Cancer and Childhood Cancer Care in India – FIVE reasons why I am POSITIVE and MOTIVATED on our 74th Independence day

Today we complete 73 years of our independent existence and celebrate our 74^th Independence day. The strides we have made as a nation are truly enormous and are acknowledged widely. At the same time, the challenges which remain are no less mighty and we need to continue on the path of relentless progress to overcome hunger, poverty, ill health, strife, pollution, among others.

At this time I reflect on the cancer and childhood cancer care in India, and despite the many challenges which we face in this area, I have found FIVE reasons why I as a pediatric oncologist am POSITIVE and MOTIVATED on this day and look forward to the coming year and decade with great anticipation.

REASON ONE – WHO Global Initiative for Childhood Cancer (GICC)

Active involvement of the WHO and launch of the GICC in 2018 (https://www.who.int/cancer/childhood-cancer/en/) has been a landmark development for all stakeholders in pediatric oncology across the world. Work has already started in several countries including Myanmar which is in the South Asian region. Some work has also begun in India last year with meetings with the professional societies and the parent groups. This year, the Ministry of Health and Family Welfare, Government of India along with the WHO SEARO office have selected 4 centres (BBCI Guwahati, Kidwai Hospital Bangalore, Kalawati Saran Hospital New Delhi and Tata Memorial Hospital Mumbai) to be National Centres of Excellence for Childhood Cancer services. Many more activities and initiatives will follow to help India reach the target of 60% survival rate for children with cancer by 2030.

REASON TWO – National Cancer Grid (NCG)

For too long we have had a plethora of national societies in all spheres of medicine including oncology and pediatrics, which seem to exist from meeting to meeting, seminar to seminar. Most professional medical societies in India have not taken up the cause of the patient, and addressed the deficiencies in healthcare in a big way. Enter National Cancer Grid (https://tmc.gov.in/ncg/) in 2012 – today it is a network of >200 major cancer centers, research institutes, patient groups and charitable institutions across India. Led very ably by Dr CS Pramesh it has launched and successfully executed a host of collaborative activities – Disease Management Group specific Virtual Tumour Boards, Online second opinion service through Navya, CRedO Workshop for researchers, are just a few of the many initiatives which are ongoing or in development.

REASON THREE – Indian Pediatric Oncology Group (InPOG)

Multicentre collaborative research is critical if India wants to make progress in the care and outcomes of its children with cancer. InPOG (https://www.phoindia.org/cms/inpog-faqs) has been active since the beginning of 2015 and as of December 2019 (in five years) 5543 patients have been recruited in 15 studies (40% interventional and 60% non-interventional studies) from 90 centres. It now enters into its next phase and promises faster and greater developments.

REASON FOUR – Cankids

Driven by the relentless energy of its founder Poonam Bagai, Cankids (https://www.cankidsindia.org/) has blazed the trail in India as well as globally, showcasing how patients, parents and civil society can contribute to childhood cancer care. They not only provide vital social and psychological support for children with cancer and their families, but are leading engagement with state governments on Change for Childhood Cancer in India (http://childhoodcancerindia.blogspot.com/2017/09/supporting-childhood-cancer-treatment.html) and have done a phenomenal amount of work during COVID-19 ensuring that the treatment of patients is not disrupted.

REASON FIVE – Max Healthcare and Max Institute of Cancer Care

My workplace and my employer (https://www.maxhealthcare.in/) have consistently demonstrated, never more than now in these COVID-19 times, that it is possible to deliver high quality care to cancer patients while balancing social responsibility and driving academics and research in the private sector. Solving India’s healthcare challenges would need partners in all sectors of healthcare and Max has shown the way. Thank you Mr Abhay Soi and Dr Harit Chaturvedi for your inspirational leadership

-->

Childhood cancer survivorship and late effects: The landscape in India in 2020

Cure from childhood cancer is now a justifies expectation and with the right treatment most children would get cured of their cancer and achieve long-term survival. While the goal is that this long-term survival is normal, experience has taught us that some survivors suffer from late side-effects. This has been an area of intense focus in the last few decades and there is now growing evidence on how to prevent and treat these late side-effect.

