FORCE Blog

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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Posts Tagged ‘HBOC’

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

August 24, 2015

XRAYS Program Looks Behind the Headlines to Make Sense of Cancer Research

FORCE is proud to launch our new program, eXamining the Relevance of Articles for Young Survivors (XRAYS). Funded by the Centers for Disease Control (CDC), the XRAYS program was developed to meet a growing need as more and more medical research articles on breast cancer are making the headlines. With the rise of social media, more consumers are turning … + read more

August 9, 2015

Guest Blog: Attending ASCO as a Research Advocate

By Robin Karlin Thirty thousand health professionals, fabulous views of Lake Michigan and downtown Chicago, miles of escalators, fountains and crowded atriums, long lines at every Starbucks, session after session of the latest research and educational panels, and a fun evening at Shedd Aquarium. These were all part of my 2015 American Society of Clinical Oncology … + read more

April 13, 2015

Another Reason for People to Know Their BRCA Status

By sharing her BRCA status and news of her prophylactic surgeries with the world, Angelina Jolie Pitt has raised awareness about BRCA testing and hereditary cancer to new heights. Her op-eds have created the “the Angelina Effect,” a term describing how her celebrity has increased demand for these services. Still, many people who meet national … + 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

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

March 24, 2014

Challenges to HBOC Research Enrollment: Competing Cancer Treatment Studies

Research is the key to better medical options. In prior blogs, I outlined some of the barriers to completing hereditary cancer research. This is the next blog in our series about addressing the barriers to hereditary cancer research. Hereditary cancers make up a small subset of a larger disease state. About 7% of all breast … + read more

March 3, 2014

Health Care Providers Can Help Accelerate Hereditary Cancer Research

Why HBOC research is important Hereditary cancers constitute a small subset of a larger disease state. About 7% of breast cancers and 18% of ovarian cancers are due to a BRCA mutation. The HBOC community shoulders a disproportionate cancer burden, facing lifetime cancer risks that are higher than any other known population. Our cancers tend … + read more

February 21, 2014

FORCE 15: Reasons to Join FORCEs and Attend Our 8th Annual Conference

Need a reason to attend this year’s Joining FORCEs Conference? Here are 15 good ones: It’s the largest annual gathering by and for the hereditary cancer community.  Be a part of this landmark event. We make the latest science understandable and accessible. Hear experts clearly explain the science of hereditary cancer and make the latest … + 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

August 22, 2013

Hereditary Cancer Impact Is More Than Skin Deep

Articles about Angelina Jolie’s revelation that she underwent genetic testing and prophylactic mastectomy with reconstruction often emphasize her as one of the world’s most beautiful women, who is still beautiful after all that she has endured. This message can be reassuring; by going public, Ms. Jolie put a more positive spin on the stigmatizing effect … + read more

July 7, 2013

Fear, Bravery and HBOC

Recently the topics of BRCA and bravery have been in the news. Previvor Angelina Jolie made headlines when she announced that she carries a BRCA1 mutation and underwent prophylactic bilateral mastectomies. Singer Melissa Etheridge, a BRCA2 mutation carrier and a breast cancer survivor, labeled Jolie’s choice of BPM as “fearful” rather than “brave.” Personally, I … + read more

June 21, 2013

Thoughts on Turning 50: Recovery

The first time I met with my running coach, she had me run a quarter mile as fast as I could. As I neared the finish, I remember feeling like I was drowning. As soon as I finished she had me slow to a jog without stopping and timed me as I continued this very … + read more

Connect with others.

Call our Helpline

Our helpline offers peer support for people concerned about hereditary cancer. All calls are confidential. Call any time.

Join a Local Group

FORCE has outreach groups throughout the United States and in Essex, United Kingdom that meet periodically to offer peer support, and share resources.

FORCE:Facing Our Risk of Cancer Empowered