Maximizing Access to BRCA Testing by Involving Genetics Experts

Note: The below is an updated version of a post in 2008 right after the documentary In the Family was released, and actress Christina Applegate announced she had a BRCA 1 mutation. Five years later, this post is more relevant than ever. 

As the dust clears since Angelina Jolie went public with her BRCA status, the impact of her revelation has been mixed. On the positive side, the increased awareness of HBOC has opened up a public dialogue on genetic counseling, testing, cancer prevention, and access to care and has encouraged people to educate themselves about these topics. More people are considering their family history of cancer, pursuing genetic counseling and testing, and learning their options to prevent or to detect cancer earlier. Following these steps will save lives. Unfortunately, people’s initial inquiries about testing are not always met with credible information. We know from experience that where people go for additional information, resources, and support matters for their outcomes. FORCE has documented cases where people received inaccurate information about genetic testing which led to negative health consequences.

Fortunately, many people are finding their way to the expert-reviewed information and resources from FORCE and are being referred to genetics professionals. Calls to our toll free helpline have increased in direct proportion to media reports about BRCA. One of the frequent requests we receive is about financial assistance for genetic testing. Many of these calls are from individuals who have a family history of cancer and health insurance, but their insurance has denied covering genetic testing.

Many of these insurance denials and high out-of-pocket costs related to testing occur because people have not first met with a qualified expert in cancer genetics. When you consider the $3,000+ cost for “full-sequencing” BRCA 1 and BRCA 2 testing, where the entire gene is evaluated, it’s easy to understand why genetic testing is beyond the means of many people. However, under certain circumstances, a less extensive test may be more appropriate and can lower the price of testing by thousands of dollars. In other cases the choice of which member of the family receives genetic testing first can also affect cost and insurance coverage and risk assessment for the entire family. Some of these insurance denials stem from an uninformed health care provider ordering the wrong test or not identifying the best first person in a family to receive testing.

The high cost of genetic testing for BRCA is due to the fact that only one company—Myriad Genetics—can perform the gene test in the United States. They were granted exclusive patents on the BRCA genes and consequently control everything about BRCA testing, including the price. Even as the cost of genetic technology has decreased, Myriad keeps raising the price of their BRCA test.

A specially trained genetics expert will first assess an individual’s family medical history, determine which test is most appropriate, and identify which family member should be tested first. Seeing a genetic counselor prior to genetic testing can make the difference between having a test denied or covered by insurance. In fact, for people who meet specific National Comprehensive Cancer Network (NCCN) standard-of-care guidelines, many insurance companies, will pay for both genetic counseling and testing. The Patient Protection and Affordable Care Act also outlines that people who meet certain guidelines qualify for genetic counseling and testing which must be covered by their insurance without copay or deductible. A team of genetics and cancer experts can be good advocates for insurance coverage of genetic testing.

When genetic testing proceeds without counseling there is a higher likelihood of inappropriate or costlier testing. Myriad is the only entity who stands to benefits from inappropriate BRCA testing. In 2009, FORCE presented testimony to the Secretary of Health’s Advisory Committee on Genetics outlining our concerns about the aggressive marketing that was leading to increased cost and harm to our community. These concerns still remain true.

The American Civil Liberties Union (ACLU) has filed a lawsuit to invalidate Myriad’s patents. FORCE has filed an Amicus Brief in support of the ACLU’s case. The Supreme Court has heard the case and they are expected to rule by this summer. Until the cost of genetic testing goes down, genetic testing will remain out of reach for too many people, even for those who meet standard-of-care guidelines. On a national level, financial support is limited. People who meet certain criteria and have annual income below the poverty level may qualify for testing under Myriad Genetics Laboratories financial assistance program. For people whose insurance does not cover the full cost of testing, co-pay assistance is available through the Cancer Resource Foundation. Regionally, FORCE has been able to navigate many people who contact us for assistance to programs in their area but there are still many gaps in access to care.

For the uninsured or underinsured women who receive assistance for genetic counseling and testing, what then? Experts recommend annual mammograms and MRI for BRCA-positive women ideally beginning at age 25. Patient Services Incorporated (PSI) has a program funded by Right Action for Women which covers the cost for MRI for eligible young high-risk women. The National Breast and Cervical Cancer Early Detection Program, provides free mammograms for women over 40. Gaps still remain for financial assistance for breast MRI for high-risk women over age 40 and for mammograms for women younger than age 40. Financial resources for women who choose to undergo  prophylactic surgery is even more limited. Like most disparity issues in health care, the needs are many and existing resources are few.

With the media spotlight on hereditary cancer, and demand for BRCA testing increasing, FORCE has continued to emphasize the importance of referral to appropriate experts for genetic counseling before and after genetic testing. Until the disparity and cost of testing issues are resolved, given that genetic testing is expensive, financial resources are limited, and not everyone has equal access to care, the best way to maximize the number of appropriate tests, is to include genetic counseling with experts prior to the ordering of genetic tests.

Every Story Matters

Since Angelina Jolie recently shared her personal experience with genetic testing and prophylactic surgery in the New York Times, public awareness of hereditary cancer is at an all-time high. The media surrounding Ms. Jolie’s revelations has also provided unparalleled opportunities for members of the HBOC community to share their personal accounts as well.

How did you learn about hereditary cancer? Was it a chance meeting with someone who was high risk? A brochure? A TV health show? For me, it was a magazine article I read back in 1997. When I was diagnosed with breast cancer at age 33, my doctors recommended a single mastectomy on one side, but they never told me about genetic counseling or testing, despite my having several red flags for a hereditary syndrome: young onset breast cancer, Jewish background, and a paternal grandmother who died young of abdominal cancer. I certainly would have made different surgical choices if I had known I carried a mutation. The article motivated me to pursue genetic counseling and testing, and ultimately, I chose prophylactic surgery, which discovered early cancer in my healthy breast.

All of our stories are important. Each story we share and every article about HBOC raises awareness and provides an opportunity for someone to recognize himself or herself in the writing and to pursue genetic counseling, testing, and risk-management options.

