The Two Worlds Cancer Collaboration Foundation. G. Fyles Director PAX India Medical Leader PSMPC SAHCSI, BC Cancer Agency

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1 The Two Worlds Cancer Collaboration Foundation G. Fyles Director PAX India Medical Leader PSMPC SAHCSI, BC Cancer Agency

2 Covenant Health s 25 th Annual Palliative Care Conference Faculty/Presenter Disclosure There are no relationships that pose a conflict of interest to declare AND this program has been developed without support from commercial entities.

3 International Network for Cancer Treatment and Research (INCTR) NGO founded in 1998 by UICC and Institut Pasteur in Brussels Goal to assist resource constrained countries to: prevent as many preventable cancers as possible cure as many curable cancers as possible improve the quality of life of patients with cancer at all stages of their disease Partners include: National Cancer Institute (USA and France), WHO, IAEA-PACT, European School of Oncology

4 INCTR Palliative Access Program (PAX) Goal is to decrease global suffering caused by cancer through improving access to palliative care services in developing countries. Helped the establishment of Regional Palliative Care Centres in India, Nepal and Tanzania. Centres provide specialized palliative care for adults and children as inpatients, outpatients, at home and in rural settings. Also provide research and teaching resources as well as advocacy for palliative care 4

5 WHO Foundation Measures for Implementing Cancer Pain Relief Programs Education Of the public, healthcare professionals (doctors, nurses, pharmacists) & others (healthcare policy makers, administrators, drug regulators) Drug Availability Changes in healthcare regulations/legislation to improve drug availability (especially of opioids) Government Policy National or state policy emphasizing the need to alleviate cancer pain

6 The Two Worlds Cancer Collaboration Foundation: INCTR Canada Created 2011 Currently focusing on palliative care in India, Nepal Mission: to work with professionals in resourcechallenged countries to reduce the burden of cancer by: building capacity for care, skill development and education, promoting self-sufficiency

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8 2.5 million people with cancer 0.4 million deaths/year Leading sites of cancer Men: oral cavity, lung, esophagus, stomach Women: cervix, breast, oral cavity Andhra Pradesh - 85 million One of highest HIV prevalences in India Hyderabad - pop. 7 million

9 Two Worlds Cancer Collaboration Foundation: INCTR - Canada and South Asia MNJ Institute of Oncology and Regional Cancer Centre (MNJ) Pain and Symptom Management and Palliative Care Program is focus of work in India Only gov t funded Oncology Centre in the state opened 1950s 285 beds, 74 pediatric beds 10,000 new pts/year - 50,000 f/u Surgery, Radiation & Chemotherapy provided free to all below poverty line. Pain Relief and Palliative Care Program (PRPCP) began mid-2006

10 MNJ PRPC Program Clinical care inpt, hospice and outpt Outreach home care, rural program Teaching Advocacy

11 Clinical Service - Adult 75% present in advanced stages Common problems pain, nausea, family breakdown Extensive wounds also common Clinic runs 6 days/week 10 new inpt palliative beds in 2014

12 Adult Patients seen in the Department of Palliative Care Total Cases New Cases

13 Pediatric Oncology 74 beds Parents sleep on floor Mostly acute leukemia High treatment abandonment Two Worlds with Pallium India and OSI funded and trained the first pediatric palliative care fellowship position in India in 2011

14 The two worlds healthcare gap In high income countries More than 80% of young people with cancer survive to live productive and fulfilling lives However in low income countries More than 80% of young people die of their cancer before reaching adult life

15 All children diagnosed with cancer who transit through MNJ Cancer Hospital are seen by the Palliative Care Program.

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17 Over the last 3 years, Zahra Lalani has made a huge contribution to the care of children undergoing chemotherapy treatment: Mentoring RNs in safe chemo prep, delivery, needle safety, hand hygiene Teaching humane IV and LP procedures to RNs and MDs Teaching and conducting art therapy Purchasing hygiene kits

18 Total Children Seen in the Department of Palliative Care Total Cases New Cases

19 Young People With Cancer Project In 2015, Two Worlds Cancer Collaboration, with Dr Palat will initiate an expanded program for young people with cancer and other life-limiting illnesses This will be in addition to its existing support for palliative and end-of-life care for adults and children with cancer Currently the MNJ Pediatric Program is the regional leader in the field and this new Project will build on this

