SUE FRIEDMAN, DVM

 diagnosis at the age of 33 that felt like it was “out of the blue” led to the creation of 

Facing Our Risk of Cancer Empowered (FORCE)

Founder and executive director Sue Friedman was inspired to found the organization following her own cancer diagnosis and eventual linkage to family history with cancer. It wasn’t until 1996, “the early days of genetic testing,” that Friedman read an article about hereditary cancers and genetic testing. She then began to understand some of the factors that put her at risk.

At the 2019 American Society of Clinical Oncology Annual Meeting, Friedman discussed her journey and why she immediately began FORCE following the conclusion of her treatment. “I didn’t think anyone should have to face this challenge alone,” she said.

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Sue Friedman, founder and executive director of FORCE, discussed how a breast cancer diagnosis at age 33 and a family history of cancer led to the creation of Facing Our Risk of Cancer Empowered.

'Out of the Blue' Diagnosis Linked to a Family History of Cancer Now Empowers Others

Vaccines are an example of successful public health strategy to prevent disease. Thanks to massive vaccine efforts, devastating diseases like polio and smallpox are now almost unheard of in the United States and globally. Like so many other public health issues, the impact of vaccines and infectious diseases go beyond the individual. Vaccines are part of the “herd health” strategy that I learned about in veterinary school. That means that vaccinating everyone protects the individual and society as a whole. People who have suppressed immune systems or who cannot be vaccinated for medical reasons are then largely protected. This strategy works best when everyone cooperates, works to protect each other, and acts for the common good.

Vaccines are effective, but like many medical interventions they do not work 100% of the time. Certain members of the population are particularly vulnerable to infectious disease, even when they are vaccinated. In some instances, newborn infants who are too young to be vaccinated may not receive protection from their mothers’ milk. People with diseases that affect their immune systems may be also be vulnerable. And certain treatments—especially chemotherapy and other cancer treatments&mdash;can prevent an effective immune system response to diseases like measles. This means that an infection&mdash;even one that is usually nonfatal&mdash;can be life-threatening to people who are undergoing treatment for cancer.

Vaccines can also help prevent cancer. The Human Papilloma Virus (HPV) is linked to cervical cancer and head and neck cancers. Vaccines for HPV are now part of the recommended vaccine schedule for children and young adults.

According to experts from the National Institutes of Health

, “When levels of vaccine coverage fall, the weakened umbrella of protection provided by herd immunity—indirect protection that results when a sufficiently high percentage of the community is immune to the disease&mdash;places unvaccinated young children and immunocompromised people at greater risk. This can have disastrous consequences with measles.” In 

their commentary “Measles in 2019—Going Backward” published in the 

, experts describe a case in which “a single child with measles infected 23 other children in a pediatric oncology clinic, with a fatality rate of 21 percent.”

As a cancer survivor, I found the above story chilling. I recall when my white blood count dropped dangerously low during my second dose of chemotherapy. I was terrified to go out in public until injections to stimulate my immune system kicked in. Cancer treatment is challenging enough, without the added threat of a measles outbreak caused by decreased vaccinations. This blog is a call to action on behalf of our vulnerable and immune suppressed constituents.

Creating doubt and confusion about science

 health topic is troubling and potentially dangerous. As a cancer advocacy organization focused on patient education, FORCE created our CDC-funded 

“eXamining the Relevance of Articles for Young Survivors” (XRAYS) program in 2014

 to address the dangerous trend of misleading digital information about cancer. We find ourselves frequently fact-checking media reports with headlines like, “A cure for cancer? Israeli scientists may have found one” and “‘Angelina Jolie gene’ may be linked to Alzheimer’s, researchers say.” The focus of XRAYS is to help our community understand the true meaning of the research behind the headlines and how it relates to their care. XRAYS is a reliable source of information that explains science in plain language, rates its relevance, connects patients to guidelines, and corrects misinformation or misreporting by the media.

Inaccurate health news is not limited to breast cancer. In “

Evaluating the Quality of Health Information in a Changing Digital Ecosystem,

” health communication researchers searched Google for health information on diabetes. They found common tactics used by websites pushing “natural cures” that could be harmful to patients:

mixing in scientific information to make unproven claims sound more credible

sowing skepticism about the health care establishment

adding unconfirmedpersonal stories from individuals that backed their perspective

making promises of unrealistic outcomes such as “cure”

According to the authors, the misinformation ranged from benign to “deliberately deceitful.” They cautioned, “The epidemic of fake or controversial health news presents formidable challenges for consumers and health educators.”

There are many examples of dangerous and misleading health communications across many conditions, but few have been as noticeable as the coordinated attack against vaccines.

Given the threat to public welfare, researchers have been studying the origins and spread of false health information. Unsurprisingly, Facebook facilitates the spread of vaccine misinformation. For example, 

a Pittsburgh pediatric office that posted vaccine information on its Facebook page 

became the target of a coordinated, sometimes vicious anti-vaccine campaign by individuals who were mostly from other areas. 

 found accounts associated with Russian trolls creating discord on posts about vaccines on both sides of the issue.