In a brilliant example of how awareness can save lives, reporter Stacey Sager first shared her hereditary cancer story on WABC-TV in New York in October 2011. Stacey was on a campaign to raise awareness and save lives. A 13-year breast cancer survivor at the time, Stacey had undergone testing for BRCA and found that she carried a BRCA1 mutation. Testing and BSO saved her life. As Stacey bravely allowed cameras to document her BSO, early precancerous changes were found in her fallopian tubes. (Ovarian cancer is rarely found early, other than during prophylactic surgery.) When Stacey wrote a guest blog for Thoughts from FORCE, a reader responded with the following comment, “For years my doctors have been trying to get me to take the BRCA testing because of my family cancer history, but I simply was not ready. After watching your televised story I went to the doctor the next week for my BRCA test.”

Stacey’s story resonated with and motivated more than one person. Celebrity singer/songwriter Kara DioGuardi happened to catch Stacey’s story while in New York City while she was appearing in the Broadway production of Chicago. Kara, who was interviewed by People magazine, shared that a chance viewing of Stacey’s story changed her life. Kara knew about her family history of cancer, but she didn’t know about BRCA testing until that crystalizing moment. When she returned to L.A., she immediately sought care for genetic testing, and then underwent BSO. A dear friend who agreed to be a surrogate for Kara and her husband was implanted with Kara’s last remaining embryo from prior IVF and carried their baby to term; little Greyson is now 3 months old. Kara shares more of her story in a moving interview where she gets to meet Stacey in person and thanks her for publicly sharing her story and possibly saving her life.

Experts estimate that less than 10% of the almost 1 million people in the United States with a mutation are aware of their high-risk status. We know that risk assessment and intervention can improve survival for high-risk individuals. But people cannot take action if they are unaware of their risk. It is up to us to raise the profile of HBOC until every person has access to the tools, information, and health care experts to assess their risk, and every high-risk person has the education, support, and resources they need to make informed decisions about their risk.

In her Voices of FORCE account for our Joining FORCEs newsletter, member Lita Poehlman shared how a chance meeting with a FORCE member led her to genetic counseling and testing, and subsequent prophylactic surgery discovered precancerous changes. She credits that chance meeting with saving her life. These personal anecdotes remind us that every act of sharing is significant and every story matters!

Other publications share accounts from the HBOC community, including several  memoirs: Previvors, Pretty Is What Changes, What We Have, Apron Strings, Beyond the Pink Moon, and Pink Moon Lovelies. The documentary In the Family (which is available for free viewing online until May 26) follows the intimate story of filmmaker Joanna Rudnick and several families facing hereditary cancer. Our community blog page has links to the HBOC  blogosphere, and the Voices of FORCE section of the website is filled with your stories. You can add your story and voice to our pages. Writing and sharing your accounts raises awareness about the impact that hereditary cancer has on everyday people, inspires others to learn more, engenders compassion and understanding for our community, and saves lives.

Thoughts on Turning 50: Transformations

For many people, turning 50 is an unappreciated milestone that they would rather not acknowledge, but I feel differently. Some people find themselves going through a midlife crisis; me, I’m facing 50 by signing up and training for my first marathon!

Like most of us I’ve undergone many transformations in my life. Some have been intentional while others resulted from circumstances beyond my control. Recently while

at 26 I was neither fit nor happy

looking for old photos, I ran across some pictures of myself when I was in my 20s and 30s. I was not fit then, and I didn’t resemble the person I am now. At 50 I am the healthiest, most physically active, and most content that I have ever been in my life. Many people who have known me only in the last few years have commented that they can’t imagine me when I was not active, energetic, and happy. So running across photos of a younger me was a sobering reminder of the effort and motivation that it took for me to be where I am today.

Much of my motivation for becoming more fit was my breast cancer diagnosis at age 33 and a recurrence the following year. Both prompted me to advocate for myself and do everything I could to improve my chances of survival (increasingly, research validates the benefit of a healthy diet and active lifestyle for surviving cancer). My other motivation was my family. I lost my mother at a young age. Her weight and lack of fitness contributed to her young demise. I was determined not to repeat the same mistake; I wanted to be around as long as possible for my son!

Transforming myself to a marathon runner won’t be easy, but I’ve faced harder challenges and become stronger because of them. My most difficult transition came when I was diagnosed with breast cancer at age 33. All my life cancer had been a subject avoided or treated with dread. As I went through treatment I felt the stigma and isolation of cancer. Strangers approached me when I was out with my son, my face without eyebrows or lashes, my head without hair wrapped with a scarf that tipped them off that I was someone with cancer.  Some people offered advice or encouragement, but others treated me with pity. I didn’t like this negative attention, which left me feeling uncomfortable and devalued.

Almost as difficult was the transition to my post-cancer life. Even after treatment ended, I felt different from my friends and peers. Dealing with uncertainty about my future and post-treatment depression, I didn’t feel like I had anything to offer them. The transformation that allowed me to re-enter life, find a “new normal,” and make new friends post-cancer didn’t happen overnight. It was almost a decade before I was emotionally ready to make friends outside of the cancer survivor and previvor community.

Advocating for the HBOC community became more important and rewarding than being a vet.

My transformation from veterinarian to patient advocate was also gradual and not entirely voluntary. I wanted to be a veterinarian for as long as I can remember. Once I achieved my dream, I loved my practice and the work. I loved helping animals and people. But my motivation for founding FORCE and transitioning to director was more powerful than my love of veterinary medicine. There were many great practicing veterinarians but there was only one organization devoted to hereditary breast and ovarian cancer. My own isolation, confusion, and loneliness during my hereditary cancer journey led me to found FORCE so no one else would have to face the hereditary cancer journey alone.

Now at age 50 I’m in the best shape of my life and ready to take on a new challenge!

Now, as a 50-year-old—an age I never thought I would reach—I am ready to face a new challenge: entering the Marine Corps Marathon. My motivation is two-fold. Although I now love exercise and being fit, the demands of a marathon reach beyond fitness. It also requires commitment, discipline, perseverance, endurance, and focus. Training to run a marathon at age 50 is my way of choosing how I transition to middle age and being able to face the next half-century on my own terms. My other motivation is to benefit the community and organization that I have dedicated my life to serving. I hope that my marathon quest motivates others to try to achieve their goals. And importantly, I hope to raise funds for FORCE and encourage others to sign up for Team FORCE for the Marine Corps Marathon.

I am not a natural athlete; the photo of a younger me confirms this. If after a half-century this formerly sedentary survivor can transform herself into an athlete, anyone can do the same. I hope my efforts inspire others to pick their own goals, find their personal motivation, and pursue their own transformation.

