The University of Florida in collaboration with

The Prostate Net Present

The International Workshop on Cancer Advocacy for African

Countries (CAAC)

2011 Workshop Program

Tuesday, November 29, 2011 InterContinental City Stars Hotel, Cairo, Egypt

1 CAAC: Cancer Advocacy: Nuts and Bolts of Advocacy in Your Community

The International Workshop on Cancer Advocacy for African Countries (CAAC) Cancer Advocacy: Nuts and Bolts of Advocacy in Your Community

CONTENTS

The University of Florida...............................................................................2

Welcome to Attendees .................................................................................3

Folakemi Odedina, PhD (Workshop Chair)................................................3

Virgil Simons (Workshop Co-Chair) ................................................4

Workshop Objectives ...................................................................................5

Workshop Planning Committee......................................................................6

Workshop Agenda .......................................................................................7

International Workshop on Cancer Advocacy Awardees .............8

Workshop Sponsors .....................................................................................9

Workshop Presenters .................................................................................10

Notes Pages..............................................................................................12

2 CAAC: Cancer Advocacy: Nuts and Bolts of Advocacy in Your Community

The University of Florida (UF) is a major, public, comprehensive, land-grant, research university. The state’s oldest and most comprehensive university, UF is among the nation’s most academically diverse public universities. UF has a long history of established programs in international education, research and service. It is one of only 17 public, land-grant universities that belongs to the Association of American Universities.

History In 1853, the state-funded East Florida Seminary took over the Kingsbury Academy in Ocala. The seminary moved to Gainesville in the 1860s and later was consolidated with the state’s land-grant Florida Agricultural College, then in Lake City. In 1905, by legislative action, the college became a university and was moved to Gainesville. Classes first met with 102 students on the present site on Sept. 26, 1906. UF officially opened its doors to women in 1947. With more than 50,000 students, UF is now one of the largest universities in the nation.

Facilities UF has a 2,000-acre campus and more than 900 buildings (including 170 with classrooms and laboratories).The northeast corner of campus is listed as a Historic District on the National Register of Historic Places. The UF residence halls have a total capacity of some 7,500 students and the five family housing villages house more than 1,000 married and graduate students.

UF’s extensive capital improvement program has resulted in facilities ideal for 21st century academics and research, including the Health Professions, Nursing and Pharmacy Building; the Cancer and Genetics Research Center; the new Biomedical Sciences Building; and William R. Hough Hall, which houses the Hough Graduate School of Business. Overall, the university’s current facilities have a book value of more than $1 billion and a replacement value of $2 billion.

Academic Programs Florida has 16 colleges and more than 100 research, service and education centers, bureaus and institutes. More than 100 undergraduate majors are offered. Over 1,200 freshmen and sophomores participate in the honors program, which offers nearly 100 honors courses per semester. Most classes are limited to no more than 25 students.

The University Scholars Program introduces UF undergrads to the exciting world of academic research by allowing them to work one-on-one with Florida faculty on selected research projects. The Graduate School coordinates almost 200 graduate programs. Professional degree programs include dentistry, law, medicine, pharmacy and veterinary medicine.

A Leading Research Institution Research awards have risen steadily over the decades to last year’s $574 million, placing UF among the nation’s leading institutions. More than $289 million of that total was for health-related research, representing a significant portion of the state’s intellectual and economic commitment to biotechnology. Researchers at the Institute on Aging, the McKnight Brain Institute, the UF Genetics Institute, the UF Shands Cancer Center, and the Emerging Pathogens Institute—and throughout the six colleges of the Health Science Center—study everything from adult stem cells to gene therapy.

From Laboratory to Marketplace The new economy encourages the rapid progression of discoveries from the laboratory to the marketplace, and UF is a national leader in this area. The success of the sports drink Gatorade is well known, but it is just one of many UF products that have benefited countless people. Other important products include Trusopt, a leading treatment for glaucoma, and the Sentricon Termite Elimination System.

Student Research The university’s graduate programs have produced generations of professionals in a wide variety of disciplines, many of whom have risen to positions of prominence in our state, the nation and the world. Graduate education and research go hand-in-hand. The great discoveries of the 21st century will undoubtedly come from the creative efforts of university faculty working closely with bright and motivated graduate students. Graduate students, particular those pursuing the doctoral degree, broaden the knowledge base of their disciplines in countless ways. UF undergrads, through the University Scholars Program, work one-on-one with Florida faculty on selected research projects.

