Global Health & Childhood Cancer

WHAT DO YOU DO IF YOU DON’T HAVE ENOUGH MONEY TO PAY FOR YOUR CHILD’S CANCER TREATMENT? This is one of the difficult questions faced by some families in India today. Answering this question is one of the reasons Aroh, a non-profit that supports families with children enduring cancer treatment [https://www.arohonline.org/], was founded. Today on the podcast we will speak with Bindu Nair, the founder and managing trustee of Aroh, about her experience running a non-profit organization designed to support families navigating the many trials that cancer brings. We know that childhood cancer is a very complex disease to treat. Curing patients and caring for families requires much more than a doctor and some medicine. It requires an entire community of people with many different skills working together. Non-profit or non-governmental organizations (NGOs) are a vital part of that community. Many of them provide care for families in ways the medical system cannot or does not. Aroh is one such organization. They focus on sustaining the child through treatment through medical, financial, nutrition, psycho-social and educational support. The organization is situated in the south of India, working for children with cancer in Tamil Nadu, Kerala, Karnataka, and Andhra Pradesh. I encourage you to listen to this episode, and maybe, if you’re blessed to be in a good financial position, consider donating. For more information about Aroh, visit their website at https://www.arohonline.org/ [https://www.arohonline.org/] and consider what you could do to improve the life of a child with cancer today! About Bindu Nair Ms. Bindu N Nair is from Kerala, India and she started her journey in Social Work with Make-a-Wish India Foundation in 2003. It’s an international Foundation based in United States which works for granting wishes of children with life-threatening diseases. Ms.Bindu started Make-A-Wish India in Coimbatore.  She worked with the organisation for 10 years till 2013. During her interaction with children in different hospitals in the city, she understood that there are no NGOs working in the Childhood Cancer sector. She decided to do something about it and started Aroh-Givng Hope in 2013 with two of her like-minded friends. It is a registered Trust with both 12A and 80G registration. Aroh is also registered in US and has 501 © 3 registration. It is an NGO for children with Cancer and their families.  Aroh is a member of SIOP and CCI. Ms.Bindu is part of the Regional Committee of CCI Asia. Aroh works with more than 40 hospitals all across South India, taking care of more than 1000 children and their families. The NGO offers Medical assistance, food and nutrition, Palliative Care, PsychoSocial support and Education to cancer kids. Aroh regularly conducts events for the children and also arranges awareness programmes. Aroh staff and volunteers address school and college students and spread awareness about Childhood Cancer.

How does a child with cancer in India access care? If you’ve ever had an illness that was difficult to diagnose, you know that navigating the medical system can be incredibly frustrating. Bouncing back and forth between doctors, taking time off of work or school, waiting for hours upon hours, all while you don’t feel well and do not know what is going on with your body is enough to drive anyone crazy. Unfortunately for families of children with cancer, they know this feeling all too well. Childhood cancer can be very difficult to diagnose and the journeys that families undergo to find answers and receive care can be long and grueling. To better understand these journeys, Drs. Neha Faruqui, Ramandeep Arora, and their colleagues have studied what they call the “healthcare labyrinth” of accessing childhood cancer care in India. Through discussions with parents and caregivers, they classified the major themes that contribute to difficult or prolonged paths to care. Today on the podcast, we will discuss their findings from their many hours of listening to the families’ stories. I would encourage anyone listening to the podcast to also read their paper. As I say in the podcast, it reads more like a novel than a journal article, and I found myself emotionally invested in the way the parents described their journeys. It made me appreciate anew how important it is to establish robust health systems that can rapidly identify patients and refer them to appropriate