Gene Discovery, Patents, and the Community

Recently a dear friend sent me a link to an article in the February 1996 issue of Nature Medicine. The article by journalist Adam Marcus covered a media event and panel of women’s rights advocates expressing concern about Myriad’s impending patenting of the BRCA1 gene. Panelists declared unregulated genetic testing to be the coming century’s foremost threat to individual liberty. Incredibly, 17 years after the publication of Adam Marcus’ article, the debate is still ongoing—the issue of gene patenting and the consequences of lacking regulation regarding gene patents are still present and as relevant as they were then.

Admittedly, I missed this article the first time around. In 1996, I was more likely to be reading the Journal of the American Veterinary Medical Association than a human medical journal. With a toddler, a budding veterinary career, and no significant family history of breast cancer, my focus was not on hereditary cancer. In fact, genetic testing and gene patents were furthest from my mind. But my diagnosis with breast cancer eight months later and subsequent revelation that I have a BRCA2 mutation changed that.

When I was first tested for a BRCA mutation in 1998, I was fortunate; my testing costs were covered by my health insurance. I was very grateful to have access to the test; my gratitude extended to the laboratory that made the test available to me. Although I was initially tested without genetic counseling, I went to MD Anderson Cancer Center for a second opinion and eventually found my way to a genetics expert and had access to up-to-date and credible information from experts. It wasn’t until I became immersed in my work with FORCE that I became aware of deeper issues that were the consequence of Myriad holding patents on the BRCA genes.

In 2009, Joanna Rudnick released her documentary In the Family, which shined a spotlight on Myriad’s gene patents and some of these consequences. The documentary included an eye-opening interview with Dr. Mark Skolnick, founder of Myriad Genetics. Joanna questions how a gene—a product of nature—can be patented, saying “It’s like patenting your thumb.” Skolnick compares Myriad’s patents on the BRCA genes to patents for ipods, telephones, and computers, and cavalierly asserts “there’s no controversial patent. It’s all very easy to understand if you take the time.”

In the film, Joanna brilliantly follows the Myriad interview with an interview of Dr. Mary-Claire King, who was credited with identifying the location of the BRCA gene when she was a researcher at University of California at Berkeley. Dr. King has dedicated herself to the research that proved the existence of hereditary breast cancer gene mutations. Her research laid groundwork that sent many laboratories racing to be the first to isolate and clone the gene for genetic testing.

In Rudnick’s film, Dr. Skolnick says, “I think the single greatest inventive thing I did was to create Myriad. We did it to win the race…and we won.” Asked point-blank why the cost of the test is increasing, Dr. Skolnick replies, “that’s a good question, and I think there’s a point at which we have to start looking at decreasing the cost of the test.” Yet, four years after the documentary was released, the cost of testing has gone up—BRCA testing is more expensive, even though the technology for sequencing DNA has become less expensive.

The gist of Dr. King’s interview starkly contrasts with Dr. Skolnick’s statements. Dr. King speaks about genes for which she holds patents, saying, “The critical thing about the patents we hold is that none of them are exclusively licensed. So they are completely open for anyone to use for research purposes and any company that wishes to license them can license them for a trivial amount of money.” King mentions that her last royalty check amounted to $2.73. In contrast, the February 6 edition of the Salt Lake Tribune reports Myriad’s earnings: ”Myriad projects full-year 2013 revenue will fall between $575 million and $585 million. That would be a 16 percent to 18 percent increase over fiscal 2012.” The contrast is apparent and appalling.

Over the years, FORCE has appealed to government agencies and spoken to the health care community and the public regarding Myriad’s exclusive patent, and explained how the corporation’s marketing strategies and policies have increased the burden on the hereditary cancer community that we serve. In 2008 and again in 2009 we testified to the Secretary’s Advisory Committee on Genetics Health and Society, expressing our concerns with direct-to-consumer marketing of genetic tests, and specifically Myriad’s marketing practices, which we feel encourages BRCA testing without first receiving genetic counseling from qualified experts trained in cancer genetics. In our opinion, their aggressive marketing strategies have been harmful to members of our community.

In 2009, the American Civil Liberties Union filed a lawsuit challenging Myriad’s patents on the BRCA genes. On April 15, 2013 the U.S. Supreme Court will hear oral arguments on gene patenting. This hearing will represent the culmination of four years of the legal tug-of-war between Myriad Genetics and the plaintiffs, which included the ACLU and a long list of individual, advocacy, and health care professional groups. FORCE agrees with the ACLU that exclusive gene patents negatively affect access to care and research and we have filed an Amicus (Friend of the Court) brief on behalf of plaintiffs. You can read our testimony to the United States Patent and Trademark Office on the topic of how exclusive gene patenting impacts research and access to care. The Supreme Court oral arguments will be open to public participation.

For those who wish to learn more about Dr. King’s work, Decoding Annie Parker is a new  movie that follows the parallel lives of Dr. King and Annie Parker, a Canadian woman whose family was impacted by hereditary cancer. Based on a true story, the film raises the profile of Dr. King’s contribution to the discovery of hereditary breast and ovarian cancer syndrome and the BRCA1 gene mutation. It is sure to resonate with many in our community. FORCE is a proud charity partner of the movie, which stars Helen Hunt as Dr. King. A special screening will be held April 2 in New York City. FORCE will hold  screenings of the film in other cities. Stay tuned for updates.

Hopeful Progress in Ovarian Cancer Prevention Research

In 2008 FORCE conducted a survey to learn about research priorities for the HBOC community. We learned that women want better methods for ovarian cancer detection and prevention for ourselves, our children, and future generations. For this reason, we have worked closely with researchers exploring new options and we have carefully followed and shared with our community the progress in ovarian cancer detection and prevention.

Since BRCA testing became available, experts have recommended bilateral salpingo-oophorectomy or BSO (removal of the ovaries and fallopian tubes) for women with mutations between the ages of 35 – 40 or after childbearing is completed. Until large studies on women with mutations were completed, there was little data and only common sense to back up this recommendation. Later, research proved that for women with BRCA mutations removing the ovaries and tubes lowers the risk of developing and dying from breast cancer and ovarian cancer. I recall when the studies were published and the media was flooded with articles about how this “simple surgery” can lower risk. At the time, I was about 3 years out from my BSO at age 35 and dealing with significant surgical menopause side effects. I recall thinking, “Simple for whom?”

