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

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

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

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.

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...

Hereditary Cancer Health Care Report

Insurance Coverage & Barriers


May 1, 2017 - FORCE Joins 25 Orgs in Effort to Fight AHCA

FORCE has joined 25 patient advocacy groups representing millions of cancer previvors, patients, and survivors in urging Congress to vote NO on the American Health Care Act (AHCA). We are urging our community to ask Congress to protect people with pre-existing conditions. The latest version of AHCA would gut pre-existing condition protections, result in 24 million Americans losing health care, eliminate critical essential health benefits, and upend the Medicaid program. We need a system that provides reliable access to adequate and affordable health insurance coverage.


April 20, 2017 - New Plan to Repeal and Replace Obamacare Considered

In an effort to bridge the gap between the House Freedom Caucus and moderates, congressional leaders are reportedly working on revisions to the proposed ACA replacement legislation. 

The changes being discussed would permit states to apply for waivers to a core Obamacare provision, known as community rating, that stops insurance companies from raising premiums based on an individual's health, as long as the states also offer high-risk pool coverage or participate in the federal high-risk pool. Waiving this provision would enable insurers to charge much higher premiums based on one's health and could put coverage out of reach for many Americans. 

The proposed changes would also allow states to opt out of the essential and preventive health care benefits mandated by the ACA. Currently, all health plans must cover certain key services including hospitalization, prescription drugs, mental health, laboratory, and emergency services. Of importance to the hereditary cancer community, BRCA genetic testing for qualified individuals and annual mammograms for women age 40 and over are currently covered with no cost-sharing. Coverage for these services could be in jeopardy under the new plan. 

While the White House would like a vote to occur the week of April 24th, this seems unlikely given that legislative text depicting the bill's revisions has yet to be released. 

We are closely watching the situation and continue to advocate for the needs of the high-risk, hereditary cancer community. 


March 24, 2017 - ACA Replacement Withdrawn Due to Lack of Votes to Pass Bill

House Speaker Paul Ryan withdrew the American Health Care Act, the proposed health care reform legislation, after failing to garner enough votes to pass it. FORCE continues to advocate that any ACA replacement must:

  • prohibit discrimination based on preexisting conditions
  • allow young adults to remain on family coverage until age 26
  • limit out-of-pocket costs for patients
  • restrict lifetime and annual caps on benefits
  • maintain coverage of essential health benefits and preventive care
  • sustain funding for cancer research, CDC and PCORI programs

We want to ensure that health care reform preserves or improves access to care for every American. FORCE will continue to advocate for the needs of the high-risk, hereditary cancer community. 

See our Advocacy Alert for information about what you can do and a letter template (downloads as Word file) you can use to contact your elected officials.


President’s Executive Order Provides Broad Directives That Could Weaken ACA

The day after his inauguration, one of Trump’s first official actions as President was to sign an executive order to “minimize the unwarranted economic and regulatory burdens of the Affordable Care Act.” Presidents use executive orders to give federal agencies direction on how to enforce laws. In this case, the order instructs the Department of Health and Human Services (HHS) and other agencies to use their existing powers to weaken ACA “to the maximum extent permitted by law.”

The day after his inauguration, one of Trump’s first official actions as President was to sign an executive order to “minimize the unwarranted economic and regulatory burdens of the Affordable Care Act.” Presidents use executive orders to give federal agencies direction on how to enforce laws. In this case, the order instructs the Department of Health and Human Services (HHS) and other agencies to use their existing powers to weaken ACA “to the maximum extent permitted by law.”

In essence, the order changes nothing immediately. Most of the provisions in the ACA can’t be changed by the President or HHS; they require action from Congress or a lengthy public comment period. Importantly, the executive order has no impact on coverage for those with preexisting conditions and other provisions outlined in ACA. However, the order does provide a philosophical directive that Federal agencies may use to stop enforcing certain components of ACA. The incoming Secretary of Health and Human Services—presumably nominee Tom Price—will have some broad powers, which could have a significant impact on interpretation and implementation of the law.  

