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WeCancer. A platform for cancer patients and survivors to interact with the broader cancer community and change the future of how we identify late effects of cancer and its treatment. Disclosures.
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WeCancer A platform for cancer patients and survivors to interact with the broader cancer community and change the future of how we identify late effects of cancer and its treatment
Disclosures • This document and the presentation of which it forms part (together the “Materials”) have been prepared by Cassandra Kramer and are confidential furnished to you as information to provide a basis for potential investors to consider whether to pursue an investment in WeCancer and do not constitute, or form any part of, an offer or invitation to purchase WeCancer. It is intended only for the person to whom it has been provided and under no circumstances may a copy be shown, copied, transmitted, or otherwise given to any person other than the authorized recipient. • The information herein is furnished as of the date shown or cited, and WeCancer does not undertake any responsibility for updating the materials contained herein. • The information contained herein is provided for information purposes only, is not complete, and does not oontain all material information about the Company, including important disclosures and risk factors associated with an investment in WeCancer, and is subject to change without notice. • The information herein is not intended to provide and should not be relied upon for, accounting and legal or tax advice or investment recommendation. You should consult your tax, legal, and accounting or other advisors abut the matters discussed herein. • This document contains information about WeCancer’s intended business plans, operating guidelines and strategy. Material economic conditions, market forces, and other factors may cause the Company to adjust its intended business plans, operating guidelines, and strategy • The information included in this presentation should be considered only in conjunction with the verbal presentation that accompanies it and is not intended to be viewed independently of such verbal presentation. Any review of this presentation without the context of the accompanying verbal presentation should not be relied on as a complete description of the information presented herein. No recipient of the written presentation, or any other attendee, shall be permitted to record the presentation in any manner, and by attending this presentation, you agree that you will not produce such a recording. • An investment in WeCancer may not be suitable for all investors. This presentation does not take into account the particular investment objective, restrictions, financial or tax situation of any specific person
Executive Summary • WeCancer is a social network and database created for cancer patients and survivors to inspire others, spread awareness about late effects of cancer and its treatment, and have an outlet for their cancer experiences both before and after active treatment. • In addition, WeCancer provides a means of interacting with and sharing experiences with a larger and more readily accessible cancer community than what is currently available. • What is most unique about WeCancer is that it is a platform for cancer patients and survivors to not only interact with the entire cancer community but to change the future of how we identify late effects through user input combined with medical records. • WeCancer will target the longterm cancer survivor population between 8 and 65 years of age (approximately 4.8 Million as of 2012(1)(2)) in addition to the patients currently undergoing treatment (Approximately 1.5 Million yearly(2010)(3))
Opportunity • Leader with personal experience and understanding of the post-cancer-treatment social arena and challenges found therein • There is a very sizeable gap in cancer “treatment” after active treatment • There is a target population of 4.8 Million survivors (estimate of longterm survivors under 65 as of 2012(1) that is waiting for the opportunity to interact and share their experiences in one place. This number will increase by approximately 200,000 people per year • Gateway Opportunity • Gathering treatment record data in one unified format and in one place provides not only an opportunity to help the cancer community, but also an opportunity to potentially sell that de-identified data and advertising space to multiple stakeholders (attorneys, pharmaceutical companies, hospitals, existing cancer foundations (LAF, LLS, Susan G. Komen), existing survivorship and research centers) • Timely Opportunity • Medical treatment and everything involved with it is increasingly going electronic as it struggles to catch up with the rest of the world • Social networking is becoming increasingly common and more easily understood for users of all ages • Electronic Medical Records (EMRs) make transferring health records much easier than it has ever been
Late Effects Basics • What is a survivor? • A person who is finished with cancer treatment • A Long-Term Survivor is a person who is at least 5 years out of treatment with no recurrence. • 1 out of every 450 adolescents and young adults is a Long-term survivor of childhood cancer (2010). • What are Late Effects? • Range from mild to life-threatening and can affect most organs • Can often be detected early before there are symptoms or problems (saves $) • Many are easily treated • Risk for late effects is determined PRIMARILY by one’s cancer treatment, but can also be a result of one’s cancer itself • Risk often INCREASES WITH TIME AFTER treatment • Late effects are often a result of treatments that can include chemotherapy, radiation, and surgery
What do Late Effects do? • Although data is limited because of the fragmented nature of the studies that are done regarding late effects, we know they can affect: • Growth and development • Fertility and Reproduction • Vital Organ Function • Second Tumors • The most commonly known causes of death as a result of late term effects are Second Cancers, Cardiac effects, and Pulmonary effects.