tertiary care. Lastly, this discussion is not meant to be a criticism of the Indian healthcare system. It is an enormous system that is responsible for caring for 1.3 billion people! There are many things it does very well! But of course, there are things that can be improved. As Dr. Arora says in the episode, this paper, and our discussion is about listening to the caretakers to discover how providers everywhere can better care for not only the patient during treatment but for the entire family through the entire cancer experience. Read the full study here:https://bmcpublichealth.biomedcentral.com/articles/10.1186/s12889-019-7911-x [https://bmcpublichealth.biomedcentral.com/articles/10.1186/s12889-019-7911-x] Dr. Neha Faruqui: Neha Faruqui recently completed her Ph.D. from the University of Sydney focusing on access to care for children with cancer in India and the implications for Universal Health Coverage. Her previous work experience included public health projects at the Indian Government level and at the grassroots level with NGOs. Neha’s interests lie in health systems research, non-communicable disease research, and health policy and planning. She also tutors the Masters of Global Health students at the University of Sydney on various subjects. Dr. Ramandeep Singh Arora Senior Consultant, Paediatric Oncology, Max Super Speciality Hospital, New Delhi Honorary Head, Quality Care, Research and Impact Analysis, Cankids India, New Delhi Secretary, Indian Pediatric Oncology Group (InPOG) Blog – http://childhoodcancerindia.blogspot.com [http://childhoodcancerindia.blogspot.com/] Find out more about our sponsor! Please visit Resonance atwww.amplifyinghealth.com [https://www.ghccpod.com/20-collaborating-in-africa-to-cure-wilms-tumor-with-dr-trijn-israels-and-dr-festus-njuguna/www.amplifyinghealth.com]

How should healthcare workers caring for immunocompromised patients think about the coronavirus epidemic? The novel coronavirus, now called COVID-19, is a worrisome disease, particularly for healthcare workers caring for immunocompromised patients. What do providers taking care of kids with cancer or other vulnerable patients need to know?. In this episode, I interviewed one of the world’s foremost infectious disease specialists who is currently working to develop a vaccine for COVID-19. Dr. Peter Hotez, M.D., Ph.D. [https://www.bcm.edu/people/view/peter-hotez-m-d-ph-d/b1846a47-ffed-11e2-be68-080027880ca6] is a pediatrician-scientist with more than 20 years of experience developing vaccines for neglected tropical diseases. He’s also the Dean for the National School of Tropical Medicine at the Baylor College of Medicine in Houston, Texas. He’s the endowed Chair in Tropical Pediatrics at Texas Children’s Hospital and Co-Director of Texas Children’s Hospital Center for Vaccine Development. For more information about Dr. Peter Hotez, M.D., Ph.D., click this link [https://www.bcm.edu/people/view/peter-hotez-m-d-ph-d/b1846a47-ffed-11e2-be68-080027880ca6]. This is very much a crossover episode. It is primarily about the virus and the global health community’s ability to address it. But it is also about pediatric cancer as 1) our patients are more vulnerable to infections and 2) most pediatric cancer patients live in countries with public health systems that may struggle to contain the virus. Given these concerns, it is important that healthcare providers stay aware of the situation. So in this episode, we will discuss what is known about the virus and how to develop a vaccine for it with one of the world’s most respected global health experts in vaccine development. We’ll hear how he views the emerging disease, his thoughts about the timeline for a working vaccine, and how the global health community can win the battle against this potential pandemic. Recent news articles featuring Dr. Hotez: https://www.foxnews.com/opinion/a-tale-of-3-nations-peter-hotez [https://www.foxnews.com/opinion/a-tale-of-3-nations-peter-hotez] https://www.youtube.com/watch?v=1ILrCQp0f8Q [https://www.youtube.com/watch?v=1ILrCQp0f8Q] https://www.nytimes.com/aponline/2020/02/06/health/ap-us-med-china-outbreak-vaccines.html [https://www.nytimes.com/aponline/2020/02/06/health/ap-us-med-china-outbreak-vaccines.html] https://khn.org/news/facts-vs-fears-five-things-to-help-weigh-your-coronavirus-risk/ [https://khn.org/news/facts-vs-fears-five-things-to-help-weigh-your-coronavirus-risk/] What do we know about COVID-19? The 2019 novel