Don’t get me wrong; BSO is often an outpatient procedure with minimal surgical risk and scarring. The research on risk and survival is incredibly important and significant, and finally proved what experts long suspected. But the use of the term “simple” made it seem like these decisions were easy. On a personal and professional basis, and almost daily, I am reminded how difficult the decisions are. Many women recover quickly after surgery and their quality-of-life remains the same. But others suffer from side effects and long-term health and quality-of-life consequences from early menopause. The decision for surgery can be difficult and consequential for many women.

In the last few years, studies on high-risk women suggest that many ovarian cancers in BRCA gene mutation carriers may actually start in the fallopian tubes. In 2009 and 2010 at our annual conference experts presented the possibility that early detection or prevention focused around the fallopian tubes might allow women to temporarily delay BSO until closer to natural menopause. But medical experts need evidence that it is safe and effective before they can recommend salpingectomy (removal of the fallopian tubes) as a risk-reducing option. This requires a research study comparing outcomes of women who have salpingectomy, women who have BSO, and those who choose surveillance. The design of such a study faces several challenges. A big concern has been whether or not high-risk women would be willing to participate in a prevention study examining fallopian tube removal followed by removal of the ovaries later.

To answer this question, in 2011 FORCE conducted a survey on attitudes of high-risk women towards participating in ovarian cancer risk-reduction research. Preliminary results were presented at our 2011 annual conference and shared on our blog. Almost one-third of the 333 respondents would consider participating in a prophylactic salpingectomy study. We shared this finding with the research community as evidence that a salpingectomy study would be feasible and that women would enroll in such a study.

At our 2012 conference, gynecologic oncology experts Dr. Illana Cass and Dr. Douglas Levine presented the pros and cons of further research on salpingectomy to lower the risk in high-risk women.  The presentation used a debate format and presented two sides of the salpingectomy issue:

Arguments against developing a salpingectomy study included:

• Although many cancers in high-risk women may start in the fallopian tube, we have no proof that all ovarian cancers begin in the tubes.
• The benefits of salpingectomy are unknown and likely less substantial than BSO.  The surgery is unlikely to impact breast cancer risk. Meanwhile, there are well-documented benefits of BSO for mutation carriers.
• Many experts are concerned that women who undergo surgery to remove only the fallopian tubes will not return for additional surgery to remove their ovaries after they undergo natural menopause.
• Designing such a study would require a large, costly, cooperative research effort that would take over a decade, thousands of high-risk women participating, and massive recruitment and follow-up effort.

Despite these valid concerns, there were strong arguments presented in favor of studying salpingectomy as a risk-reducing option for high-risk women, including:

• Salpingectomy might serve as an “interval surgery” to manage and lower risk in high-risk women who are not ready for BSO and would otherwise opt for surveillance only.
• Women who undergo salpingectomy can maintain their ovaries longer and avoid long-term medical consequences of surgical menopause.
• This type of large-scale research would provide valuable information about development, prevention, and treatment of ovarian cancer for women with BRCA mutations and those without.

Both presenters at our conference agreed on one important conclusion: the time is right for additional research on salpingectomy.

Fortunately, other medical experts agree. During the Gynecologic Oncology Group meeting this January, the Cancer Prevention and Control Committee approved further development of a concept to design a feasibility study of risk-reducing salpingectomy. Many proponents, including the National Cancer Institute’s Division of Cancer Prevention and FORCE enthusiastically endorsed designing such a study. It’s important to note that despite this progress, it still may be more than a year before a salpingectomy study would open at GOG sites around the country.

We know that these studies are needed and that many high-risk women would consider participating in them. As with the development of new PARP Inhibitor research studies (which I blogged about last week), I feel optimistic about salpingectomy studies moving forward and proud of FORCE’s hard work and contributions in promoting these studies. The voice of the hereditary breast and ovarian cancer community has been heard. Our community is highly motivated to participate in hereditary cancer research and once the study is developed and open, I feel confident that women will enroll. Please stay tuned for further updates. To read more about fallopian tube and salpingectomy research, read our Research Updates article and view our on-demand webinar on this topic.

13 Developments That Have Helped the HBOC Community

September marks Ovarian Cancer Awareness Month. And September 23-30 we will celebrate National Hereditary Breast and Ovarian Cancer Week! Follow us on twitter, Facebook, and our website to see what we are doing to celebrate and to share your celebration ideas with us!

In honor of this time of year and in keeping with our “13 Things” theme, it seemed appropriate to share my list of 13 developments that have helped our community. Feel free to share your own additions to our list.

1) Discovery of BRCA1 and BRCA2 and advances in gene sequencing
Long before the discovery of the BRCA genes, scientists knew there was a link between breast and ovarian cancer. Geneticist Mary-Claire King first identified the existence of the so-called “breast cancer” genes. Scientists isolated the BRCA1 gene in 1994 and the BRCA2 gene in 1995, leading to the development of a blood test to screen for mutations in these genes. In the past, women with a strong family history of breast and/or ovarian cancer had no way to determine whether or not they had inherited the predisposition to cancer that ran in their family. With genetic counseling and BRCA testing, women can learn more about their risk for breast and ovarian cancers and make more informed health care decisions.Further progress in research and clinical genetics has allowed us to better quantify people’s risk for cancer. BRCA testing has improved and more mutations can be detected in these genes than previously.

Other genes have been identified that can also increase the risk for breast and ovarian cancers, although most increase the risk to a lesser degree than BRCA. Ambry Genetics and University of Washington are examples of laboratories offering genetic panels for people who have breast and ovarian cancers but have no known BRCA mutation in the family. Other tests are in development.

2) FORCE founded as a resource to educate, support, and unite the hereditary cancer community
In 1999, Facing Our Risk of Cancer Empowered (FORCE) was established as a devoted resource for the hereditary cancer community. Our founding principle was that no one should face hereditary cancer alone. Our mission has remained constant: to improve the lives of people and families affected by Hereditary Breast and Ovarian Cancer (HBOC) Syndrome. Our programs provide support, education, awareness, research, and advocacy. In the 14½ years since our inception, FORCE has provided compassionate support and evidence-based information to thousands of hereditary cancer survivors and previvors through our many programs.

3) Genetic Information Nondiscrimination Act (GINA)
Prior to 2008, widespread fear of genetic discrimination kept many people from taking advantage of genetic tests that could make a significant difference in their health care decisions and outcomes. This fear also prevented many people from becoming involved in medical research. The Genetic Information Nondiscrimination Act (GINA) became law in 2008. GINA prohibits health insurance and employment discrimination on the basis of genetic information or a genetic test result. FORCE and researchers from The Ohio State University recently published findings from a survey of consumer knowledge and attitudes about GINA. The study indicated that many people who undergo genetic testing are unaware of GINA.

