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This blog will cover topics of interest that affect our community. Unless otherwise stated, the blog articles will be written by Sue Friedman, Executive Director of FORCE.

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Government Regulations

December 6, 2016

What Does the Recent Election Mean For the HBOC Community?

by Lisa Schlager The results of the 2016 election and the pending change in administration have triggered renewed focus on the future of healthcare. FORCE released an official statement on the election’s impact on the HBOC community and I hope to address additional issues here. The hereditary cancer community has good reason to be concerned. … + read more

July 5, 2016

Cancer Screening Guideline Loopholes and Confusion Jeopardize Coverage of Services: Part II of Access to Care Series

by Lisa Schlager Over 2 million women in the U.S. are at high risk for breast cancer due to family history. Additionally, nearly a million Americans carry an inherited BRCA mutation and a number of other genetic mutations have also been linked to increased risk of breast, ovarian and other cancers. Several organizations develop cancer … + read more

March 2, 2016

NCCN Summit Explores Patient Perspectives of Value in Cancer Care

by Lisa Schlager Our January 8, 2016 blog introduced the emerging topic of value in cancer care and the importance of public participation in this discussion. On December 1, 2015, the National Comprehensive Cancer Network (NCCN) hosted a Patient Advocacy Summit titled Value in Cancer Care – Patient Perspectives in Washington, DC.  I was fortunate … + read more

January 8, 2016

Value in Cancer Care: Including Consumers in the Dialogue

by Lisa Schlager, Vice President of Policy and Community Affairs Value and access to appropriate health care is of vital importance to patients and their families, particularly as cancer diagnoses continue to rise—up more than 20 percent in the past decade—and health care costs steadily increase. In this environment, more attention is being paid to … + read more

October 1, 2015

Guest Blog: An HBOC Week Message from Representative Wasserman Schultz

By Representative Debbie Wasserman Schultz I’m honored to have an opportunity to work with FORCE to promote awareness about Hereditary Breast and Ovarian Cancer. FORCE plays a crucial role in the cancer awareness and advocacy community, particularly for those of us who have been personally affected by genetic cancers. We share the fundamental belief that … + read more

September 27, 2015

Beyond Awareness: Working to Improve Outcomes for People Facing Hereditary Cancer

This week we mark National Hereditary Breast and Ovarian Cancer (HBOC) Week, and on Wednesday, National Previvor Day. This awareness campaign acknowledges the over one million people and families in the United States affected by hereditary cancer, due to a BRCA, PALB2, PTEN, ATM or other mutation linked to these cancers or a strong family history … + read more

September 5, 2015

Proposed Regulatory Changes Will Undermine Patient Protections Under GINA

Employees will be faced with a difficult choice—either disclose personal health information or maintain their privacy and pay more for health coverage. by Lisa Schlager Personal privacy and workplace protections are in jeopardy with recent proposals by the Equal Employment Opportunity Commission (EEOC). In April, the Commission proposed revising and reinterpreting the Americans with Disabilities Act (ADA) … + read more

June 2, 2015

An Advocacy Win for Cancer Survivors Facing HBOC

  We frequently mobilize our community to challenge health policy barriers to medical care. It’s always gratifying when we are able to report wins, when FORCE organized and amplified your voices to affect positive change. Clarification of guidelines paves the way for eligible cancer survivors to receive BRCA counseling and testing at no cost Guidelines … + read more

May 9, 2015

Newly proposed United States Preventive Services Task Force (USPSTF) breast cancer screening guidelines fail to address the needs of many women

The United States Preventive Services Task Force (USPSTF) has published its Draft Breast Cancer Screening Guidelines. Once finalized, these recommendations will replace current guidelines that were published in 2009. The proposed recommendations are specifically to guide decision-making about breast cancer screening for women of average breast cancer risk. The guidelines are particularly important for patients … + read more

March 31, 2015

Angelina Jolie and Patient-Centered Outcomes Research

Kudos to Angelina Jolie Pitt for sharing her BRCA status and news of her prophylactic surgeries with the world, soon after her risk-reducing mastectomy two years ago and again last week when she wrote about her bilateral salpingo-oophorectomy. Her two op-eds brought an unprecedented level of awareness about hereditary cancer, making words like “mutation” and … + read more

March 5, 2015

Regulating the Next Generation of Genetic Tests

Gene sequencing – also known as genetic testing – is the process scientists use to analyze DNA in search of mutations and variations in an effort to discover more about the connection between genes and traits, health and disease. Since the discovery of BRCA 1 in 1994, the sequencing of genes to find mutations has … + read more

February 3, 2015

Spreading HBOC Advocacy to Japan

Last month I had the honor of giving two talks at a conference organized by the Japanese HBOC Consortium in Tokyo: one for patients and the other for health care providers. Most people in Japan have little input into their health care decisions and do not question their doctors’ recommendations. The conference organizers hoped that … + read more

June 29, 2014

FDA Approval of Promising Targeted Therapy Likely Stalled Until More Research Studies are Completed

Wednesday, June 25, 2014 was a pivotal day for our community. It began with promise and ended with disappointment. For the first time ever, a treatment targeted for BRCA-associated cancers was considered for approval by the FDA. Yesterday the FDA’s Oncologic Drug Advisory Committee (ODAC) held a hearing to consider FDA approval of the drug … + read more

February 1, 2014

Patient-Centered Outcomes Research Institute (PCORI): Research Done Differently

What is PCORI? The Patient-Centered Outcomes Research Institute (PCORI) is a new government-supported agency that approaches medical research with a focus on the patient to improve health outcomes. Aiming to answer medical questions that are most important to patients and collecting data from “real world settings,” this differs from traditional research, which typically occurs at … + read more

December 8, 2013

Preventive Guidelines Discriminate Against Cancer Survivors

FORCE has created a change.org petition to ask the United States Preventive Services Task Force to change their guidelines to include cancer survivors. You can read more about the issue and the petition below.   The United States Preventive Services Task Force (US The panel wields considerable power over consumer access to preventive health care … + read more

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