3 CAAC: Cancer Advocacy: Nuts and Bolts of Advocacy in Your Community

4 CAAC: Cancer Advocacy: Nuts and Bolts of Advocacy in Your Community

5 CAAC: Cancer Advocacy: Nuts and Bolts of Advocacy in Your Community

WORKSHOP OBJECTIVES

Non-communicable diseases (NCDs) are estimated to be the leading causes of morbidity and mortality in developing countries, especially Africa. About 20% of the deaths from NCDs in Africans over 45 years is predicted to be from cancer. Known as Africa’s silent killer, cancer is now a major public health problem in Africa, with the five most frequent cancers being Breast, Cervix, Liver, Prostate and Non-Hodgkin Lymphoma. However, cancer continues to be underestimated and ignored in Africa. The little attention being given to cancer has led to unnecessary deaths and suffering from cancer. Unfortunately, cancer advocacy is currently limited and weak in Africa, thereby making cancer issues of low priority in African countries.

Our lon g-t erm goal is to make cancer a top priority in Africa. In pursuit of our goal, the object iv e of t h is w ork sh op is to train cancer advocates who will be empowered to engage their communities, develop, and implement cancer health and survivorship programs. Utilizing an innovative framework for the workshop, we will provide participants with the skills to: [1] mobilize the resources within African countries for health promotion, prevention, and survivorship strategies; [2] partner with key stakeholders to accomplish targeted objectives; [3] raise funds to support advocacy activities; and [4] develop and successfully organize community-centered programs.

The learning objectives for this workshop were identified by cancer advocates in Africa through a SWOT analysis and are as follows:

1. Provide opportunities for mutual learning, knowledge transfer, and collaborations among cancer

advocates. At the end of the conference, participants will be able to:

a. Assess and track the cancer health needs of their communities; b. Conduct a SWOT analysis to develop effective strategies, including the development of

a local community action plan; c. Initiate and develop partnerships with other stakeholders to address the needs of their

communities; d. Organize and implement programs to: (i) raise public awareness about cancer, (ii)

provide support to those living with cancer, (iii) help advance cancer research and training, (iv) improve the quality of cancer care, and (v) address legislative and regulatory issues that affect cancer care and research in Africa; and

e. Utilize evaluation tools to determine, document, and improve the program outcomes of programs implemented in their communities.

2. Facilitate networking among individuals involved in cancer control, education and research in Africa.

3. Facilitate the development of a global community of practice to address common challenges in

cancer advocacy in Africa.

4. Contribute to a global impact against cancer through advocacy.

6 CAAC: Cancer Advocacy: Nuts and Bolts of Advocacy in Your Community

WORKSHOP PLANNING COMMITTEE

Chair

Folakemi T. Odedina, PhD is Professor of Pharmacy and Director of the Prostate Disease Center Outreach Program. Her research program focuses on understanding and developing interventions to reduce the disproportionate burden of prostate cancer among Black men globally. Through her research program, she has facilitated global collaborations among scientists, clinicians, survivors and advocates to better understand the etiology of prostate cancer. Prof. Odedina founded and leads the Florida Prostate Cancer Disparity Group and the Prostate Cancer Transatlantic Consortium. She also serves on several international cancer committees.

Co-Chair

Virgil H. Simons, MBA is the Founder & President of The Prostate Net, a non- profit patient education and advocacy organization. Using the experiences gained as a 15-year survivor of prostate cancer and a patient advocate, Virgil has built an international organization that uses a matrix of informational techniques (Website, 800#, PodCasts, Cell Cast networks, email and personal team counselors, public forums, newsletters and community disease interventions) to address disease risk awareness and early disease interdiction.

Co-Chair Richard Segal, PhD is Professor and Chair of the Department of Pharmaceutical Outcomes & Policy in the University of Florida College of Pharmacy and holds faculty appointments in the College of Public Health and the University’s Cancer Center. His expertise is in the area of outcomes research and he has served as PI or co-PI on numerous intervention studies intended to shape patient and provider behavior toward evidence-based practice. P r o f . Segal and his research team have investigated the role of several psychosocial variables in underrepresented populations including African Americans and Hispanics and the instruments they developed are widely used by researchers in examining constructs such as temporal orientation in African American health-related behaviors.

Coordinator Shannon Pressey, MS is the workshop coordinator and the research coordinator for the UF Pharmaceutical Outcomes & Policy department; and also manages the Prostate Disease Center Community Outreach and Education program. She graduated from Florida A&M University with a Bachelors degree in Healthcare Management and Masters Degree in Pharmaceutical Outcomes in 2009. She has managed health disparity research projects for over three years. Her experiences include teaching pharmacy students, coordinating national/international conferences, research project management, minority men recruitment, and statewide data coordination.

