GRANT SUBMISSION Northern Sunrise County Submitted to: Peter Thomas, CAO January 2016
Contents 1. PROJECT OVERVIEW... 1 2. ABOUT THE CAUSE... 1 2.1. What is HBOC syndrome?... 1 2.1. What can be done?... 2 2.2. How common is HBOC syndrome?... 3 3. PROJECT DETAILS... 4 3.1. Background... 4 4. ABOUT THE SOCIETY... 3 5. EXECUTION... 5 6. BENEFIT TO THE DONOR... 5 7. THE FUTURE... 5 8. SUCCESS INDICATORS... 6 9. MORE INFORMATION... 6
1. PROJECT OVERVIEW The HBOC Society is seeking financial support for a national awareness program entitled, "Risky Genes", which is aimed at: finding the many thousands of people that do not yet know they are at high risk for hereditary cancer to provide them with the tools they need to save their lives; providing a framework for existing hereditary breast and ovarian cancer (HBOC) syndrome carriers to become connected; garnering public support for new and existing programs specifically targeted to hereditary breast, ovarian and the other cancers HBOC syndrome carriers are susceptible to; and, ensuring prospective and confirmed HBOC syndrome carriers have adequate insurance coverage and financial management practices in place. The total cost of a national awareness program as described above is not possible to calculate at this time because the issue of hereditary cancer and the many steps required to be taken to achieve the above goals are multi-faceted and far-reaching. The HBOC Society is operating in steps, as funds become available for this purpose. The grant funding amount at the discretion of the donor. 2. ABOUT THE CAUSE 2.1. What is HBOC syndrome? HBOC syndrome is a proven inherited genetic mutation that greatly reduces one s ability to ward off or fight breast, ovarian and prostate cancer OR where there is a very strong family history of these cancers potentially due to a genetic mutation that has not been discovered yet. HBOC syndrome is used synonymously with hereditary, high risk or 'risky genes' when referring to this condition. It is well proven that the HBOC syndrome carrier population face cancer risks that are exponentially higher than in the general population. Not only is cancer is diagnosed much more often, but at a younger age and it tends to be more aggressive, which makes it harder to treat. Both men and women can carry and pass down HBOC syndrome to their children, who have a 50% chance of also being a carrier.
Hereditary breast cancer was first discovered in 1995 when the BRCA (breast cancer) 1 and BRCA2 genes were identified. Since the HBOC Society was formed in 2002, research has proven that mutated BRCA genes also cause a high rate of ovarian and prostate cancer, and some other cancers at lower rates. As well, many additional genes have been and will continue to be discovered that also fall under the HBOC syndrome umbrella. However, because the science is so new, only BRCA genes are the subject of most available research to date. Hereditary cancer is diagnosed at a much higher rate, younger age and tends to be more aggressive than spontaneous cancer When cancer is diagnosed in an HBOC syndrome carrier it is more likely to happen at a younger age when a person is still single or dealing with a young family, well before most people have thoughts of life insurance or financial planning, adding the stress of extreme financial difficulty at a time when least able to cope. This adds to the urgency of providing knowledge and support to those affected. Due to the nature of HBOC syndrome, many affected families have experienced illness and/or loss of multiple loved ones, including a disproportionate amount of young mothers. This leaves remaining children and blood relatives not only deeply traumatized, but intensely afraid for themselves. 2.1. What can be done? For those aware of their genetic status, there are options in place to avoid a cancer diagnosis or to find cancer early, when it's most treatable: increased screening for breast and ovarian cancer from age 25 increased screening for prostate cancer from age 40 chemoprevention drugs preventative surgeries: o double-mastectomy with or without reconstruction, and/or; o salpingo-oopherectomy (ovary and fallopian tube removal), sometimes in conjunction with hysterectomy and removal of top of cervix. Although drastic, the current preventative recommendations have been proven to reduce risk up to 95%, which takes carriers below general population risk. 2
Preventative surgeries are often recommended at an early age, between the ages of 25 to 40. All current prevention options result in additional issues, including but not limited to: relational, fertility and body-image difficulties, and; sexual dysfunction and other menopausal symptoms (known to be more intense when menopause is surgically induced) that require additional support, education and services. To date, hereditary prostate cancer remains virtually unknown. There are no prevention options in place, but early screening recommendations are in place. 2.2. How common is HBOC syndrome? An estimated 5-10% of all breast cancer and 10-15% of all ovarian cancer is estimated to be hereditary. Males are also susceptible to hereditary breast cancer, but at a lower rate than females. At least 5-10% of all prostate cancer is estimated to be hereditary. These percentages, widely accepted by the larger cancer organizations and the medical community, translate to 250,000 to 450,000 Canadian HBOC syndrome carriers that have been or will be diagnosed with, breast, ovarian or prostate cancer. This does not include any of the other cancers that carriers are susceptible to, nor does it include the percentage of carriers that won t develop cancer, which drives the actual number of carriers higher. HBOC syndrome affects 3-5 times more Canadians than multiple sclerosis HBOC syndrome is far more common that most people realize. Unfortunately, the media, larger cancer organizations and even some medical professionals downplay the incidence, as was often the case regarding actress Angelina Jolie Pitt s BRCA1 status. This has created widespread misperception that HBOC syndrome is only a small problem, which has detrimentally affected the ability to garner financial support for this cause. The Canadian HBOC syndrome population is estimated between 280,000 to 500,000. 