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

5/9/18
We joined 80 patient advocacy, medical, and industry orgs in urging Congress to enact legislation to modernize FDA oversight of clinical laboratory diagnostics. Read letter...

4/17/18
FORCE and over 100 patient and professional health orgs reached out to Congressional leaders to oppose expansion of short-term health insurance plans. Read letter...

4/12/18
FDA finalizes guidances to accelerate development of reliable, beneficial next generation sequencing-based tests. Read press release...

4/9/2018
FORCE joined other organizations in urging Utah to clarify and protect coverage of breast reconstruction after cancer for its Medicaid recipients. Read more...

2/27/2018
FORCE, along with over 100 other organizations, is advocating for continued funding of DoD research programs. Read our letter to Congressional leaders.

 

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.

Insurance Coverage & Barriers

FORCE Leads the Charge for Medicaid Coverage of Genetic Testing

Genetic testing for increased susceptibility to breast, ovarian, and other cancers has become the standard of care for prevention and risk management in the U.S. Medicaid coverage of health services, however, is managed independently by each state. Of the 50 state Medicaid programs, only 4—Alabama, New Hampshire, North Carolina, and South Carolina—do not cover genetic counseling and/or testing for inherited genetic mutations such as BRCA1 or BRCA2. FORCE recently learned that the North Carolina Division of Medical Assistance (DMA) is reviewing its policy on offering genetic testing. We mobilized quickly to write comments and secured the support of over 30 partner nonprofit and medical professional organizations in an effort to encourage NC Medicaid to offer this invaluable 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 cancer treatment options. These tests, also known as companion diagnostics, examine a person’s tumor or blood to see which targeted medications may be most effective for treating their cancer. The new policy applies specifically to patients with advanced cancer.

Treatments & Therapies

Federal "Right to Try" Legislation Aims to Increase Access

Federal right-to-try legislation aimed at loosening oversight of access to unapproved drugs for "compassionate use" is gaining momentum on Capitol Hill. Bills proposed in the House and Senate would allow 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. The House of Representatives approved a right-to-try bill on March 21, 2018. Now the Senate must align its version of the legislation with the House and vote on the bill. 

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 continues to be a leader in efforts to preserve 100% insurance coverage of this lifesaving cancer screening for all women who are not known to be high-risk starting at age 40.

Insurance Coverage & Barriers

FORCE Supports Chemotherapy Parity Initiatives

Oral chemotherapy is becoming the 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, and are the only option for some patients. 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 of 2017, a national legislative initiative which strives to create equal insurance coverage cancer treatments, regardless of how they are administered.

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, 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. 

Insurance Coverage & Barriers

Senate Drops ACA Repeal Effort

A bill introduced in the Senate—referred to as the Graham-Cassidy plan—briefly gained momentum but was dropped when it couldn't garner enough support for passage. Facing a deadline of September 30, 2017, to pass legislation with a simple majority vote, the bill drew criticism from patient advocacy groups, medical societies, and others. The revised ACA repeal plan would have given states broad waiver authority to eliminate ore protections for people with preexisting health conditions. These waivers would have come on top of the proposal’s elimination of ACA marketplace subsidies and Medicaid expansion, radical restructuring of the rest of the Medicaid program, and large cuts to total federal funding for health insurance coverage.

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. 

Insurance Coverage & Barriers

Hereditary Cancer Health Care Report

May 4, 2017
Today, the U.S. House of Representatives passed a bill that would repeal much of the Affordable Care Act (ACA) and replace it with a new health care system.The new legislation allows states to seek a waiver from ACA's current requirement that insurers charge people the same for coverage regardless of whether they have a pre-existing condition. It also eliminates mandatory coverage of essential health benefits such as maternity care, mental health, and preventive screenings. It's important to understand that this is only the first in a number of steps required to change the current U.S. health system. 

Screening & Prevention

FORCE Weighs In on Prostate Cancer Screening Guidelines

In May 2017, FORCE submitted comments on the USPSTF Draft Recommendation Statement and Evidence Review for Prostate Cancer Screening. Once finalized, 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. 

Insurance Coverage & Barriers

Election 2016 Update

Members of the FORCE community have reached out with questions and concerns about the implications of the recent election. See our statement on the impact of the 2016 election for people affected by hereditary cancer and our December 2016 blog to learn how the change in administration may affect you and your family. Stay tuned for updates in the coming months.

Have concerns about health insurance? Coverage for pre-existing conditions? Caps on out-of-pocket health care expenditures? We encourage you to call or email your elected officials to tell them what's important to you. Contact info for your current members of Congress can be found at 
www.govtrack.us/congress/members.

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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