4) Targeted cancer therapy
Targeted cancer therapies treat disease by interfering with molecules involved in tumor growth and progression (called molecular targets). By focusing on molecular and cellular changes found in cancer cells, targeted cancer therapies may be more effective than other types of treatment and cause fewer side effects. Because these therapies may benefit only a subset of cancer patients, they are usually accompanied by tests to determine whether a person’s cancer cells express the appropriate target.

One of the first molecular targets identified for cancer therapy was the estrogen receptor (ER) expressed in many breast cancer tumors. The FDA has approved several drugs for the treatment of ER-positive breast cancer, including tamoxifen, a selective estrogen receptor modulator, and aromatase inhibitors including anastrazole, letrozole, and exemestane.

PARP inhibitors block an enzyme used by cells to repair damaged DNA. Research is ongoing to determine if PARP inhibitors may work against cancers in people with BRCA mutations, since their tumor cells already have problems repairing DNA. The medications are being tested in clinical trials, and are not yet FDA-approved for use outside of clinical research.Learning more about the molecular defects of specific tumors should help to clarify the role of therapies targeting these defects. More research is needed to determine which targeted therapies work best for which tumors.

5) Oncotype DX, Mammaprint and other treatment decision tests
Not too many years ago, all women diagnosed with invasive breast cancer received the same chemotherapy. Although it effectively treats cancer, chemotherapy has serious side effects, and not all treatments are equally effective for all people. With the development of OncotypeDX, Mammaprint, and similar treatment decision tests, oncologists can use molecular techniques that examine the biology of the tumor, help predict which tumors have the highest likelihood of recurring and which patients would benefit most or least from chemotherapy.  With Oncotype DX, studies have shown that for patients with lymph node-negative, ER-positive breast cancer, a low recurrence score argues against the use of chemotherapy and a high recurrence score argues strongly in favor of the need for chemotherapy. Before these tests were available, doctors knew that not all patients benefit from chemotherapy, but they had difficulty determining which patients needed more aggressive treatment. Using these tests oncologists can help spare women whose chance of recurrence is very low from aggressive chemotherapy.

6) Discovery of fallopian tube origins of many hereditary gynecologic cancers
Gynecologic oncologists had long believed that most ovarian cancers start in the ovarian epithelium, the cells lining the surface of the ovary. However, emerging research suggests that many so-called “ovarian” cancers in BRCA mutation carriers begin in the fimbria (the area closest to the ovary) of the fallopian tubes (the passage that connects the ovaries to the uterus). Since this theory was first proposed, several studies have supported this observation. Recognition of fallopian tubes as the site of many BRCA-associated ovarian cancers has led pathologists to pay more attention to the fallopian tubes removed during prophylactic surgery; catching some “occult” or hidden cancers that would have been otherwise missed. This has also led to the discovery of Tubal Intraepithelial Carcinoma (TIC), precancerous changes in the tubes. Further research is continuing to determine if we can develop better detection and prevention methods, including whether removal of the fallopian tubes might lower the risk for gynecologic cancers in mutation carriers who are not ready to prophylactically remove their ovaries. Removing the fallopian tubes alone is not currently an approved risk-reduction strategy.

7) Serial sectioning of ovaries and fallopian tubes
As more doctors began recommending prophylactic bilateral salpingo- oophorectomy (BSO) to prevent ovarian cancer in high-risk women, pathologists began to discover small, unsuspected, “hidden” cancers had often developed in the ovaries and tubes of women by the time they had surgery. Although tiny, some of these cancers were still aggressive and further surgery or treatment was recommended. If not discovered and therefore left untreated, these cancers could recur later. Researchers at University of California at San Francisco published their findings on a pathology protocol designed to find these hidden cancers by looking at many ultra-thin cross sections of the removed tissue. Previously, pathology procedures called for examination of only a few representative samples. Since this extensive “serial sectioning” became standard-of-care protocol for high-risk women who undergo bilateral salpingo-oophorectomy (BSO), more women are being diagnosed at early stages of fallopian or ovarian cancer, before the disease has spread and while it’s still curable.

8) Laparoscopic and minimally invasive BSO
In the past, removal of the ovaries and tubes was always performed through a large abdominal incision that allowed the surgeon to view the organs being removed. The invention of the laparoscope–a tiny camera on the end of a surgical tool that can be inserted through a small abdominal incision—allowed gynecologic surgeons to achieve a similar outcome with a smaller incision, less pain, and quicker healing. Generally, women who have prophylactic laparoscopic BSO can go home the same day. Abdominal surgery requires several days of hospitalization.

Although on occasion laparoscopic procedures are converted to full abdominal surgeries if there is a complication or excessive bleeding, or if the surgeon needs to see more of the abdominal cavity, for the most part, minimally invasive laparoscopic surgery is standard-of-care for prophylactic BSO. The development of robotic equipment has further improved a surgeon’s visibility of and access to abdominal organs, especially during more complicated surgeries to remove large or invasive tumors.In some cases gynecologic surgeons recommend hysterectomy (removal of the uterus) as well as BSO. This additional surgery can often be performed vaginally through another small incision at the time of the BSO.

9) Screening breast MRI
Women with BRCA mutations have a lifetime breast cancer risk as high as 85%. Their risk begins at a younger age than for sporadic breast cancer, when breast tissue is very dense and harder to image by mammography. In the past decade, researchers began studying whether magnetic resonance imaging (MRI) could be a more sensitive screening tool for breast cancer in high-risk women. Since 2004 several papers have consistently reported that breast MRI screenings of women with BRCA mutations find more early-stage cancers. Earlier detection increases the chance of successful treatment and long-term survival: this has also been shown in these studies. Annual MRI in now standard-of-care for breast cancer screening in women who are high-risk due to a mutation or a strong family history of cancer.

10) Mastectomy advances
Radical mastectomies were performed as standard treatment up until the 1970s. This disfiguring surgery removed all of the breast tissue, lymph nodes under the arm on the affected side, the muscle underneath the breast, and the nipple and areola, leaving only enough skin to close the incision. Lymphedema and long-term pain were common after radical mastectomies. Over the years, this procedure was replaced by less extensive and less invasive surgeries that do not compromise survival. Development of modified radical mastectomies, skin-sparing mastectomies, and nipple-sparing mastectomies has led to fewer complications, fewer long-term side effects, more aesthetic outcomes, and in some cases, retention of some sensation in the breast.

