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Enabling children and their families faced with cancer In India

ACCESSING GOVERNMENT HEALTH CARE PLANS & ALTERNATIVE AVENUES OF SUPPORT. Enabling children and their families faced with cancer In India. We Are. A family support group for children with cancer and their families providing the entire spectrum of childhood cancer support services.

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Enabling children and their families faced with cancer In India

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  1. ACCESSING GOVERNMENT HEALTH CARE PLANS & ALTERNATIVEAVENUES OF SUPPORT Enabling children and their families faced with cancer In India

  2. We Are A family support group for children with cancer and their families providing the entire spectrum of childhood cancer support services

  3. We Are • An Unit of The Indian Cancer Society, Delhi Branch • Member of International Confederation of Childhood Cancer Parent’s Organisation (ICCCPO) • Established in January 2004 in accordance with recommendations of ICCCPO and International Society of Pediatric Oncologists (SIOP)

  4. Our Vision • Every year there are 40-50,000 new cases of childhood cancer in India. • Our vision: • Improve survival rates from 20% to worldwide 80% and better. • No child should suffer for want of treatment for lack of finance. • Provide the entire spectrum of support services • from moment of diagnosis through treatment • in survivorship, • or for palliative care for the terminally ill child and • bereavement support for the families. • to any child with cancer anywhere in the country

  5. Our Mission Enabling Children faced with cancer and their families Ensuring The best possible treatment and care Social Economic Support Reintegration into society Emotional Support Continuity of Care

  6. Our Aim • Increase awareness, thereby helping in earlier detection and treatment of childhood cancer • Help children faced with cancer and their families with • Emotional, social, and psychological support • Financial assistance for treatment • Education during and after treatement for effective reintegration into society •  Information, experience and access to advances in treatment • Empower parents who have been through the cancer journey to reach out and help other families

  7. NO CHILD SHOULD SUFFER FOR WANT OF TREATMENT FOR LACK OF FINANCE Funding is available for the treatment of cancer patients, including children with cancer, from the Government under the following : • The Central Government – Ministry of Health under the Rashtriya Arogya Nidhi Program (RAN), for the full official estimated cost of treatment. This assistance is offered to patients below poverty line (BPL), and requires proof in the form of Ration Card & Income Certificate. (Earlier called National Illness Assistance Fund-NIAF) • The Prime Minister’s Relief Fund (PMNRF) – for 50% of official estimated cost of treatment. ..on recommendation of a Member of Parliament • State Government Chief Ministers’ Funds & Ministry of Health Funds – varying though often limited to upto Rs 2 lakhs. Available to patients below BPL & requires documentation of proof. Not all Govts

  8. NO CHILD SHOULD SUFFER FOR WANT OF TREATMENT FOR LACK OF FINANCE • There is no data available to the public on any of their budgets or the amount of funding assistance available to child cancer patients or the number of patients assisted • The process of sanction of funding is cumbersome and takes a minimum period of 3-4 months • Often BPL patients do not have the right documents and waste precious time going back and forth between their homes and the cancer centre trying to get exactly the right paperwork • The PMNRF requires the patient to bear 50% of treatment on his own, so for all practical purposes is not really available to the poorest of the poor ( sadly in many instances funds sanctioned go unused and back to the Fund)

  9. NO CHILD SHOULD SUFFER FOR WANT OF TREATMENT FOR LACK OF FINANCE • In Government hospitals & RCCs treatment is offered free, but there are still bed charges (though nominal), charges for investigations and tests, and the prohibitive cost of medicines, drugs, equipment, surgeries and radiation. These charges can be waived off for BPL patients but again documentary proof is required. • Some Government hospitals are able to provide some if not all the drugs through their OPDs but it depends on the fund availability and the situation in this regard is sometimes erratic. • There are all the additional costs of travel, accommodation, nutritional support, dislocation of the family, and unemployment & joblessness as in many cases the illiterate mothers stay behind in the villages to look after the rest of the family and the father camps at the treatment centre for months on end. • GOVT HEALTH INSURANCE SCHEMES ARE NON EXISTENT – OTHER THAN CGHS & ESIS (for Govt employees)

  10. NO CHILD SHOULD SUFFER FOR WANT OF TREATMENT FOR LACK OF FINANCE THE CANKIDS MEDICAL ASSISTANCE PROGRAM We are committed to making the funds for tretment available, • by having the child “Adopted”, under our “Adopt a Child Program” • assisting with some part of the treatment from our “Medical Assistance Fund” • “Facilitating ” by helping the family get funds from the Government or some other foundation or fund.