20 Young People With Cancer Project will deliver: A new in-patient unit for year olds with cancer who need treatment not only for cancer but also the physical, emotional, educational and social challenges of adolescent and teen years A new Palliative Care Program for children with illnesses such as HIV/AIDS, thalassemia and other non-cancer life limiting illnesses A dedicated Home Care Team for these children Expanded support for 0-5 year olds at MNJ and 0-12 year olds at Hospice House, MNJ and rural villages

21 Kumudini Devi Hospice 26-bed hospice opened in July 2013 (Four pediatric beds)

22 Kumudini Devi Hospice

23 Life at Your Doorstep Home Care Teams Since new pts and 3519 follow-ups seen

24 Rural Outreach Program 9 villages in Chevella Mandal - 90 minute drive from Hyderabad Screening, early detection, rehab and palliative care Trained village volunteers - partnered with foundation working to prevent child labor

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26 Teaching PRPCP conducts an intensive month - long Certificate Course every 2 months MNJ has become training centre for other Indian cities/states and other countries including Nepal, Ethiopia and Somalia Since 2006, 140 MDs, 79 nurses, 32 healthcare volunteers and 11 social workers as well as many students have completed the Certificate Course

27 Health and Cancer Awareness Sessions in Schools Advocacy Facilitated inclusion of palliative care in state sponsored Health Insurance Scheme for people below poverty line Convinced gov t to amend opioid licensing regulations to improve access national law passed Feb 2014 Working with State AIDS Control Program re: inclusion of pall care training/services for people living with HIV/AIDS

28 Core Programs Supported by 2W in India Dr. Palat s role both at MNJ and nationally/internationally for cancer and non-cancer palliative care for children and adults Dr J Reddy - Pediatric Palliative Care Specialist Life at Your Doorstep Home Care Team Rural Program Expanded pediatric program beginning 2015

29 2W is Making a Difference in South Asia Beyond Direct Clinical Care/Support By Assisting MNJ to : Develop local partnerships Local Indian NGO/Hospice now funding a 2 nd and 3 rd Home Care Vans and Team as of January 2013/Spring 2014 Ambulance donated

30 Engage governments and develop self sufficiency Government/MNJ now funding salaries of some Team members Other states using health insurance scheme proposal 2W paying peds palliative care MD via MNJ -? Will lead to MNJ taking over funding Support from Indo-Canadian community including visits to MNJ

31 Build capacity: Certificate Course First pediatric palliative care fellowship position in India in Government officially recognized PRPCP and specialty of palliative care and created Assoc Prof in Palliative Medicine position

32 Spread the word Multiple presentations at 2013 IAPC Conference 2015 Indian Assoc of Pall Care Conference in Hyderabad hosted by MNJ, 2W

33 Palliative Care Project - St Mary s Hospital, Malur, Karnataka Envisaged as total care with a community approach for Malur and surrounding villages In its 2nd year: Building of 2 nd story on rural hospital, with 10 beds devoted to pall care Outpt clinic Mostly seeing elderly with noncancer and cancer Outreach and home visit program

34 Catholic Health Association of India 71 yrs of experience in India, particularly with pts with HIV/AIDS 3300 member institutions providing care for up to 200 million of the poorest people in India 2W/MNJ/CHAI providing training and accreditation for palliative course and eventually a Palliative Care Training Centre and 10 bed Hospice in Medchal, India

35 Nepal INCTR working in Nepal for a decade on teaching, advocacy, twinning Two Worlds Projects include: Support for NAPCare led Palliative Care Course for nurses in 2013 Nepali version of Essentials in Hospice Palliative Care for Nurses text and workbook

36 Community-Based Palliative Care in Makawanpur District a Pilot Project

37 How donations are used The Canadian expertise used to develop these programs is volunteered through time, expertise, and absorbed costs with limited reimbursements from Two Worlds Less than 5% of the funds raised by Two Worlds is used to fund volunteer travel and overhead costs

38 How can you help? Volunteer Donate Talk to one of us