11) Sentinel lymph node biopsy
Sampling underarm lymph nodes of breast cancer patients allows doctors to determine if invasive disease has spread beyond the breast, and affects prognosis and treatment recommendations. Prior to sentinel node biopsies, women who were diagnosed with breast cancer faced axillary dissection—removal of multiple lymph nodes—to stage their cancer. Axillary dissection, however, increases the risk for lymphedema, painful and dangerous swelling of the arm. Sentinel lymph node biopsy (SLNB) allows surgeons to sample only one or a few lymph nodes that are most likely to contain any cancers cells that have spread beyond the breast. If the “sentinel” lymph node or nodes are free of cancer, most patients do not have additional nodes removed. Removal of fewer lymph nodes lowers the risk for lymphedema and improves quality of life in breast cancer survivors. A large study of 5,600 women published in 2010 confirmed the value of SLNB. It showed no difference in disease-free- or overall-survival between women who had negative sentinel nodes and received full axillary dissection compared to those who received sentinel biopsy alone.

12) Reconstruction advances
Reconstruction has evolved over the years, delivering more options for rebuilding natural-looking breasts after mastectomy with less extensive surgery. Doctors can move fat from the belly, thighs, or hips to reconstruct breasts. In the past, these tissue transfers required extensive loss of muscle. With the development of perforator flaps, the same outcomes are achieved while sparing muscles. Fat transfer can augment or rebuild breasts using liposuction and fat injection procedures.New silicone implants are softer and are believed to last longer than older implants. They may also be less likely to rupture, leak, and deflate. A new type of expander being studied allows women to control their own expansion process. Direct-to-implant surgery offers patients the opportunity to forgo expansion, reducing the overall reconstruction timeline with less discomfort.

13) Survival data on prophylactic oophorectomy
Women with BRCA mutations have a lifetime risk for ovarian cancer that is many times higher than women in the general population. Since the discovery of the BRCA genes, many research studies have documented the effectiveness of prophylactic mastectomy and oophorectomy for lowering risk in high-risk women. But until 2010 there was little published research to show that these surgeries improved survival for women with BRCA mutations. In 2010, researchers from the University of Pennsylvania published their research on behalf of a large international collaboration, following over 2000 women with BRCA mutations of whom about half chose to undergo one or more risk-reducing surgeries. The compelling results showed that risk-reducing surgeries significantly reduced cancer diagnoses, and that risk-reducing removal of ovaries lowered cancer-related and overall deaths.

13 Things That Jewish People Should Know About Hereditary Breast and Ovarian Cancer

Before I was diagnosed with breast cancer at age 33, cancer was not on my radar. Despite the fact that my paternal grandmother had died young of so-called “abdominal cancer,” none of my health care providers indicated that I might be at high risk for cancer. My health care team treated my diagnosis of young-onset breast cancer like a lightning bolt out of the sky. It wasn’t until after my initial treatment (a unilateral mastectomy) that I read a magazine article and learned of several significant red flags for an inherited BRCA mutation. After reading the article I became concerned that my cancer might be hereditary. The article talked about the link between young-onset breast cancer (like mine!) and ovarian cancer (which my grandmother likely had) and BRCA mutations. It also mentioned the relevance of a family’s health history on the paternal side (in my case the only cancer in my family was on my father’s side). No doctor had ever expressed interest in the cancer on my father’s side of the family. Perhaps the detail that was most surprising to me was the high prevalence of BRCA mutations in people of Easter European Jewish descent. All of the factors mentioned in the article which raised the suspicion of a mutation applied to my situation. Had I known this information before my mastectomy, I would have pursued genetic counseling and testing and made different surgical decisions at the time of my diagnosis.

Even now, 16 years after my diagnosis, as I give presentations on hereditary cancer, I still frequently meet Jewish people who have no idea of the high prevalence of BRCA mutations in this community. Most Jewish people are aware of the dangers of Tay-Sachs disease, another genetic disorder which is also prevalent in Jewish populations. Yet there are still many people who are Jewish and have a family history of cancer who have never heard of BRCA mutations and are unaware of the availability of genetic counseling and testing. Learning about BRCA   almost a year after my initial diagnosis of breast cancer was eye-opening. I learned the importance of people doing their own researching and advocating when it comes to health care decisions.

In keeping with our “13 Things” theme during 2012, I present my list of what Jewish people should know about hereditary breast and ovarian cancer, with the hope that this list will be spread far and wide beyond the FORCE community in order to save lives.

1. BRCA mutations have been found in people of every ethnicity. But people of Eastern European Jewish ancestry have the highest known incidence of BRCA mutations, and hereditary breast and ovarian cancer.
2. About 1 in 40 people of Jewish decent have a BRCA mutation, about 10-fold higher than other populations.
3. Women with a BRCA mutation have up to an 85% lifetime risk for breast cancer and a 50% lifetime risk for ovarian cancer.
4. About 40% of Jewish women with ovarian/fallopian tube cancer and 20% who have premenopausal breast cancer have a BRCA mutation.
5. BRCA mutations are associated with increased risk for several types of cancer, including breast (both male and female), ovarian, fallopian tube, primary peritoneal, pancreatic, melanoma, and prostate .
6. Each child of an affected parent has a 50% chance of inheriting a BRCA mutation.
7. BRCA mutations can be passed down equally from fathers or mothers to sons or daughters.
8. Beginning at age 40, men with BRCA mutations should discuss with their doctor the benefits, limitations and risks of prostate screening. Preliminary research suggests that prostate cancer in men with a BRCA mutation may be more aggressive than prostate cancer in men who do not have a BRCA mutation. Men with BRCA mutations are at risk for melanoma, male breast and pancreatic cancer as well.
9. People who test positive for a BRCA mutation have options to lower their risk for cancer or detect it at an earlier, more treatable stage.
10. The majority of BRCA mutations in Jewish people occur in one of three genetic sites. Genetic testing usually begins with a Multisite 3 panel that looks for these common mutations and is less expensive than full BRCA testing.
11. In couples where both individuals have a BRCA2 mutation, it is possible for children to inherit a rare and deadly disease known as Fanconi Anemia, which is more common in people of Jewish descent. Couples concerned about this possibility should consult with a genetics expert.
12. Genetic testing for BRCA is performed from a blood sample or cheek swab.  The test itself is simple, but it is not always straightforward. Consulting with a genetic counselor is the best way to assure the correct test is ordered, results are properly interpreted and an appropriate course of action is discussed.
13. The majority of people who have a BRCA mutation or a family history of cancer are unaware of their increased risk for hereditary cancer.  Awareness is critical to saving lives.