So far, the information from India has been limited and scattered. We mad an attempt to bring this all together and are happy to share our recent publication on this in the Pediatric Blood Cancer - Childhood cancer survivorship and late effects: The landscape in India in 2020

We highlight not only the steadily increasing work going on with childhood cancer survivors in the hospitals, but also the efforts taken by healthcare providers, and other stakeholders in developing this service, advocating for this cause and providing survivors with a platform. A special mention of two such organisations - Ugam and Cankids - who contributed to this effort.

International Childhood Cancer Day 2018

15th Feb is celebrated as International Childhood Cancer Day every year across the world. This day celebrates those who have successfully conquered this disease and remembers those who did not make it. It spotlights the problem and the solutions. It brings together all stakeholders who are fighting to address this problem.

On this occasion several international and national organisations take a renewed pledge of commitment to these patients. Below are two press releases - the first by SIOP and CCI and the second by Cankids

Together for Advancing Cures, Transforming Care, Instilling Hope

Geneva, Switzerland - February 15, 2018 - International Childhood Cancer Day (ICCD) is celebrated around the world each year on February 15th. Originally commemorated in 2002, ICCD is a day founded by ChildhoodCancer International (CCI), a global network of 188-member organizations in 96 countries. Childhood Cancer International is committed to advancing cures, transforming care, and instilling hope for all children and adolescents diagnosed with cancer in the world, wherever they may live. Established in 1969, the InternationalSociety of Paediatric Oncology (SIOP), with over 1500 healthcare professional members, is the lead organization concerned with the issues of treating children and young people who have cancer. SIOP is committed to improve childhood cancer care globally through education, supporting and improving clinical and basic research and advocating for childhood cancer on a global level. Both societies share a long and fruitful synergistic cooperation. 

Childhood Cancer International and SIOP are not alone in recognizing the devastating impact of childhood cancer on children and families around the globe. In September 2011, the United Nations (UN) General Assembly issued a Political Declaration recognizing four major Non-Communicable Diseases/NCDs (cancer, cardiovascular disease, diabetes and chronic respiratory disease) as the greatest killers of adults and children. 

Sadly, childhood cancer continues to be the leading cause of non-communicable related death in children throughout the world. Globally, more than 300,000 children are diagnosed with cancer each year. Approximately 80 percent of our world’s children with cancer live in low-middle-income countries (LMICs) where more than 80 percent of these children die of their disease. In developed countries like the United States, Canada, United Kingdom, Japan and others, more than 80 percent of children survive cancer with hope to live productive and meaningful lives. 

On December 13, 2017 a new report from WHO and the World bank revealed that approximately half of the world’s population, including children, do not have access to essential health services and that 800 million people spend at minimum 10 percent of their household income on health-related care. Childhood cancers are often curable but too many children and adolescents have no hope to overcome their disease simply because they were born in a country entrenched in poverty resulting in late diagnosis, lack of access to life-saving essential medicines and appropriate treatment. As childhood cancer organizations, we know only too well that the associated cost to treat a child with cancer can be a burden that too many families simply can’t overcome. We support the need for universal access to essential medicines and healthcare for all children in the world diagnosed with cancer. In order for this to happen, CCI and SIOP agree that making childhood cancer a national and global child health priority is a critical first step towards increasing access to treatment and reducing childhood cancer mortality. 

All children in the world deserve hope for a cure - no matter where they live - not more excuses. We can no longer sweep this issue “under the rug.” Children are the future of our country and our world. Their vitality is the heartbeat of our world, a shared passion that can unite us because our future as a global community depends on it. 

On International Childhood Cancer Day, all members of Childhood Cancer International and SIOP stand united to make childhood cancer a national and global child health priority to ensure there are adequate resources to meet the basic rights of children with cancer. We believe those basic rights for all children diagnosed with cancer include: 

• The right to early and proper diagnosis;
• The right to access life-saving essential medicines;
• The right to appropriate and quality medical treatments, and; 
• The right to have access to sufficient palliative care;
• The right to follow up care, services and sustainable livelihood opportunities for survivors. 

There can be no more ‘but.’ United together towards a shared vision we can advance cures, transform care, and instil hope. For further actions please visit the official ICCD 2018 Campaign Website www.internationalchildhoodcancerday.org 

RAISE YOUR VOICE TOGETHER WITH CHILDREN WITH CANCER 

I DESERVE – MY CHILDHOOD MY LIFE

New Delhi 15th February 2018 

February 15th is celebrated worldwide as International Childhood Cancer Day – aimed at creating awareness and advocating for childhood cancer as much for honoring the bravery and courage of children fighting cancer in our State, country and worldwide. 