We all need to do our part to combat fake or inaccurate health news. Providers from all areas of medicine can work together to reinforce the importance of infant, childhood and adult vaccines. Those of us who work as patient advocates—particularly those who reach patients who are vulnerable to infectious diseases&mdash;have an obligation to disseminate evidence-based information about the importance of vaccines. 

 and the World Health Organization’s (WHO) guide, “

How to Respond to Vocal Vaccine Deniers in Public

” are sources of credible information. The public can also play a part by being informed consumers of health information. Be careful about sharing health information, especially when it runs counter to national guidelines. Ask people for their sources of scientific information, see if health information websites list a scientific advisory board, and when in doubt, share the information with your health care team. Post credible information from trusted sites like the CDC from your own social media account rather than spending time arguing online with posters who may actually be trolls.

Vaccines may not be a topic we speak about in our day-to-day lives, but let’s all take a moment to amplify this important public health message to protect people most vulnerable to infectious diseases.

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A call to action&mdash;We all need to do our part to combat fake or inaccurate health news. Misinformation about any health topic is troubling and potentially dangerous.

Anti-vaccine Hype is a Threat to People with Cancer

OVER MY 19-YEAR career in patient advocacy and as a 20-year breast cancer survivor, I have read my share of media reports on cancer research. I have learned to view the cycle of health media with skepticism. Too often, hope turns to disappointment as new discoveries fade from the media spotlight to obscurity.

Media reports of health news frequently contain misinformation and hype. This can be extremely confusing or dangerous for people who are making health care decisions. In her 2009 New England Journal of Medicine perspective, “Communicating Medical News — Pitfalls of Health Care Journalism,” health policy journalist Susan Dentzer wrote, “Journalists reporting on health care developments deliver public health messages that can influence the behavior of clinicians and patients.” She added, “I believe that when journalists ignore complexities or fail to provide context, the public health messages they convey are inevitably inadequate or distorted.”

As an organization supporting informed medical decisions for people and families affected by hereditary cancers, Facing Our Risk of Cancer Empowered, better known as FORCE, has observed the real-world consequences for consumers of health media hype and misleading stories on cancer research. Too often, headlines like “BRCA Gene Mutations Also Linked With Salivary Gland Cancer” or “‘Jolie Gene’ Linked to Alzheimer’s Disease” overstate the clinical significance of research and cause unnecessary concern or panic.

FORCE recognized an urgent need for tools to help people understand emerging research and discern if and how it affects their medical care. With funding from the Centers for Disease Control and Prevention, FORCE launched its eXamining the Relevance of Articles for Young Survivors (XRAYS) program in 2015. Using lay language to summarize media reports about breast cancer research, weekly XRAYS articles provide people with relevant context for their medical decision making.

Each XRAYS article evaluates and rates the relevance of the research to medical decisions and care. It also assesses the media’s coverage of the research, which may range from high-quality, five-star reporting to misleading or inaccurate coverage worthy of only one or two stars. All XRAYS articles are reviewed by a member of FORCE’s scientific advisory board before being published.

In an XRAYS blog, journalist Amy Wu wrote, “At a time when fake news is making headlines, programs such as XRAYS are all the more pivotal for patients, medical practitioners and yes journalists too…It sends a message out to media organizations that they are accountable for the information acquired and delivered.”

The XRAYS team recommends that people ask themselves the following questions to help critically evaluate health reports in the media:

Read the entire story. Sensational headlines may serve as click-bait, but sometimes a good article follows an erroneous headline.

Research on mice or cell lines is usually very preliminary. Even if the science is sound, it may be years away from testing in humans and incorporation into medical practice. For research in people, small studies usually require validation on larger populations before guidelines are changed. Also, consider if the participants share your medical situation. The more similarities between you and the population studied, the more relevant the results will be to you.

Balanced articles include quotes from experts outside the research team. This is important because many health media reports start with a press release that focuses on an institution’s contribution to science rather than the immediate impact on patient care. Visit the website of professional organizations such as the National Comprehensive Cancer Network, which has expert panels that review new research for incorporation into guidelines for care.

Many health media stories are based on research journal publications. Google the journal and researcher’s name to find the scientific article. Some may be technical, but reading the abstract can help you understand the investigators’ findings.

Share articles that you feel may affect your care or medical decision making with your doctor.

The media don’t always cover the most important stories. For hereditary cancer, many stories involve new drugs, genetic testing and Angelina Jolie. But research on topics such as long-term survivorship, metastatic cancer, quality of life and health equity do not receive much attention. Visit the United States Library of Medicine’s website, PubMed, to subscribe to alerts when articles are published on topics that interest you.

From discovery to incorporation into medical care, research can follow a slow, winding path with many years, headlines, false starts, contradictions and media reports in between. It’s worthwhile to arm yourself with resources like XRAYS to become an informed consumer of health media.

Visit FORCE’s XRAYS program at facingourrisk.org/ XRAYS

SUE FRIEDMAN was diagnosed with breast cancer 20 years ago at age 33 and subsequently learned that she carries a BRCA2 mutation. A veterinarian by training, Friedman founded the national nonprofit organization Facing Our Risk of Cancer Empowered (FORCE) in 1999 and left her practice several years later to serve as the organization’s full-time executive director.

FORCES’s XRAYS program sorts through cancer research-related news to help patients make informed decisions.

SUE FRIEDMAN, DVM

'Out of the Blue' Diagnosis Linked to a Family History of Cancer Now Empowers Others

Anti-vaccine Hype is a Threat to People with Cancer

Behind the Hype: Navigating Cancer News

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