coronavirus or “COVID-19” as the World Health Organization now calls it, is an epidemic that is currently affecting much of China and Southeast Asia and could become a pandemic that causes active disease on all the continents. As of when we published this episode, there are at least 1,600 mortality cases recorded and the virus has infected more than 69,000 people worldwide. The US Centers for Disease Control and Prevention believes that the virus will continue to spread globally across countries and even in the US. Though we know that a lot of coronavirus strains are common like the ones causing mild upper-respiratory tract illnesses such as common colds, this one has the ability to cause a severe, even fatal, respiratory disease. What are the signs and symptoms and how can we protect ourselves? Some of the COVID-19 signs and symptoms can range from fever, cough, runny nose, sore throat and difficulty in breathing. It can also easily affect people who have compromised immune systems such as those with diabetes, heart and lung problems and especially the elderly and immunocompromised individuals. You may ask yourself, how can we avoid this disease? How can an individual protect itself from the virus? Well, just like how you protect yourself during flu season, you can do the same with coronavirus. These measures include: * Avoiding any close contact with people who are sick. * Avoid touching your eyes, nose, and mouth. * Stay home when you are sick and avoid close interaction with family members. * Cover your mouth when you cough using a tissue or sneeze with a tissue, then throw the tissue immediately in the trash. * Make it a habit to always clean and disinfect frequently touched objects and surfaces using a regular household cleaning sprays or wipes. * Keep up to date on the latest news about the virus in your area You can find more information in the links below. https://www.cdc.gov/coronavirus/2019-ncov/about/prevention-treatment.html [https://www.cdc.gov/coronavirus/2019-ncov/about/prevention-treatment.html] https://www.cdc.gov/coronavirus/2019-ncov/index.html [https://www.cdc.gov/coronavirus/2019-ncov/index.html] https://www.cdc.gov/coronavirus/2019-ncov/faq.html [https://www.cdc.gov/coronavirus/2019-ncov/faq.html] https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(20)30183-5/fulltext [https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(20)30183-5/fulltext] https://www.globalhealthnow.org/2020-02/coronavirus-expert-reality-check#hotez [https://www.globalhealthnow.org/2020-02/coronavirus-expert-reality-check#hotez] https://edition.cnn.com/2020/02/16/health/coronavirus-how-to-protect-yourself-trnd/index.html [https://edition.cnn.com/2020/02/16/health/coronavirus-how-to-protect-yourself-trnd/index.html] Elseviercoronavirus information center: https://www.elsevier.com/connect/coronavirus-information-center [https://www.elsevier.com/connect/coronavirus-information-center] up-to-date coronavirus information center: https://www.uptodate.com/contents/coronavirus-disease-2019-covid-19#H1466934285 [https://www.uptodate.com/contents/coronavirus-disease-2019-covid-19#H1466934285] To learn more about our Sponsor,visit Resonance athttp://amplifyinghealth.com/ [http://amplifyinghealth.com/]

In the United States, 500-600 children are diagnosed with Wilms tumor annually. The disease accounts for about 5% of all childhood cancers and is the most common kind of kidney cancer in children. In high-income countries like the United States, the 5-year survival rate for low-grade Wilms tumor is around 90%, which means it is widely perceived as a “curable” tumor. Unfortunately, “curable” is not a concept that crosses international boundaries. In low- and middle-income countries, like many in Africa, the survival rate can be very, very low. So how do we improve cure rates for a treatable tumor? In this episode, Dr. Festus Njuguna and Dr. Trjn Israels discuss their collaborative multi-center Wilms tumor project that aims to increase the survival rate and decrease treatment abandonment of pediatric Wilms tumor patients in Africa. This collaborative brings together medical providers from treatment centers in Malawi, Ghana, Kenya, Cameroon,  and Zimbabwe to discuss how to implement the SIOP PODC Adapted Treatment Guidelines for Wilms Tumor at each center. Their results, so far, have been impressive. After 4 years of the collaborative, survival has risen from 52% to 69% and treatment abandonment has decreased from 23% to 12%! The project is now aiming to further reduce treatment abandonment and reduce death during treatment by improving support care. One of the important things this project needs is financial support.  