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

July 31, 2020
Urged Medicare to allow use of non-invasive colorectal cancer screening test options in light of COVID; and, if a follow-up colonoscopy is needed, that it is covered with no cost-sharing for the patient.

7/20/2020
Joined 100+ patient and health care orgs to oppose a proposed Medicaid Rule that erodes prescription copay coupon assistance programs, a lifeline for people who depend on this aid for their medicines, and their health and well-being.

7/1/2020
Called on Congress to delay implementation of a new policy that would allow health insurers to exclude cost-sharing assistance from counting towards patients' out-of-pocket maximums.  

6/26/2020
Provided feedback on the “Preparing for the Next Pandemic” white paper asking that it address high out-of-pocket costs for oral anticancer drugs in future pandemic relief efforts.

Insurance Coverage & Barriers

Take Action Now!

People affected by hereditary cancer need a variety of health care services including genetic counseling and testing, increased screening, chemoprevention and/or risk-reducing surgeries. In addition, targeted therapies are available for certain hereditary cancers. FORCE identifies possible barriers to care and works to ensure that high-risk individuals have access to the needed interventions via health insurance coverage, financial aid or participation in research.

Genetic Privacy & Protection

Florida Enacts Sweeping Genetic Protection Law

July 1, 2020 - Florida just became first state to enact a law that protects genetic information from life, long-term care and disability insurers, which are exempt from the national protections provided by the GINA. The new law says that insurers cannot require or ask for genetic information or use genetic test results in any manner. Even if genetic information is shared, the insurers cannot deny coverage, limit, or cancel insurance coverage, or set different premiums based on genetic information or DNA.

Insurance Coverage & Barriers

FORCE Fights for Our Community, COVID Relief

The coronavirus pandemic has touched all aspects of American life, from education and employment to travel, hobbies and health care. For people with or at high risk of cancer, there are unique challenges. In additional to financial and familial stress, medical appointments have gone virtual, screenings and surgeries cancelled or rescheduled, and some treatments moved to the home setting to reduce risk for people with compromised immune systems.

Here at FORCE, we understand the struggles of our community and have been working tirelessly to help address those needs. In addition to moving our support and educational programs to virtual formats, we have been very active in advocating for policies that provide relief.

Screening & Prevention

ACTION ALERT: Preserve Breast Screenings for Women Ages 40-49

Hereditary cancers are often diagnosed at younger ages and are more aggressive than cancers in the average-risk population. Earlier screening is needed for women with inherited genetic mutations associated with increased cancer risk, Black women and women who were treated with radiation therapy for cancer as a child or young adult. This is why we are asking that you join us in supporting the reauthorization of two important laws—the PALS Act and the EARLY Act.

Genetic Testing & Counseling

Act Now to Support Broader Access to Genetic Counseling

Genetic counselors provide crucial information and expertise to anyone impacted by hereditary cancer. But, did you know that these experts are not approved Medicare practitioners? The “Access to Genetic Counselor Services Act” (H.R. 3235) aims to remedy this issue. Join FORCE and the National Society of Genetic Counselors to support coverage of genetic counseling for Medicare beneficiaries and expanded access to genetic counseling services for all Americans.

Genetic Testing & Counseling

Medicare Finalizes Genetic Testing Policy

January 27, 2020 - Today, the Centers for Medicare and Medicaid Services released its final National Coverage Determination (NCD) on next-generation sequencing (NGS) for people with Medicare. The policy paves the way for national coverage of tumor/biomarker testing and multigene panel testing for hereditary cancer under specific circumstances. It also allows for local Medicare regions to establish policies for NGS-based testing for hereditary cancer mutations.

Genetic Testing & Counseling

BRCA Genetic Screening Recommendations Miss the Mark

U.S. Preventive Services Task Force recommendations guide the use of many health screenings and determine which preventive services are available to patients at no cost under the ACA. In September 2019, the Task Force published new guidelines that slightly expand who is eligible for BRCA counseling and testing. While this change is positive, the guidelines fail to meet the needs of many Americans who may be at increased risk of cancer due to hereditary factors.

Screening & Prevention

Mammograms for Women Age 40-49 Preserved Until 2020

In 2016, the U.S. Preventive Services Task Force released new breast cancer screening guidelines recommending that mammograms for “average risk” women begin at age 50. If implemented, women ages 40-49 may lose access to no-cost annual screening mammograms. FORCE supported passage of the 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

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

On December 14, 2018, 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.

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

Lawsuit Challenges ACA Preexisting Conditions Protections

September 18, 2018 - Earlier this month a Texas Federal District Court heard arguments in the Texas v. United States case. The Justice Department is weighing in on a lawsuit which could eliminate the Affordable Care Act’s 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 case argues that the entire ACA law is unconstitutional. 

Insurance Coverage & Barriers

FORCE Supports Chemotherapy Parity Initiatives

Oral chemotherapy is becoming standard-of-care for many cancers and accounts for about a third of oncology drugs in development. Importantly, many oral anti-cancer medications do not have IV or injected alternatives. PARP inhibitors, especially effective in treating BRCA-related cancers, are just one example. These medications must be as affordable as their IV counterparts. FORCE is supporting the Cancer Drug Coverage Parity Act, federal legislation which strives to create equal insurance coverage of 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.

Insurance Coverage & Barriers

Tax Reform: How Will It Affect the Health Care and the Hereditary Cancer Community?

On December 20, 2017, Congress finalized passage of sweeping tax reform legislation. The plan has numerous components that will likely impact every taxpayer, with a mixture of positives and negatives in regard to health care, the hereditary cancer community and the nonprofit sector. 

How will the new law affect the deduction of medical expenses? The Affordable Care Act? Charitable donations?

Treatments & Therapies

ICER Review of PARP Inhibitors for Ovarian Cancer

In July 2017, the Institute for Clinical and Economic Review (ICER) released a draft evidence report titled, “Poly ADP-ribose polymerase (PARP) Inhibitors for Ovarian Cancer: Effectiveness and Value.” FORCE expressed significant concerns about the report's conclusions via written comments and testified at the Midwest CEPAC meeting on September 14, 2017. ICER released its final report later that month. Despite our efforts and those of many others, the final report does not reflect the value of PARP inhibitors to the broader ovarian cancer community, or to the hereditary cancer community we serve. 

Screening & Prevention

Prostate Cancer Screening Guidelines Fall Short

In May 2017, FORCE submitted comments on the USPSTF Draft Recommendation Statement and Evidence Review for Prostate Cancer Screening. Finalized in May 2018, these recommendations are used by health care providers to guide screening and care, and to determine insurance coverage of specific preventive services. The ACA requires that any preventive service receiving a USPSTF rating of “A” or “B” must be covered by most health plans at no cost to the patient. As a result, these guidelines impact access to care for members of the hereditary cancer community.

Insurance Coverage & Barriers

Statement Sets the Record Straight on AHCA and HR 1313

May 2017 - Proposed changes in health care and genetic privacy laws have spurred concern and uncertainty in the hereditary cancer community. Some media stories have spread inaccurate information, which has intensified people’s unease. We prepared this briefing to dispel misinformation and decrease some of the fears that have been expressed. This statement answers questions and clarifies information about 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. 

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