For instance, ACA mandates that insurance plans cover a set of essential health benefits without charging for them, but it’s up to HHS to determine the specifics. The part of ACA that requires coverage (with no copays or deductibles) of annual mammograms for women starting at age 40, or BRCA testing for those who meet the personal or family history criteria, is not written into the law; it is how the law was interpreted by the Obama administration. In other words, coverage of these and other preventive services, now available at no cost to insured Americans, could change under new HHS leadership. This is potentially significant for the hereditary cancer community. 

The individual mandate is perhaps the most contentious piece of ACA. It requires that most people have health insurance or face a tax penalty. This is a component of ACA that the new Administration wants to weaken or eliminate. There are conflicting opinions about whether this is feasible, as the Supreme Court made it clear in a major legal challenge to ACA (National Federation of Independent Business v. Sebelius) that the individual mandate is essential to the operation of the ACA. In other words, it could be difficult for the Trump Administration to abolish or water it down without Congressional approval.

Some pundits, though, have suggested that Administration officials will seek to grant mass hardship exemptions from the individual mandate. This could lead to fewer young, healthy Americans buying health insurance. Insurers need people with fewer health care expenses to balance out less healthy people who have higher medical costs. Without an individual mandate, we could see skyrocketing insurance premiums in 2018 and beyond. The question is: How much would the new Administration prevent destabilizing the health care marketplace?

Trump and Congressional Republicans have vowed to avoid “pulling the rug out from anyone” by keeping ACA in place until they have a new plan. Details of that plan have yet to be provided, though, so we are left to anxiously watch and wait while the Administration debates how it will fulfill its promise to repeal and replace the health care law.

Stay tuned for more information on the potential impact of ACA repeal, including how funding for Medicare, Medicaid, CDC and research programs may be affected.  


January 17, 2017 - ACA Repeal Update

In the early hours of the morning last Thursday, the U.S. Senate voted to start the budget reconciliation process which instructs House and Senate committees to come up with Affordable Care Act (ACA) repeal legislation by January 27. This was, in essence, a procedural action to set a deadline for voting on the repeal of ACA funding.

A number of media outlets, as well as members of the public, interpreted Thursday's actions as an end to ACA. This is not the case. While the Senate's vote sets the stage for the process of repealing "Obamacare," it is only the first of many steps that must be taken. 

Despite broad consensus from the new administration that ACA should be abolished, legislators on both sides of the aisle have expressed concern about voting to repeal the law without a new plan to take its place. For this reason, it's likely that a reconciliation vote will be delayed while Republicans work to develop a viable alternative.

Even if Congress goes forward with a vote on reconciliation in the coming weeks, the earliest a repeal of ACA could be implemented is 2018. And, that may only be a partial repeal. Many ACA components, including insurance coverage for those with preexisting conditions and caps on out-of-pocket expenditures, cannot be repealed via the reconciliation process. Abolishing these provisions must be done through a different legislative process (not related to budgets or funding) which is likely to take much more time and effort. Most policy experts agree that the repeal and replace strategy will take 2-3 years to implement.

In Summary...
How does the 1/11/17 Senate vote impact members of the hereditary cancer community?

  • While laying the groundwork for partial repeal of ACA, this week's vote didn't change anything.
  • If you currently have health insurance, your policy will remain intact throughout the remainder of the 2017 plan year because contracts have already been signed. 
  • Important ACA protections for the hereditary cancer community such as coverage of those with preexisting conditions (i.e. a current or prior cancer diagnosis) will not be impacted by a reconciliation vote.
  • Previvors - diagnosis of a genetic mutation associated with increased risk of cancer cannot be used against you in regard to eligibility or rates for health insurance coverage. These protections are covered under the Genetic Information Nondiscrimination Act (also known as GINA) which is completely separate from the ACA and not under consideration for repeal. 

Action Item
Even if the recent vote didn't affect current health care coverage, change is definitely on the horizon. We urge you to contact your elected officials via phone or email to let them know your priorities in regard to health care coverage. Encourage friends and family to take action. The more people that elected officials hear from, the more likely they will be to protect key provisions of the Affordable Care Act. Visit to find contact information for your elected officials.

Check back here for regular updates and information about pending changes to health care and how they may impact the hereditary cancer community.

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