7 CAAC: Cancer Advocacy: Nuts and Bolts of Advocacy in Your Community

AG

EN

DA

AT

GL

AN

CE

Tuesday, November 29 9:00 – 9:30 Welcome and Program Overview

Virgil Simons, MPA – Founder & President – The Prostate Net (USA) Folakemi Odedina , PhD – Professor & Director - University of Florida (USA)

9:30-10:30 Setting the Stage for Cancer Advocacy in Africa: What and Why? Folakemi Odedina , PhD (USA) & Virgil Simons, MPA (USA)

10:30-10:45 Tea Break 10:45 – 12:30 Best Practices for Cancer Advocacy

Roundtable Discussions Presided by J. Olufemi Ogunbiyi, MBBS, FWACP, IFCAP (Nigeria)

Support Advocacy - Emmanuel Kandusi (Tanzania) Community Outreach Advocacy - Wondu Bekele (Ethiopia) Education Advocacy - Alpha Kamara (Sierra Leone) Political Advocacy - Adetola Daramola (Nigeria) Research Advocacy - Virginia Mapara (Zimbabwe) Fundraising Advocacy - Trevor Steyn (South Africa)

12:30 – 13:00 Group Report Back on Best Practices for Cancer Advocacy

Presided by J. Olufemi Ogunbiyi, MBBS, FWACP, IFCAP (Nigeria)

12:30 12:35 12:40 12:45 12:50 12:55

Support Advocacy by Emmanuel Kandusi (Tanzania) Community Outreach Advocacy by Wondu Bekele (Ethiopia) Education Advocacy by Alpha Kamara (Sierra Leone) Political Advocacy by Adetola Daramola (Nigeria) Research Advocacy by Virginia Mapara (Zimbabwe) Fundraising Advocacy by Trevor Steyn (South Africa)

13:00 – 14:30 Lunch

Keynote Presentation Partnering with Elected Officials to Advocate Cancer-related Policies

Anthony “Tony” Hill, Sr., - State Senator Florida, Retire (USA) 14:30 – 15:00 Understanding Your Community and Assessing your Community

Health Assets and Needs Folakemi Odedina, PhD (USA)

15:00 – 15:30 The Prostate Cancer Roundtable: Gaining Political Advantage Scott Williams, BA (USA)

15:30 – 15:45 Tea Break

15:45 – 16:30 Finding the Lethal Phenotype: Research Partnership Needs Tim Rebbeck, PhD (USA) & Virgil Simons, MPA (USA)

16:30 – 17:00 Engaging the Media & Promoting Your Program Renee Reams, PhD (USA)

17:00 – 17:15 African Advocacy Consortium/Network Folakemi Odedina , PhD (USA) & Virgil Simons, MPA (USA)

17:15 – 17:30 Evaluation & Adjourn Richard Segal, PhD (USA)

8 CAAC: Cancer Advocacy: Nuts and Bolts of Advocacy in Your Community

INTERNATIONAL WORKSHOP ON CANCER ADVOCACY AWARDEES Through the generous support of the National Cancer Institute (Award Number R13CA162899), the following delegates were selected from a pool of 163 exceptional candidates as recipients of this year’s workshop scholarship funds. Our scholarship program allows us to further our mission of cancer advocacy in Africa.

Abdulkareem Fatimah Nigeria Agunwah Elizabeth Nigeria Bamgbose Faosat Nigeria Bekele Wondu Ethiopia Chigbu Chioma Nigeria Daramola Adetola Nigeria Dzamalala Charles Malawi Gouimi Bahija Morocco James Oluwafunmilola Nigeria Kamanga Lester Malawi Kamara Alpha Sierra Leone Kandusi Emmanuel Tanzania Kasigwa Betty Uganda Kiwanuka Rose Uganda Mabhena Sithembile Zimbabwe Maiga Djibo Ibrahim Niger Mapara Virginia Zimbabwe Mavu Junior Zimbabwe Mbithi Katheke Kenya Moonga Brian Zambia Msemo Diwani Tanzania Mwangura Ferdinand Kenya Ogunbiyi Olufemi Nigeria Orithshesholaye Olutayo Nigeria Pooe-Shongwe Molebatsi Capetown Pretorius Lauren Capetown Rithara Stella Kenya Steyn Trevor Capetown Were Pamela Kenya Yay Gabrielle Cameroon

9 CAAC: Cancer Advocacy: Nuts and Bolts of Advocacy in Your Community

WORKSHOP CO-SPONSORS

Department of Pharmaceutical Outcomes and Policy University of Florida College of Pharmacy