Patients’ Stories • My story: • I was diagnosed with anaplastic large cell lymphoma (a type of T-cell Non-Hodgkin’s Lymphoma) in 2002. I did a year of chemotherapy and, thankfully, I have been in remission since then. I suffer from many late effects, but one in particular has been particularly frustrating: Celiac Disease. • Celiac disease is defined as a permanent intolerance to gluten that results in damage to the small intestine, causing an inability to absorb nutrients from food. This can ultimately result in lymphoma of the small intestine. It is reversible by completely removing gluten from one’s diet, but trace amounts of gluten are found in many foods, so it’s difficult to completely eliminate. • My gastroenterologist believes that if I had been warned to no eat gluten for at least a year after finishing chemotherapy treatment, I likely would have never developed this disease that now affects my everyday life and is a constant threat of developing cancer again. • If we had a social network and database that allowed for more of a national dialogue among survivors about their respective experiences, we, as survivors, could make an effort to communicate about our health outcomes and help so many future survivors have a better post-treatment experience
Patients’ Stories • Jennie: • A survivor of childhood cancer. She has heart arrhythmias from radiation therapy to her chest. This went undiagnosed for two years as her physicians did not realize this was a potential late effect from radiation. It's now recognized as a late effect in the COG Guidelines, but if there were a database, we would know more about the incidence of it happening after radiation and be able to warn patients of the likelihood of its occurrence.
Existing Survivorship Efforts • NCI, NIH, CDC (components of DHHS) • Curesearch/Children’s Oncology Group (COG) • Childhood Cancer Survivor Study (CCSS) • NAP (National Action Plan for Cancer Survivorship: Advancing Public Health Strategies)
COG/Curesearch Survivorship Guidelines Funded by the NIH, the Children’s Oncology Group (COG) has developed Long-term Follow-up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers. They created a manual for other institutions and practitioners to use in order to create their own LTFU program. The LTFU guideline indicates the strong need for further research and follow-up in their guideline when they write: “Prevention and/or early identification of complications are crucial in order to decrease the long-term health risks associated with curative treatment for childhood cancer. Although many long-term follow-up programs already exist, additional comprehensive, accessible services are neededto accommodate this ever-growing population of young people who are being cured of cancer.
CCSS(Childhood Cancer Survivor Study) • NCI • Collaboration between 27 participating centers in the U.S. and Canada • Cohort of 15,000 Survivors who were diagnosed between 1970 and 1986. (5-year survival minimum) • Due to the significant changes in therapy for children with cancer over the past several decades, currently recruiting for a more contemporary cohort • Comprehensive study with many questionnaires. Also studying siblings and offspring of survivors • Until the expanded cohort has been recruited and followed for five years, however, all of the studies coming out of the CCSS will be based on survivors who were treated before 1986. • Researchers who have studied the CCSS data so far have identified a number of potential late effects, including premature menopause, stroke, and second cancers. • In all, this longitudinal study took approximately 17 years to gather data and publish the results, many of which were outdated by the time they were published. This is TOO LONG!
NAP(National Action Plan for Cancer Survivorship: Advancing Public Health Strategies) • Developed to inform the general public, policy makers, survivors, providers, and others about cancer survivorship and public health • Purpose: “Establish a coordinated national effort for addressing cancer survivorship within the realm of public health” • Partnership between CDC and LAF(Lance Armstrong Foundation) • Objective 3: • “Establish a solid base of applied research and scientific knowledge on the ongoing physical, psychological, social, spiritual, and economic issues facing cancer survivors. Develop an infrastructure for a comprehensive database on cancer survivorship.”