3. ABOUT THE SOCIETY Mission: To represent, educate and support individuals, families and communities affected by HBOC syndrome Our Vision: We believe that those individuals and families impacted by the HBOC syndrome should have timely access to quality health information and services. We believe and respect that each individual has the right to choose their own path to well-being We believe in the value of support while respecting the privacy of individuals and their families affected by the HBOC syndrome. Other organizations deal only with a part of the picture, i.e. just breast cancer, and often focus very little on their hereditary component. There are no other organizations in Canada that attempt to deal with all aspects of what it means to be an HBOC syndrome carrier. Those involved with the Society have lost grandparents, mothers, fathers, sisters, brothers, aunts, uncles, nephews, nieces, cousins and even our own children. Research has shown the subsequent generations are being diagnosed with cancer at an earlier age. We have no time to lose. The HBOC Society is very different from other cancer organizations. Because our target group has the ability to avoid a cancer diagnosis, our efforts are primarily about prevention. Other organizations are focused on afterdiagnosis. The Society and the cause need champions Because the Society is primarily about prevention, the types of companies that are normally targeted for funding by a cancer-related organization have nothing to gain, so are not interested, an obvious example being 3
pharmaceuticals. In addition, the larger cancer organizations themselves purport to want to eradicate cancer, but despite having at their fingertips a group in which that goal could be realized, they are not focused on their hereditary component because it represents a relatively small portion, preferring instead to direct funds towards services and research for the larger, spontaneous cancer, group. This leaves the cause and the Society in a very difficult situation. 4. PROJECT DETAILS 4.1. Background Awareness is so low that an estimated 80% of HBOC syndrome carriers are still not yet aware of their genetic status, so can do nothing to protect themselves Actress Angelina Jolie-Pitt's reveal regarding her genetic status and preventative surgeries did increase public awareness of hereditary breast and ovarian cancer somewhat, but research has shown education is still sorely lacking. Most of the HBOC carrier population still remain unaware of their genetic status, so unable to do anything to save their lives. Lack of awareness has caused an extreme funding shortfall Public knowledge and opinion drives funding decisions. Without pressure from the HBOC syndrome carrier population and their supporters, funding for the hereditary component of breast, ovarian and prostate cancer out of the larger cancer organizations has been minimal, if not entirely absent. As a result, services, resources and research are limited and fragmented. In turn, the marked lack of research has meant no targeted therapies for the carrier population's aggressive cancers and no research efforts at the genetic level to prevent cancer in the first place. Lack of awareness has also affected priorities within the health care system. Wait times for genetic testing are very long, up to two years in some regions, and the wait to obtain breast reconstruction surgery has been recently reported as high as several years. Popular opinion is still largely unsupportive of the drastic measures HBOC carriers need to take to save their lives Public lack of information and/or misinformation affects popular opinion and the people that surround HBOC syndrome carriers. Without the knowledge of where to turn for help and connection after being confirmed as an HBOC syndrome carrier, young carriers are often forced to make extreme life-changing decisions on their own, sometimes even without the support of their own loved ones. The weight of disapproval regarding prevention options may be too overwhelming and may have a detrimental effect on a carrier's decision-making, especially when facing such drastic, life-changing prevention options. Hereditary cancer can be beaten HBOC syndrome carriers are the only population that have the opportunity to actually get ahead of a cancer diagnosis. 4
5. EXECUTION The level of overall funding obtained will determine the ultimate scope of the project. The HBOC Society has laid the ground work for the Risky Genes Awareness Program. To date the following steps have been achieved: Branding Foundational messaging Informational website (www.riskygenes.org) Official program launch at the HBOC Society annual OUR GENES conference, September 2016 Local news coverage Targeted social media Next steps and estimated costs: Develop a provincial/national media strategy ($2,500 - $5,000) Assemble visual (commercials) and print media ($5,000 - $25,000) Delivery: o Social media ($1,000 - $,5000) o Newspapers, magazines ($10,000 - $50,000) o TV / radio (up to $100,000) 6. BENEFIT TO THE DONOR The Risky Genes Awareness Program would save countless lives, so be of remarkable benefit to the HBOC syndrome population, as outlined in this submission. Benefits to the Donor include (dependent on funding level, negotiable): Website recognition Social media recognition Promotional material recognition Other media recognition The knowledge that you are making a marked difference for a cause that affects up to 1/2 million Canadians and their loved ones Other benefits to be negotiated 7. THE FUTURE Assuming funding success, HBOC syndrome carriers would receive the opportunity to live long and full lives. Increased public awareness would put pressure on government and other cancer organizations to fund their hereditary component at a proportionate level, which in turn would result in increased research, providing hope for future generations. 5
The HBOC Society would continue to benefit through increased volunteerism and financial support, allowing expansion of their programs and services. 8. SUCCESS INDICATORS Primary success indicators are measurable through in-house and public-access records: Media uptake Increased genetic testing uptake Increased high risk clinic visit uptake Increased preventative measure uptake. Increased HBOC Society contacts Increased volunteerism and financial support for the Society and the cause Increased funds coming out of the larger cancer organizations for their hereditary component Decreased hereditary breast, ovarian and prostate cancer diagnoses and deaths Secondary indicators, although less tangibly measured, will be obvious to the carrier population: Increased public support for the HBOC syndrome carrier's plight and choices. Increased knowledge and emotional support from within the medical community. Increased emotional support from within carrier peer groups and families. 9. MORE INFORMATION Mary McDonald, Chief Executive Officer E. mmcdonald@hbocsociety.org P. 780-488-4262 C. 780-991-7663 6
#114, 11728 Kingsway Ave. Edmonton, Alberta T5G 0X5 Ph: 780-488-4262 Toll Free: 1-866-786-HBOC (4262) email: info@hbocsociety.org Charitable Registration # 85601 9336 RR0001 www.hbocsociety.org www.riskygenes.org