  11. NO CHILD SHOULD SUFFER FOR WANT OF TREATMENT FOR LACK OF FINANCE THE CANKIDS MEDICAL ASSISTANCE PROGRAM - Process Step 1: Filling the PIS form under our “You are not Alone” Program (emergency funds upto Rs 10000/) Step 2 : Clarifications and Recommendation of the treating doctor Step 3 : Medical Committee decision – Re : awaiting adoption /MAF/Facilitation Re: Amount of assistance required – partial or full assistance depending on the circumstances and the doctor’s recommendations Step 4: Children are out on an Awaiting Adoption List , but treatment support continues against the sanctioned amount Drugs, equipment are procured and investigations and tests paid for. Funds are not given to the family. In outstation cases they may be paid into the hospital account

  12. Children Covered In Different Medical Assistance Programs Total Medical Assistance over Rs 2 crores. In 2007-8 Rs 39 lakhs *Out of the total children (1522) financially assisted by CanKids, 12% children with cancer have expired, that we have knowledge of. This against the overall statistic of 80% mortality of both adults and children with cancer in India.BMT – Bone Marrow Transplant ; ACT – After Cancer Treatment # To end Dec 2008

  13. Our Work Core Medical Programs: CP 1. Hospital Programs - at chattai clinics and at hospital wards through - medical and educational assistance - information and facilitation - emotional support and counseling - learning, activities and celebrations for children and their families. CP 2. Financial Assistance Program - assist in accessing Government and other funds - financial assistance through Medical Assistance Fund & “Adopt a child” CP 3. Physical Rehabilitation for disabilities resulting from cancer CP 4. After Cancer Treatment Program - Continuity of Care - Monitor long term effects of cancer treatment - Provide support and gain from Survivorship

  14. Our Work CP 5. Palliative Care Program - for families of terminally ill children - Bereavement support for those who lose their children to the disease. CP 6. Treatment Support Programs - Nutritional Support, Health and Hygiene, Documentation Support Parent Support Group (PSG) Programs empower parents of children with cancer to support each other with: CP 7. Emotional support Program during treatment and after CP 8. Outings Program for outings, gifts and celebrations for entertainment CP 9. Home Away From Home (HAH) to provide accommodation for children and their families coming from outstation for treatment in the city CP 10. Reintegration Program to generate Employment and supplement incomes after expensive cancer treatment and lost jobs to focus on children’s treatment

  15. Our Work Core Education Programs: CP 11. Learning and Activities Program - for little children under treatment - through non-formal instruction, play activities and outings to continue learning and development during their vital years of growth CP 12. Assistance Program - for children after completing treatment - financial assistance and social support to ensure return to school and reintegration in society CP 13. Facilitation Program - for older children under treatment - tutor, mentor and impart life skills - Scholarships and awards Programs to empower and facilitate return to school/college after treatment

  16. Our Work CP 14. Kidscan Konnect (KCK) : a teenage and young adult club - cancer patients/survivors, siblings, peers, and young volunteers - konnect, share experiences and learn life skills to grow and to reintegragte into society CP 15. Psychological Support and Counseling and Evaluation Program - embody ‘‘You Are Not Alone’ - professional support beyond PSG - special counselling programs - Bereavement and Palliative Counselling Clinics and more.. CP 16 : Information and Awareness about Childhood Cancer - treatment and side effects - emotional stress & support systems - developments around the world.