Internationally Childhood Cancer Day is spearheaded by Childhood Cancer International – an umbrella organization of 188 parent, survivor and social support organizations like Cankids, in collaboration with SIOP (International Society of Pediatric Oncologists). http://www.cankidsindia.org/iccd-2018.html) 

Every year Cankids Kidscan, National Society for Change for Childhood Cancer, and member of Childhood Cancer International (CCI) celebrates ICCD across the country. Last year, 1580 children with cancer from 21 cities across India attended the ICCD celebrations. Children at all centers visited a monument of the city to celebrate ICCD and teachers educated children about the monument and how it symbolizes victory in some battle. The “We Are One” Childhood Cancer solidarity song was translated into regional languages and sung by children in different cities.

This February 15th, 2018 happy to inform you that this year we are doing it in a much bigger and grander way together with many other NGO partners and childhood cancer treating centers. 

Our theme for ICCD is Go Gold India – Mera Haq, Mera Bachpan, Mera Jeevan – I Deserve My Childhood My Life. Families will participate in “I Deserve competitions and we will have kite making activities at the Learning activity Clinics in OPD and Wards, where children will make kites and together with their families write their prayers and messages. Children will be taken for an outing to a park where they can fly kites. The messages on the kite will reflect our theme and advocate to the governments that “Childhood Cancer should be a Child Health Priority in India”. We will be celebrating ICCD at all our 51 centers as well as those of our partners, across India. 

Childhood Cancer is the low hanging fruit for a country’s cancer control program. In 2015 Cankids…KidsCan Launched The Go Gold India- Survivor Led Advocacy Campaign with 8 demands – To make Childhood Cancer Child Health Priority in India- a clear childhood cancer control plan and policy, more and dedicated pediatric oncology cancer centers, better and qualified manpower and health professionals, affordable but quality treatment and drugs, focused interventions for specific childhood cancers that are highly curable like Hodgkins Lymphoma, Retinoblastoma (eye cancer) and Wilms Tumor (kidney cancer), acceptance of the age of childhood cancer upto 18 years of age, and family and civil society engagement. 

Supporting Childhood Cancer Treatment in Punjab - Government of Punjab joins other Stakeholders

Childhood cancer almost never figures on the government radar. And we all realize that this is a critical component if we have to have real success in true control of childhood cancers in India. Individuals and organisations – where from the healthcare sector or the non-governmental sector can only do so much.

Over the last couple of years, Cankids has been actively engaging and lobbying with state governments – of Tamil Nadu and then Uttar Pradesh. Earlier this week they had a very fruitful meeting with the Punjab Government. I am sharing some news stories with you in this regard.

http://www.hindustantimes.com/punjab/cashless-cancer-treatment-for-all-below-18-punjab-health-minister/story-YeYJtKKcAbV584lwOqqneK.html

http://www.babushahi.com/full-news.php?id=63475&headline=Cashless-Cancer-treatment-for-children-at-18-empanelled-Punjab-hospitals

The Punjab government represented by the Punjab health minister Brahm Mohindra and his team joined the medical community – Dr Shruti Kakkar from DMC Ludhiana, Dr Joseph John from CMC Ludhiana, Dr Amita Mahajan from Apollo, New Delhi as well as Dr Scott Howard from World Child Cancer and International Society of Pediatric Oncology. The parent/patient support groups and civil society was represented by Cankids.

At a open meeting hosted at Government Medical College Patiala, several announcements were made including

• Extend cashless cancer treatment for the children at the 18 empanelled hospitals
• To provide tertiary health services to each and every child of state suffering from cancer
• commenced first of its kind ever special awareness programme for children suffering from cancer
• Under the Chief Minister Cancer Relief Fund scheme, cancer patients will be given Rs 1.5 lakh for treatment
• The health department is also imparting special training to medical officers, staff nurses and auxillary nursing midwives (ANMs) to conduct tests concerning cancers, especially among children and women in rural areas

Of course, this is but the first step. Continued action will lead to change and that remains to be seen.

Happy International Childhood Cancer Day

Today is International Childhood Cancer Day. It is an opportunity to focus the attention of the public, the health professionals and the government on this cause. International and national efforts are underway and you can read more about them at the following links

http://www.internationalchildhoodcancerday.org/

http://www.cankidsindia.org/iccd-2017.html

Below is a very useful infographic prepared for this occasion.