If you are interested, you can reach out to Dr. Njuguna or Dr. Israels for more information on how you can help to improve the lives of pediatric Wilms tumor patients in Africa. Details are posted below. Dr. Trjn Israels :t.israels-3@prinsesmaximacentrum.nl [t.israels-3@prinsesmaximacentrum.nl] Dr. Festus Njuguna:muigaifes2000@yahoo.com [muigaifes2000@yahoo.com] The Collaborative Wilms Tumour Project:https://siop-online.org/collaborative-wilms-tumour-africa-project/ [https://siop-online.org/collaborative-wilms-tumour-africa-project/] Learn more about Wilms Tumour Project here: https://www.worldchildcancer.us/what-we-do/where-we-work/wilms-tumor-africa-collaboration [https://www.worldchildcancer.us/what-we-do/where-we-work/wilms-tumor-africa-collaboration] Read their recent paper highlighting their results here: https://onlinelibrary.wiley.com/doi/abs/10.1002/pbc.26945 [https://onlinelibrary.wiley.com/doi/abs/10.1002/pbc.26945] Find out more about our sponsor! Please visitwww.amplifyinghealth.com [www.amplifyinghealth.com]

HOW MANY HEALTHCARE PROFESSIONALS IN THE WORLD ARE CARING FOR CHILDREN WITH CANCER? Tap the link for more info: https://siop-online.org/globalmapping/ [https://siop-online.org/globalmapping/] This is a very important question. How many people are caring for kids with cancer around the world? Where are they located? What regions have few or no doctors available? For a child with cancer, the answers to these question can be the difference between receiving life saving treatment or no treatment at all. Until now, there has been no systematic assessment of the global services available to childhood cancer patients. Dr. Jennifer Geel and a dedicated team of SIOP members are now trying to change that through their project called the SIOP Global Mapping Project. Their goal is to create a global map that displays the available resources for childhood cancer treatment such as cancer treatment facilities, medical professionals that care for pediatric oncology patients, and other services that can improve the kid’s lives.For the last year, they have been surveying providers in Africa to find out what services are available and where they are located. As you will hear, this is an enormous undertaking, but they have already produced some striking results. The primary focus of the project is on low- and middle-income countries. It follows a systematic needs assessment framework as outlined in the study “A framework to develop adapted treatment regimens to manage pediatric cancer in low- and middle-income countries: The Pediatric Oncology in Developing Countries (PODC) Committee of the International Pediatric Oncology Society (SIOP) [https://onlinelibrary.wiley.com/doi/full/10.1002/pbc.26879].”After starting in Africa,the project is now  shifting its focus toward Latin America. Are a healthcare provider caring for children with cancer in Africa or Latin America (or really any low- or middle-income countries!)? Then you can help by filling out the survey form? Every new bit of information brings us one step closer to to ensuring that every child has a chance for a cure! Go to the survey:https://siop-online.org/globalmapping/ [https://siop-online.org/globalmapping/] Take part in our project and follow us! Facebook: https://www.facebook.com/cancerPOINTE/ [https://emea01.safelinks.protection.outlook.com/?url=https%3A%2F%2Fwww.facebook.com%2FcancerPOINTE%2F&data=01%7C01%7Cswollaert%40kenes.com%7C3ed75fd7e9174b0a4af008d3f46bff4d%7C3d30e618d92c4b12be882d9347423783%7C1&sdata=WCElzdZfhtQEepQ72zj6ng7I%2F%2BT%2BYmhUeetSQPmmBAE%3D&reserved=0] Twitter: @GHCCpod [https://twitter.com/GHCCpod],@CancerPOINTE [https://twitter.com/cancerpointe] Instagram: https://www.instagram.com/cancerpointe/ [https://www.instagram.com/cancerpointe/] LinkedIn: https://www.linkedin.com/company/pediatric-oncology-international-network-for-training-and-education-pointe- [https://emea01.safelinks.protection.outlook.com/?url=https%3A%2F%2Fwww.linkedin.com%2Fcompany%2Fpediatric-oncology-international-network-for-training-and-education-pointe-&data=01%7C01%7Cswollaert%40kenes.com%7C3ed75fd7e9174b0a4af008d3f46bff4d%7C3d30e618d92c4b12be882d9347423783%7C1&sdata=6vfvcBeucdC%2FRUgyrro9gCvSqe7WXcPwD5zelHCc7XY%3D&reserved=0]