Visit our website for more information about genetic counseling and testing. Visit our FORCE in the Jewish Community page to watch our video and learn about ways you can help raise awareness about BRCA in Jewish people.

A Public Response to Dr. Ivan Oransky

To put this post in context, I was forwarded the link to this webcast from the recent TedMed Conference. I suggest watching this presentation by Dr. Ivan Oransky prior to reading the following blog.

Dear Dr. Oransky,

I recently watched your TedMed presentation and I share your concerns about medical overtreatment of certain conditions and the importance of weighing risk and harm when considering medical interventions. I agree with your point that not all medical tests and interventions have clinical value. I also agree that all stakeholders should share the responsibility for appropriately applying medical technology based on evidence and outcomes. However, I disagree with some of your statements, and I feel compelled to correct what I believe is a misunderstanding on your part about the term “previvor,” and the intent of the advocacy group FORCE in coining and using the term.

In my opinion, your assertion that advocacy groups use “previvor” to make more people feel they are at risk and raise more funds is incorrect. I founded FORCE in 1999, not to make money, but to ensure that people have access to credible information about hereditary cancer, that hereditary cancer research continues to provide better options, and that no one must face it alone. FORCE does not inflate people’s risk. We refer people to genetics experts based on professional consensus guidelines published by the National Comprehensive Cancer Network (NCCN).

Further, previvor is a term developed for a group of people who carry a mutation that confers a high cancer risk in their lifetime. FORCE is a national non-profit organization with a mission to serve individuals and families with a BRCA gene mutation or hereditary cancer. We coined the term to refer to individuals who are genetically predisposed to cancer but have not been diagnosed. The term was a response to a plea by one of our members who lost her mother to cancer at a young age. Learning that she had inherited a BRCA1 mutation and potentially faced the same fate, she sacrificed her own breasts, ovaries, and fertility to reduce her very high risk. Yet she felt dismissed and marginalized by people who did not understand her situation.  She articulated what many in our community felt: they needed and wanted a way to collectively organize, support each other, and advocate for resources to address their unmet needs.

My own breast cancer was diagnosed at age 33 and recurred the year following my initial treatment. I endured chemotherapy, radiation, and an increased likelihood of an early death from cancer. My son was only two years old at the time. I was forced to take a leave of absence from my work during treatment and went into medical debt to pay hospital and treatment costs. Had I known of my inherited predisposition at the time I would have taken steps to avoid cancer or detect it earlier. My experience is just one illustration of the financial, emotional, and physical costs of not knowing about a genetic predisposition to disease. These burdens impact entire families and can affect long-term quality of life. Many women pay with their lives.

Too many hereditary cancer families have watched their loved ones battle and too often lose their lives to the disease. They want to know what they can do to avoid the same fate for themselves and their own children. They face lifetime risks for cancer as high as 90%. Their risk-management options—preemptive surgery, risk-reducing medications, and heightened surveillance—are not without side effects or other risks. complex information about risk and risk-management and using it to make informed decisions. Although risk-management options are not ideal, most genetics professionals concur that hereditary cancer risk assessment and associated interventions have clinical utility. Research from peer-reviewed journals demonstrates that risk-management options can lower cancer-associated and overall mortality in the highest-risk cohort.

As an organization whose mission includes education, FORCE understands the challenges of presenting complex information in a balanced, understandable, compelling, and humane fashion. We take this responsibility seriously and we frequently consult with our expert advisory board for guidance. It is my opinion that your representation of previvors and our advocacy for the community was neither balanced nor accurate. Your baseball analogy illustrated your point about overtreatment of pre-conditions, but you neglected to mention inherited cancer risk, the situation for which the term was established. You cited “pre-acne” as an example of the absurdity of treating a precondition, even though the consequences of a diagnosis of acne and a diagnosis of cancer are not remotely the same. Women with BRCA mutations have elevated lifetime risk of developing breast and ovarian cancer that is many times higher than the general population. They are more likely to develop aggressive cancers and at a younger age when they are less likely to be screened. Thousands of women die from these cancers annually. Given these facts, the example of pre-acne is not a realistic comparison to inherited cancer risk and in my opinion insults a group of people with a very serious set of medical concerns.

Members of our community have an inherited mutation that leads to changes on a cellular level, which put them at very high risk for disease. Although our genetic differences may not be obvious on the surface they cause challenges that separate us from other people who do not possess these mutations. Ignorance and ridicule directed at people with medical challenges of any type are inappropriate.

I hope that you will provide a clarification of your statements about the meaning of the word previvor to include the fact that it was coined to describe and empower a specific group of people at very high risk for a deadly disease like cancer. Further, I encourage you to use your role as an experienced medical journalist and professor to delve more deeply into the difficult issues of people with BRCA mutations. In doing so you have the potential to make a positive impact on a lot of people.

I am not a baseball player, Mr. Oransky, but I do play tennis. In tennis when you do not swing at the ball, you lose the point. People with a BRCA or other inherited cancer-predisposing mutation face extraordinary risk for a disease that is too often fatal. Many of us have lost so much to cancer. Not swinging at a disease that has a high likelihood of coming our way is not a wise option.

13 Facts that Men with Hereditary Cancer Risk Should Know

As we approach Father’s Day we would like to call attention to an often forgotten group: men who have a BRCA mutation or a family history of hereditary cancer. Although men don’t get ovarian cancer and their risk for breast cancer is very low, we are learning more and more about how hereditary cancer risk affects them.

FORCE responded to the United States Preventive Services Task Force’s (USPSTF) preliminary guidelines that recommended against prostate cancer screening for all men. Based on emerging research, we encouraged the panel to revise the text to state that the guidelines did not apply to men with BRCA mutations. The USPSTF incorporated our suggestion into its final guidelines. Accomplishments like these remind us how important FORCE’s advocacy work is. Men with BRCA mutations are important cancer stakeholders. Our goal is to assure that they have a voice advocating for their concerns when government cancer policies are developed.

In keeping with our 13 Things theme and in honor of high-risk men, here are 13 facts men need to know about hereditary breast and ovarian cancer.