Fertility in India: Fertility information leaflets for childhood cance...

Fertility in India: Fertility information leaflets for childhood cance...: Cancer and its treatment have many side-effects, some of which may persister appear years after the treatment has finished. This is known ...

Childhood Cancer Awareness Car Rally (Gurgaon-Ajmer-Udaipur-Jaipur-Delhi)

Happy International Childhood Cancer Day

Aman Tu Mera Hero – a very special musical fundraiser featuring Kailash Kher and his band Kailasa

From Cankids

Aman Saxena, was 17 years old when he was diagnosed with Rhabdomyosarcoma, with a tumor in his throat. He wanted to play the guitar and sing and perform. Instead he battled and survived cancer at AIIMS, New Delhi, even as he became an active part of Kidscan Konnect (KCK– the teenage and young adult survivor group of Cankids), cleared his Class 12 exams and took admission in Desh Bandhu College, Delhi University. Life was looking up for Aman. He joined Jazba theatre group at DU – and at the audition proceeded to teach the group how to sing Saiyan – the right way! For yes – Aman is a huge fan of Kailash Kher. His dearest wish – to meet his hero, to sing like him. Sadly, in February 2013, Aman’s cancer returned and his fight against the disease started all over. He lost his voice, and with it his will. All the other KCK survivors rallied around him, trying to raise his spirits, encouraging him to take his treatment, building up hope. 

In September 2013, planning for a Indian Pediatric Oncology (childhood cancer) conference felicitation evening and fund raiser, we decided to theme it “Tu Mera Hero” –for Aman our hero, for the doctors who were treating him. A journalist friend suggested we needed a celebrity to promote the cause and create awareness. In 9 years of our existence, we have never been able to find one. We told him we would not chase for a Star. When the time was right he would come. 

We put Aman’s wish out there in the Universe – to meet his hero Kailash Kher. And amazingly, a Cankids advisory doctor found a way to him! He agreed to meet the cancer survivors at 6 pm of Sat 14th September but not to be part of our event later that evening. 

It was a dream come true for Aman – a meeting of joy and tears and disbelief. Kailash Kher tweeted “can’t express these kids happiness ...feeling fortunate to be with them.” An hour later, and a phone call from Kailash – and there he was on stage – with Aman and the survivors and the Jazba group – singing, most appropriately for his cancer survivor fans “tere naam se jee loonga – tere naam se mar jaoon” His message to Aman,’ “You can live each day in fear of dying, or live each moment in celebration of life.” 

The very next day, thanks to a generous donor and long time friend and supporter of Cankids, was conceived the idea of a musical evening by Kailash Kher and his band Kailasa. Said Kailash, “It is you who are my hero, Aman. I dedicate this concert to you. ” So moved was he by the young cancer survivors and children, he generously offered to waive his customary fees. 

“Aman - Tu mera Hero” – is a musical concert of heroes; of the hero within; of hope, support and motivation; of celebration of love, life and in praise of God. Of immortality. 

The concert will be held on 4th April 2014 at Thyagraj Stadium in New Delhi, on the occasion of the 13th International Childhood Cancer Day.

International Childhood Cancer Day

The 15th of Feb i.e. today is the International Childhood Cancer Day. It is an opportunity to raise awareness of children who have cancer and also to advocate for change. One of the huge challenges facing developing countries including India is timely diagnosis, referral and treatment. Lack of awareness among parents as well as health professionals hampers timely presentation. Absence of clear referral pathways further delays the diagnosis and treatment. The child and its family often stagger from hospital to hospital, city to city before hopefully reaching an appropriate treatment centre. Besides the cost and frustration for the family, a delayed presentation is often linked with advance stage at presentation, particularly in solid tumours. This adversely affects the outcome with greater treatment intensity, greater supportive care, greater costs, greater treatment toxicity, greater treatment abandonment rates and poorer outcomes.

The focus of various international (SIOP, UICC, ICCCPO) and national (Cankids...Kidscan) organisations this year is on Access to Care and as part of the access to care Campaign, early warning signs posters created jointly by SIOP/ICCCPO and the International Union for Cancer Control (UICC) have been translated into Hindi, Marathi, Bengali, Gujarati, Tamil and Malyalam by Cankids. In addition, Cankids have also released a site map of centers where children are being treated for cancer in India.

Early Warning Signs of Cancer in a Child

Treatment Centres in India