Takeaway from Current Efforts • There are too many separate, fragmented efforts to document survivorship and late effects • Longitudinal studies are not effective or relevant to late effects • Real-Time information is needed • There is a substantial need for faster, more efficient, and more thorough monitoring of Late Effects
A New Approach • Start from the patient population rather than the top-down • Create an national awareness/education campaign • Consolidate information in one location (WeCancer) • Document all correlations • Use algorithms to correlate user input and patient records
Stakeholders • Cancer Patients, Future Cancer Patients, Survivors • Advocates • LAF (Lance Armstrong Foundation, already part of NAP) • Peter Eckart • Leader in Illinois Public Health Institute • Insurance companies (BCBS, Aetna, Humana, CIGNA, etc.) • Medicare, Medicaid • Software company that will make software • Pharmaceutical companies • Survivorship clinics and research centers • Health Professionals • Melissa Hudson, MD • St. Jude, CCSS Principal Investigator, Co-Chair – COG LTFU Guidelines Core Committee Member, Department of Hematology-Oncology Director, Cancer Survivorship Division Professor and Associate Chair, Department of Pediatrics Director, Mailman Center for Child Development ***** • Tara Henderson, MD, MPH • University of Chicago, CCSS Principal Investigator • Kimberley Dilley, MD, MPH • Northwestern University, CCSS Institutional Principal Investigator) • Researchers • Leslie Robison, PhD • (St. Jude, Member of CCSS steering committee, Principal Investigator for CCSS) • Kevin Krull, PhD (St. Jude, Member of CCSS steering committee)
Summary • The mission of WeCancer is to document late effects and enable cancer patients and survivors to inspire others, spread awareness about late effects of cancer and its treatment, and have an outlet for their cancer experiences both before and after active treatment. This will provide timely, comprehensive information to help the ever-growing survivor-population make educated decisions about their health care and prevent expensive and harmful late effects. WeCancer will enable patients and survivors to help others and educate the public about the many preventable late effects that exist. • We Can make a difference with WeCancer
Resources • http://www.cdc.gov/mmwr/preview/mmwrhtml/mm6009a1.htm • http://www.cancer.org/cancer/cancerbasics/cancer-prevalence • http://seer.cancer.gov/statfacts/html/all.html#incidence-mortality • http://seer.cancer.gov/faststats/selections.php?series=cancer • http://thomas.gov/cgi-bin/query/z?c111:H.R.2109: • http://ccss.stjude.org/about/learn-more • http://caonline.amcancersoc.org/cgi/content/full/59/4/225 • http://en.wikipedia.org/wiki/Demographics_of_the_United_States • http://www.kristinasrainbowsofhope.org/facts.html • http://caonline.amcancersoc.org/cgi/content/full/59/4/225 • http://www.cdc.gov/cancer/survivorship/basic_info/index.htm • http://ccss.stjude.org/about/learn-more • http://emedicine.medscape.com/article/990815-overview
Resources • http://www.mayoclinic.com/health/cancer-survivor/CA00073 • http://www.cancer.org/docroot/cri/content/cri_2_6x_late_effects_of_childhood_cancer.asp • http://www.canceradvocacy.org/resources/guide/?cancerrelated_information=long-term-survival-clinics&essential_care=&cancer_type= • http://www.cancer.gov/cancertopics/factsheet/Therapy/followup • http://thomas.gov/cgi-bin/bdquery/D?d111:2:./temp/~bd1cgu::|/bss/111search.html| • http://www.cdc.gov/cancer/survivorship/pdf/plan.pdf • http://www.cdc.gov/cancer/survivorship/what_cdc_is_doing/action_plan.htm • http://www.childrensoncologygroup.org/disc/le/pdf/LTFUGuidelines.pdf • ccss.stjude.org/docs/ccss/concept-prop-05-10. • http://www.cancer.gov/templates/doc.aspx?viewid=14879523-2854-47F1-8482-DB33C774C37D • http://www.cancer.net/patient/Survivorship/Late+Effects • http://www.cdc.gov/cancer/survivorship/ • http://srab.cancer.gov/survival/ • http://www.hhs.gov/ocr/privacy/hipaa/understanding/summary/index.html • http://cebp.aacrjournals.org/content/18/4/1033.full