Tuesday, 10 March 2020

Podcast on perspectives of caregivers of children with cancer in India on their journey to accessing timely cancer diagnosis and treatment

I am glad to share a podcast https://www.ghccpod.com/22-the-labyrinth/ was conducted by Dr Mark Zobeck based on one our recent pieces of work in trying to understand the experiences of the caregivers of children with cancer in India as they obtain their diagnosis and start treatment.

I quote from his link

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. 

Friday, 20 December 2019

WHO Global Initiative for Childhood Cancer

In September 2018 WHO announced a new effort – the WHO Global Initiative on Childhood Cancer – with the aim of reaching at least a 60% survival rate for children with cancer by 2030, thereby saving an additional one million lives. 

This new target represents a doubling of the global cure rate for children with cancer. The aims of the Initiative are two-fold: to increase prioritization of childhood cancer through awareness raising at global and national levels and to expand the capacity of countries to deliver best practice in childhood cancer care. Concretely, WHO will support governments to assess current capacities in cancer diagnosis and treatment including the availability of medicines and technologies; set and cost priority cancer diagnosis and treatment programs; and integrate childhood cancer into national strategies, health benefits packages and social insurance schemes.

More information can be found at the following links

Monday, 11 June 2018

Umbilical Cord Blood Banking in India - A Complete Rip-Off

Why is Umbilical Cord Blood Important?

The blood in the umbilical cord us a source of STEM CELLS. These are special cells which have the ability to grow and develop into many different cell types in the body. They are thus of use in many diseases including cancer.

Then should one not store their umbilical cord blood?

The answer to this is Yes and No. The idea to store umbilical cord blood is a good one. The problem is that those who are storing and paying for storing it are being misled. They are assuming that this umbilical cord blood would be of use to them in the future. This is far from true. The chance that the umbilical cord blood stem cells would be used by those who donated them is 1 in 1000 to 1 in 200,000.

So who is misleading us?

We are being misled by false advertising and marketing of companies who bank umbilical cord blood as a for-profit private enterprise i.e. PRIVATE CORD BLOOD BANKING. We are being misled by the celebrities who endorse this practice. We are being misled by those doctors who promote this practice.

So is all umbilical cord blood banking bad?

No, banking umbilical cord blood in PUBLIC CORD BLOOD BANKS is good and is likely to be of much more use. Please see below a list of public sector cord blood banks.

Where can I get further information?

Also, if you want more detailed information on this from an unbiased source, please click on this link which is the Indian Academy of Pediatrics position statement on umbilical cord blood banking