Group 6 Empowering the Public to Drive Policy Development: Role of - PowerPoint PPT Presentation

Group 6 Empowering the Public to Drive Policy Development: Role of Media, Government and Non-Profit Organizations Pankaj Chaturvedi (Chair), Terry Day, Mark DeLacure, March 4 th /5th 2016 Brian Hill, Matthew Myers, Michael Walton, Hiroshi Ogawa (Moderator) ,

Pankaj Chaturvedi FAIS, FICS, FACS, MAMS Head and Neck Cancer Surgeon, Tata Memorial Hospital, Mumbai, India Chair, Group 6 chaturvedi.pankaj@gmail.com Terry A. Day MD Professor, Department of Otolaryngology, Head and Neck Surgery Medical University of South Carolina dayt@musc.edu Mark D. DeLacure, MD FACS Associate Professor, Otolaryngology, Head and Neck Surgery & Plastic Surgery New York University Langone Medical Center mark.delacure@nyumc.org Brian Hill Founder and Executive Director, The Oral Cancer Foundation bhill@oralcancerfoundation.org Matthew L. Myers President, Campaign for Tobacco-Free Kids mmyers@tobaccofreekids.org Michael Walton NDD, ATD, MBE Founder/ Chair, The Ben Walton Trust, UK m.k.walton1@btinternet.com Dental Officer, World Health Organization

Group 6 Empowering the Public to Drive Policy Development: Role of Media, March 4 th /5th 2016 Government and Non (For) -Profit Organizations

Introduction and Setting the theme - • Pankaj Chaturvedi - 15 mins • Brian Hill - 10 mins K NO W Oral Cancer! Terry Day - 5 mins • • Michael Walton - 5 mins • Mark DeLacure - 5 mins • Matt Myers - 5 min Panel Discussion - 45 mins Moderator - Hiroshi Ogawa • Pankaj Chaturvedi • Brian Hill • Terry Day Michael Walton • • Mark DeLacure • Matt Myers

Too much but too little !

Diagnostic Adjuncts – long way to go! http://www.cdxdiagnostics.com/ http://www.exodontia.info/

Chemoprevention – needs course correction • Cis Retinoic Acid – doesn’t work • Vitamin E – word of caution! • Bowman-Birk inhibitor concentrate (BBIC) - little role • Curcumin – No Clinical response • Green tea polyphenol epigallocatechin-3- gallate. • Spirulina • NSAIDs • Targeting COX-2 and EGFR

Oral Cancer – Health issue Oral Cancer Control – Socio Political issue

Medical Societies should engage in lobbying Pulitzer’s Iron triangle

Mr Obama is asking Congress for $309 Million next year to scale up the initiative

Cost of genome sequencing Keyan Salari et al. Eur Heart J 2012;33:1564-1570

Corporate Accident Terrorism Greed Oral Cancer is a crime against humanity! Personal choice?

It is an voluntary advocacy campaign to support the MOHFW to achieve it’s tobacco control objectives

Sensitization of Ministers

Media / Outdoor Campaign

Politically beneficial activity 20

IMPACT?? Dec 2010 SC seeks Feb 2011 April, Health Health 2012 MP – report & report 1 st state to bans submitted ban Gutka plastic April, 2013 SC bans Gutka all over July 2013 Maharashtra bans flavored SLT Source - Euromonitor 2014 Thousand Tonnes Million INR

Forecast of SLT from 2013-18 (INR Million) 60 50 40 30 Source - Euromonitor 2014 20 10 0 2013 2014 2015 2016 2017 2018

Study conducted in 7 states of • • Gutka virtually disappeared from display in retail outlets • 99% in agreement that bans have a positive impact in reduction. 92% support for gutka ban • • Of the respondents that quit since the bans, a substantial portion in each state (41-88%) reported quitting because of ban. (*Johns Hopkins University Bloomberg School of Public Health & WHO Study, December 2014)

Areca nut Policy • Areca Nut is a food substance • Oral cancer and Submucus Fibrosis are food borne disease • Several states have started banning Flavored Areca Nut

Pictorial Warning in India

300 Doctors wrote to Prime Minister Met Finance Minister / Secretary Media Advocacy

The game changer!

When will doctors rise against alcohol??

Promote Oral Health!

Beauty lies in simplicity!

Primary Prevention ATA Control Secondary Prevention Tobacco Cessation Visual Inspection Screening

Lets break the silos and be strategic!