Gainesville, Florida, USA

University of Florida Shands Cancer Center Gainesville, Florida, USA

University of Florida College of Pharmacy Gainesville, Florida, USA

Office of the Vice President of Research University of Florida

Gainesville, Florida, USA

10 CAAC: Cancer Advocacy: Nuts and Bolts of Advocacy in Your Community

WORKSHOP PRESENTERS Anthony “Tony” Hill, Sr. (USA), - born September 9, 1957 is retired from the Florida senate, after first being elected in November 2002, and subsequently re-elected to four year terms in 2004 and 2008. Recently, as of June 30, 2011 Senator Hill was appointed by Mayor Alvin Brown (Jacksonville, FL) to join his administration as Federal Government Liason. During the 2008 Elections Senator Hill served as Florida’s Co-Chair of the Florida Change Committee (and as a member of the Florida Advisory Council) for Senator Barack Obama’s successful bid for the Presidency. In 2008, Senator Hill was elected to a four-year term as a member to the Democratic National Committee and the Florida Democratic Executive Committee. In September 2009 the national political magazine, Campaign and Elections Magazine included Senator Hill as one of the fifty Democrats in “People of Influence in Florida.” Prior to being elected to the Florida Senate, Hill was elected to the Florida House of Representatives, District 14, in 1992

and subsequently re-elected, unopposed, for three consecutive terms.

Folakemi T. Odedina, PhD (USA) is Professor of Pharmacy, Director of the Prostate Disease Center Outreach Program, and Member of the Shands Cancer Center at the University of Florida. Her research program focuses on understanding and developing interventions to reduce the disproportionate burden of prostate cancer among Black men globally. Through her research program, she has facilitated global collaborations among scientists, clinicians, survivors and advocates to better understand the etiology of prostate cancer. Prof. Odedina founded and leads the Florida Prostate Cancer Disparity Group and the Prostate Cancer Transatlantic Consortium. She also serves on several international cancer committees.

R. Renee Reams, PHD (USA), is a biochemist and tenured professor in the basic pharmaceutical sciences division in the College of Pharmacy and Pharmaceutical Sciences at Florida A&M University in Tallahassee, Florida, USA. To date she has trained six PhD, three Master students and more than 51 undergraduate research trainees. Her research is focused on finding biomarkers for distinguishing lethal versus indolent prostate disease in African and African American Men. She uses cDNA micro array, bioinformatics and molecular biology to understand the higher mortality, higher incidence and the more aggressive prostate cancers aggressive in men of African descent. The biobehavioral aspects of her work is addressed through continued collaboration with colleague, Prof. Folakemi Odedina, and their Prostate Cancer Transatlantic Collaborative (CaPTC). Prof. Reams strongly advocates the use of media to promote one’s research program and will share with us what has worked for her and her collaborators in “engaging the media”. Prof. Reams’ recent media

activities include three taped television segments on Research Fundamentals, a Florida A& M University campus program that reaches 40,000 community households; broadcast on Nigerian TV

11 CAAC: Cancer Advocacy: Nuts and Bolts of Advocacy in Your Community

WORKSHOP PRESENTERS (continued) (2009) during a visit to The National Institute for Pharmaceutical Research (NIPRED). In September 2011, Prof. Reams was one of the DoD scientists featured in a short video clip on the 2011-2012 Department of Defense website during prostate cancer awareness week.

Tim Rebbeck, PhD (USA) is Professor of Epidemiology, Director of the Center for Genetics and Complex Traits, Director of the Laboratory for Molecular Epidemiology, and Associate Director for Population Science in the Abramson Cancer Center at the University of Pennsylvania. He leads molecular epidemiologic studies to identify and characterize cancer genes; understand the relationship of allelic variation of these genes with cancer occurrence and cancer outcomes; and evaluate the role of these genes in cancer etiology and outcomes in the context of the demographic, biochemical, environmental, and physiological risk factors.

Virgil H. Simons, MBA (USA) is the Founder & President of The Prostate Net, a non-profit patient education and advocacy organization. Using the experiences gained as a 15-year survivor of prostate cancer and a patient advocate, Virgil has built an international organization that uses a matrix of informational techniques (Website, 800#, PodCasts, Cell Cast networks, email and personal team counselors, public forums, newsletters and community disease interventions) to address disease risk awareness and early disease interdiction.

Scott Williams, BA (USA) is currently Vice President of Men’s Health Network (MHN), a Washington, DC based national non-profit organization whose mission is to reach men and their families where they live, work, play, and pray with health prevention messages and tools, screening programs, educational materials, advocacy opportunities, and patient navigation. Prior to joining Men’s Health Network, Scott was a Senior Analyst of Strategic Services at PharmaStrat, Inc. based in Flemington, NJ. Scott is a peer reviewer and contributing author to the American Journal of Men’s Health, a SAGE Publication. He founded the Men’s Health Caucus within the American Public Health Association and also serves as the Membership Chair for the Community Health Planning and Policy Development Section.

12 CAAC: Cancer Advocacy: Nuts and Bolts of Advocacy in Your Community

WORKSHOP NOTES

13 CAAC: Cancer Advocacy: Nuts and Bolts of Advocacy in Your Community

WORKSHOP NOTES

14 CAAC: Cancer Advocacy: Nuts and Bolts of Advocacy in Your Community