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

9/3/2019
We joined over 50 orgs representing millions of patients, advocates, caregivers, researchers, and physicians to express support for appointment of Norman Sharpless as FDA Commissioner.

7/26/2019
FORCE is supporting legislation (H.R. 4078) to reauthorize and increase funding for the Breast Cancer Education and Awareness Requires Learning Young Act (EARLY) Act.

6/27/2019
We played a lead role in drafting coalition comments on the FDA's proposed mammography guideline updates.

6/21/2019
FORCE recommendations regarding genomics were accepted and will be integrated into the Healthy People 2030 objectives.

6/3/2019
Today, the FDA announced a new pilot program called Project Facilitate to assist oncologists in requesting access to unapproved therapies for cancer patients.

Insurance Coverage & Barriers

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 Testing & Counseling

New BRCA Genetic Screening Recommendations Miss the Mark

September 2019 - Recommendations published by the U.S. Preventive Services Task Force (USPSTF) guide the use of many health screenings and determine which preventive services are available at no cost-sharing under the Affordable Care Act (ACA). Typically reviewed and updated every 5 years, the Task Force recently published new guidelines that slightly expand the population eligible for BRCA counseling and testing by adding women “who have an ancestry associated with BRCA1/2 gene mutations.” While this change is positive, the recommendations are significantly lacking and fall short of meeting the needs of Americans who may be at increased risk of cancer due to hereditary factors. 

Genetic Testing & Counseling

Medicare Restricts Coverage of Genetic Testing

May 2019 - FORCE is fighting a new Medicare policy that significantly reduces access to genetic testing for BRCA, Lynch syndrome, and other hereditary cancer mutations. Medicare beneficiaries who don’t have "recurrent, relapsed, refractory, metastatic, or advanced stage III or IV cancer" no longer qualify for genetic testing coverage. In other words, people who have earlier stage cancers (stage I or II), those with no evidence of disease or who are “cured” are not eligible for genetic testing. Numerous organizations joined FORCE in submitting comments urging changes to the policy.

Genetic Testing & Counseling

Support 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 of 2019” (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.

Screening & Prevention

Mammograms for Women Age 40-49 Preserved Through 2019

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 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 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.

Insurance Coverage & Barriers

Two Legal Challenges Take Forefront in Health Care Debate

Congress was on recess during the month of August but the legal jockeying around health care reform has continued. On August 2, a coalition of cities filed a federal lawsuit against the President and officials at the Department of Health and Human Services (HHS), alleging that the Administration has “intentionally and unconstitutionally” sabotaged the Affordable Care Act (ACA). The plaintiffs claim that the Administration has purposely tried to undermine or dismantle the law, even though Congress has kept the vast majority of the ACA intact.

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.

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 President signed the bill two days later. The plan has numerous components that will likely impact every taxpayer. We cannot address all of the implications but the bill contains 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?

Insurance Coverage & Barriers

Executive Actions Pose New Challenges for U.S. Health Care

On October 12, 2018, President Trump issued an executive order which could undermine the individual and small group health insurance markets. The order would allow “junk” association and short-term health plans. The same day, the White House announced plans to halt cost-sharing reduction payments (CSRs) which help health insurance companies offset out-of-pocket medical costs for low-income enrollees, keeping coverage affordable. In essence, without changing or repealing the Affordable Care Act, these actions authorize federal agencies to modify regulations so that more health plans will be exempt from some of its core requirements. 

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 guidelines are utilized by health care providers to determine appropriate screening and care and to inform insurance 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 for the patient. Consequently, 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 - 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 Testing & Counseling

Comments on Draft Research Plan for BRCA Testing Submitted

In April 2017, FORCE 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 recommendations on BRCA genetic counseling and testing. These guidelines 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 the 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 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 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. 

Insurance Coverage & Barriers

Medicare Expands Genetic Services Coverage in Some Regions

Four Medicare Area Contractors (MACs) approved Local Coverage Determinations (LCDs) that better align their services with NCCN guidelines in a number of areas such as expanding coverage of genetic testing for individuals who have or had cancer consistent with hereditary cancer syndromes, including men and those affected by prostate and pancreatic cancer; coverage of multigene genetic tests panels if more than one mutation may be indicated; and clarification of the BRCA testing policy for use of the targeted cancer therapy, Lynparza. 

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