Previous date: 16 to 19 August 2017

Brian Hill

Empowering the public to drive policy development - the role • of media, government and non-for-profit organizations. Chair: Dr. Pankaj Chaturvedi, Tata Memorial Hospital Mumbai • (India) • Moderator: Hiroshi Ogawa, World Health Organization • Panelist: Terry Day

Global Awareness and Advocacy in Oral Cancer Prevention Evren Erkul, Terry Day 4-5 March 2016, New York, USA

Conflicts or Supporting Interests • Head and Neck Cancer Alliance, Inc • American Head and Neck Society, Inc. • International Association for Oral Oncology • Medical University of South Carolina

The Crete Declaration

History The Yul Brynner Head and Neck Cancer Foundation Did Yul ever dream that he would be facing the facts of legalized marijuana, E-Cigs, vaporized combinations, packaged chew/dip/snuff/edibles ???

Why are we here? • Control oral cancer – Prevent oral cancer – Early detection of oral cancer

What is the problem? • High incidence • Preventable Risk factors but not public knowledge • Late stage at diagnosis results in higher mortality

Why is Oral Cancer Awareness Important? • A recent cross sectional study of general US population (Luryi et al. 2014) showed a lack of knowledge of oral, head and neck cancer types Each of these cancers were identified by less than 5% of respondents Figures courtesy of Yale School of Medicine

Why Oral Cancer Awareness is Important (Luryi et al. 2014) • When asked respondents could not correctly identify many signs and symptoms of oral, head and neck cancer These signs and symptoms were identified by less than 3% of respondents The most common response was incorrect

Why Oral Cancer Awareness is Important (Luryi et al. 2014) • Furthermore, respondents did not show much knowledge of risk factors for head and neck cancer Risk Factor for Head and Neck Cancer % of respondents aware • Of a total of 2126 respondents: Smoking 54.5 Alcohol 4.8 Chewing/spitting tobacco 32.7 Sun exposure 0.5 HPV infection 0.8

ORAL CAVITY ONLY SEER HNSCC 68,000 + Patients Fritsch, et al, AHNS, NYC, 2014 TONGUE ALVEOLAR FLOOR OF MOUTH RIDGE BUCCAL

ORAL CAVITY ONLY Zhan, et al, 2016. Unpublished Data Stage 1 Stage 2 Stage 3 Stage 4

What can advocacy groups do? • Use media, internet, TV, celebrity • Support ideas that are common sense but don’t have a p value < .00000005 • Advocate for legislation • Obtain funding from industry, NIH, private sector • Work together with govt, dental and medical societies, industry, academia, WHO…

Support/Advocacy/Detection/ Prevention/Education/Research

Advocacy in HN Oncology And others

Vested Organizations

Legislation

Global Partnerships: Screening & Education Phillippines United Kingdom Pakistan

Opportunities for NGOs and NPOs • Expand education and awareness to public and health professionals by working closely with international government supported agencies(WHO, IARC, CDC, NCI, etc) • Work with academic dental and medical centers to study the role of curricula changes and institute standardized board exam and CME/CDE questions into national exams Collaborate with corporate/pharma to study new diagnostic aids to • enhance early diagnosis • Agree to disagree on the “screening question” and revert back to a minimum common denominator(ie, “oral examination”)

Summary • Non profit and advocacy groups have opportunities to: • Expand knowledge and awareness • Support interventions not government approved • Move the stage at diagnosis lower

THANK YOU!

Empowering the public to drive policy developments  Speaker: Michael Walton, Founder/Chair of The Ben Walton Trust

The Ben Walton Trust  Trust established in 1996 after the death of Ben, aged 22, from oral cancer.  www.benwaltontrust.org

Aims of The Trust  To raise awareness of mouth cancer amongst general public and health professionals  To fund research  To encourage appropriate palliative care

The Facts  Mouth cancer kills  7700 new cases per annum in the UK (Scotland, 770)  Almost 2000 people die of the disease per annum (one person every five hours)  Early detection and rapid treatment dramatically improve survival  Increasing number of younger men and women affected  Traditional risk factors do not always apply  If in doubt, check it out

What The Trust Does  Funds research into mouth cancer in the under 45s  Collaborates with the media and health professionals to increase awareness  Provides emotional and financial support to vulnerable patients  Develops training resources for healthcare professionals