/7/2018
We sent a letter to Senator Collins (R-ME) seeking her leadership on national oral parity legislation

9/5/2018
FORCE signed on to a coalition letter urging the Senate to maintain the allowed medical expense deduction at 7.5% of one's adjusted gross income.

7/25/2018
This week, the House of Representative passed the Palliative Care and Hospice Education and Training Act to improve health professional training in palliative care. Read Bill...

Current Issues

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 be able to afford otherwise. As some in the hereditary cancer community have learned, however, health insurers are not required to cover screenings beyond those mandated in the ACA, which are focused on the “average risk” population. Our community members often struggle to get coverage for earlier, more intensive cancer screenings and risk-reducing surgeries. This is why FORCE created sample appeal letters for a variety of services.

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 lawsuit 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. 

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.

Treatments & Therapies

Medicare Establishes National Policy for Coverage of Tumor Testing

The Centers for Medicare and Medicaid Services (CMS) recently finalized a National Coverage Determination (NCD) to provide Medicare beneficiaries with coverage of FDA-approved or -cleared tests that help identify the best treatment options for an individual's disease. These tests, also known as companion diagnostics, examine a person’s tumor or blood to determine which targeted medications may be most effective for treating their cancer. The new policy applies only to patients with advanced cancer.

Genetic Testing & Counseling

FDA Approves New Direct-to-Consumer Genetic Test for 3 BRCA Mutations

On March 6, 2018, the Food and Drug Administration (FDA) announced approval of a new direct-to-consumer genetic test for three BRCA mutations most commonly found in people with Ashkenazi Jewish (Eastern European) ancestry, often referred to as founder mutations. With thousands of known BRCA1 and BRCA2 mutations, 23andMe’s “Personal Genome Service Genetic Health Risk (GHR) Report for BRCA1/BRCA2 (Selected Variants)” provides consumers with an extremely limited snapshot of potential hereditary cancer risk. 

Screening & Prevention

Breast Mammograms for Women Under Age 50 Preserved

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 the minimum age for annual screening mammograms for “average risk” women be raised to 50. If implemented, women ages 40-49 would likely lose access to yearly screening 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 for all women.

Genetic Privacy & Protection

Wellness Program Penalties Overruled By Court

Rules issued by the U.S. Equal Employment Opportunity Commission (EEOC) in May 2016 weakened protections against invasion of medical privacy and erode workplace and health insurance discrimination safeguards afforded by GINA and ADA. In December 2017, a court vacated the EEOC’s wellness program incentive rules effective January 1, 2019. This means that workers and their spouses may no longer be financially pressured into providing medical information or undergoing medical exams; instead, this type of participation in a wellness program must be genuinely voluntary, beginning in 2019.

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.

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