  17. Progress till December 2008 In the last 5 years we have provided • Medical Assistance for treatment and investigations to over 1500 children and over Rs 2.00 crores • Education to children during treatment and financial assistance to return to school to over 100 children • Emotional and Psychological support to over 3000 children and their families, through PSG & Counseling clinics Through • Cankids Haven as a pilot Childhood Cancer Support Centre • Chattai clinics and ward programs • AIIMS Pediatric Oncology Center, Institute Rotary Cancer Hospital (IRCH), • Rajiv Gandhi Cancer Institute, Apollo Cancer Institute, Mahavir Cnacer Sansthan PAtna And • complete range of 16 core support services • 8 management support programs: Volunteer Management, Fundraising, Networking, Planning, Finance, HR, Capacity Building, Training and Administration.

  18. Progress till December 2008 • Raised Rs.3.59 crores (till Dec 2008) from private individuals, corporates, associations and charitable trusts. • Committed to being a highly ethical, and transparent NGO. • Out of Rs 2.69 crores utilized, 85% funds used for medical, educational and other core programs • Administrative expenses controlled under 15% • maintain clear records and patient database • available for scrutiny to all, specially our donors. • Closely followed guidelines of the ICCCPO and SIOP for a sound theoretical and professional basis • Cankids embarked on its National Outreach program in 2008. The Patna unit was started as a pilot project in June 2008 at Mahavir Cancer Sansthan.

  19. We Are • We are an ever growing group of over 50 volunteers and staff, including : • Adult and Teenage survivors and caregivers • Teenage cancer patients • Parents of children with cancer • Professionals in the field of Pediatric Oncology, • psychology, social work, • Educators, academicians and teachers • Volunteers from all walks of life, including • young adults, college and school kids from India & overseas • Committed to doing our best for children with cancer and their families

  20. Recent Initiatives • Home Away from Home - Launched in January 2008 • for upto outstation 22 families in Delhi for child’s cancer treatment • low cost model, with community participation • organized and run by the Cankids PSG • separateisolation room, a school room and multifunctonal areas. • Education Kits and Health and Hygiene Kits – From early 2008 • Bereavement and Palliative Counseling Clinic – From April 2008, and bereavement visits to families who lose their children to cancer • Medical Assistance for children from cancer centres outside Delhi – from April 2008 • Cankids Patna – In June 2008, our first OutStation unit run by 2 PSG families who lost their children to cancer. • Blood Donation Camps – June 2008, for hematological support so parents don’t have to buy blood from touts • National Childhood Cancer Scholarship Program – August 2008

  21. OUR KEY MESSAGES: To families and society at large …. CHILDHOOD CANCER IS CURABLE – when detected early and treated properly – To families of childen with cancer YOU ARE NOT ALONE For our children CHILDREN DESERVE TO BE HAPPY… TO ENJOY… TO CELEBRATE LIFE To ourselves BECAUSE WE AE ABLE…BECAUSE WE CAN (Kyonki Hum Saksham Hain…Kyonki Hum Kar sakte Hain) To our friends, donors and supporters BECAUSE YOU ARE ABLE…BECAUSE YOU CAN

  22. BECAUSE YOU ARE ABLE BECAUSE YOU ARE ABLE ... BECAUSE YOU CAN Can kids….Kids can Because YOU are able Because you can do anything you set your mind to Dream big… Reach for the stars… Touch the sky Hold out a helping hand Be the wind beneath their wings Soaring ever upwards Fly in the face of their storm Then share the joy of a rainbow And bask together in the sun Forever stand tall Be a hero Among heroes Because YOU can !

  23. Contributions • Contributions to CanKids … KidsCan • Cash/Cheque payable to : • Indian Cancer Society : A/c CanKids • (Tax Exempt under section 80 G of Indian Income Tax Act • Foreign Contributions Welcome under section 35 of FCRA ) • Contact : • Poonam Bagai • President • CanKids … KidsCan • D 7/7 (Basement) Vasant Vihar • New Delhi 110057 India • Phone: +91 9811525745 / +91 11 41663670/1/2 • poonambagai@cankidsindia.org • www.cankidsindia.org • Registered Address: Indian Cancer Society , Delhi Branch • Q 5 A Jangpura Extension New Delhi 110014India • Phone: +91 11 24314907 • e-mail: incansoc@nda.vsnl.net.in • Website: www.indiancancersociety.org

  24. Thank You

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