1. Men with BRCA mutations have increased risk for breast and prostate cancer, and like women with mutations, their risk for pancreatic cancer and melanoma is also elevated. Men with BRCA2 mutations have greater risk than men with BRCA1 mutations.
2. Although men with BRCA mutations have a greater cancer risk than men in the general population, their risk for cancer is lower than most women with a mutation.
3. Because preliminary research suggests that hereditary prostate cancer tends to be a more aggressive form of the disease, the USPSTF advises that screening guidelines developed for men in the general population should not be applied to men with mutations.
4. BRCA mutations have been found in people of every ethnicity, but not with the same frequency. About 1 in every 300 to 500 people carry a BRCA mutation. About 1 in 40 people of Ashkenazi Jewish descent have a mutation.
5. Breast screening recommendations for men with a mutation include regular breast self exams and twice yearly clinical exams by a medical professional beginning at age 35. A baseline mammogram is recommended at age 40 and annual mammograms thereafter are advised, depending on the baseline results.
6. Men with mutations or hereditary cancer in the family should discuss with their doctor the benefits, limitations, and risks of prostate screening using PSA and digital-rectal exam beginning at age 40.
7. The international IMPACT study is looking at the benefit of PSA screening in men with and without BRCA mutations. Full results from this research will be available in 2020.
8. BRCA mutations can be passed down equally from either parent to sons or daughters.
9. When both parents have a BRCA2 mutation, their children may inherit a rare and deadly disease known as Fanconi Anemia. This is more common in people of Jewish descent. Couples concerned about this possibility should consult with a genetics expert.
10. Couples who are concerned about passing a mutation to their children may want to speak with a fertility expert about in vitro fertilization and preimplantation genetic diagnosis that screens embryos for BRCA mutations.
11. Early research on PARP inhibitors for treatment of prostate cancer has been promising. Currently, some open PARP inhibitor studies are enrolling men with advanced prostate cancer.
12. Coverage for BRCA testing in men can vary depending on their insurance plan. A genetic counselor can help men determine if their insurance will cover testing.
13. Men who are concerned that the cancer in their family may be hereditary should consult with a genetics expert before pursuing genetic testing. FORCE can provide information on locating genetics specialists. Genetics consultations are typically covered by insurance.

If you are a man with a BRCA mutation or hereditary cancer in your family, please complete our survey for high-risk men, read about our advocacy efforts on behalf of the men in our community, visit our expert-reviewed information section for men, and join our mailing list to stay updated on new information, research, and programs specific to men with BRCA mutations. Please consider participating in this telephone focus group research study for high risk men.

FORCE helped unite and organize the female hereditary cancer previvor and survivor populations to advocate for more resources; we need to do the same for the men in our community. If you have high-risk men in your life, please let them know about these resources. Please help us raise awareness, spread the word, and save lives by sharing this blog, and printing and sharing our “13 Things Men Need to Know” flier.

13 Reasons to Attend the Joining FORCEs Against Hereditary Cancer Conference

Registration is now open for our 7^th annual Joining FORCEs Against Hereditary Cancer conference. The excitement is building as planning progresses for this amazing and unique event. As Course Director, I think the conference is incredible; as a participant, this is the conference that I personally enjoy the most and gain the most from attending. In keeping with our “13 Things” theme for 2012, below are 13 good reasons why you should not miss this year’s event.

 1.  We have something for everyone. Clear explanations about the science of hereditary cancer make research and medical options understandable and accessible to everyone. From explanations about basic science, statistics, and cancer to presentations on new research discoveries, the conference offers a range of information that is relevant to people with and without advanced science training.

2.  The largest annual gathering by and for the hereditary cancer community. Be a part of this landmark event.

3.  Our conference is organized to help you find the information you need the most. Conference content is aligned into tracks with sessions that are focused on all aspects of hereditary cancer.  You will find informative and inspiring sessions whether you are a survivor or previvor, you are newly diagnosed or years out from treatment or preventive surgeries. Detailed and specific information will address:

• newly diagnosed breast and ovarian cancer survivors
• long-term cancer survivors
• people still in treatment for cancer
• people who just learned they carry a mutation
• previvors
• spouses, partners, and caregivers
• people considering whether or not to have genetic testing
• men with mutations
• patient advocates
• genetic counselors
• people interested in surveillance for breast, ovarian, and pancreatic cancer
• women who are considering prophylactic mastectomy (with or without reconstruction)
• women who are considering prophylactic oophorectomy
• women who have had prophylactic surgery
• women who have undergone early menopause

4.  Medical and psychosocial resources and support. The information you gain will support decision-making and provide information about your legal rights that will help you navigate the medical and insurance systems.

5.  We bring researchers to you. You will have an opportunity to hear the latest research findings regarding detection, prevention and treatment, presented first-hand by the researchers themselves.

6.  Unprecedented networking opportunities. The conference offers plenty of time and opportunity to network with others based on your personal circumstances and geographic location.

7.  Benefit from the experience of others. Meet, chat, and bond with hundreds of others who share your concerns. Hear the poignant personal stories of people just like you who have faced hereditary cancer. Talk face-to-face with your virtual friends who have supported you on Facebook or the FORCE message boards. Our after-hours events are social gatherings that provide opportunities to share in relaxed and intimate settings.

8.  Information and support to help you make decisions about surgery and reconstruction. If you are considering your surgical options, talk to plastic surgeons and women with every type of reconstruction (and no reconstruction). Attend our “Show and Tell” session.

9.  Support for communicating genetic information to family members. Learn how to discuss sensitive issues with relatives, spouses, and adult and minor children.

10.  Enroll in research. On-site enrollment for studies that will offer better answers for the future allows participants to help make a difference.

11.  Meet one-on-one with the world’s hereditary cancer experts. Where else would you have an opportunity to ask personal questions about hereditary cancer, risk, treatment, surgery, and menopause of world experts?

12.  Bond with family members. Sharing the conference with family members is a unique bonding experience that will help them better understand the issues that you face, their own risk for cancer, and management options.

13.  Enjoy the venue experience. Centrally located in Orlando, our conference hotel offers many indoor and outdoor activities and sports – including lighted tennis courts and three full Jack Nicklaus golf courses – with proximity to all the major theme parks. The conference offers great food, relaxation, opportunities to decompress, express yourself, and play.

Visit our conference website to watch our conference video, download and print our brochure, view our agenda and speaker list, or read our Frequently Asked Questions for more information.