A waste of money to treat childhood cancer. Really?

2017

written in consultation with Dr Krishna Sagar Sharma, BP Memorial Cancer Hospital, Chitwan. Nepal

February 4 is World Cancer Day. We learned in a Himalaya Times (Kathmandu)¹  that cancer treatment has only been available in Nepal for 22 years. It put into some context a conversation we had earlier in that week with Dr Krishna Sagar Sharma at the BP Koirala Memorial Cancer Hospital, Chitwan, Nepal. Dr Sharma established the Paediatric Cancer Ward there in 2007 after struggle with management of almost one year.

 

Krishna Sagar Sharma with Anne and Alex (jyoti) in Chitwan, Nepal

Krishna Sagar Sharma with Anne and Alex (Jyoti) in Chitwan, Nepal

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The hospital is the only comprehensive Cancer Center of Government of Nepal with an appointed pediatrician appointed; however it did not recognition as a speciality, not an independent Out-Patient Department or beds allocated for children.

He told us an extraordinary story of the difficulties he encountered in establishing a ward at the hospital specifically for treating children with cancer. He ran headlong into the prevailing view that it was a waste of time, and resources, to treat children with cancer as most are ‘going to die anyway’. Vast numbers of children throughout Nepal are affected by diseases, such as infections, and many die. People believe that cancer treatment is very expensive and unlikely to be successful, and that the resources should be placed where they are likely to have a better outcome.

It was a sobering meeting with Dr Sharma. It was difficult for us to grasp all the impediments he faced because, in our experience, children’s cancer receives a lot of public compassion, and is seen as a high priority in the health system.

We learned that in addition to families having to pay for the treatment, they also have to meet many other costs, including food. Many travel from far away, leaving other family members behind. The costs – both financially and emotionally – are great. We heard about unscrupulous clinicians who took most of the family savings before referring patients on to cancer centres, thus leaving them with no money for follow-up treatments, such as chemotherapy and radiotherapy. There is now a case management system in place where Dr Sharma can guide the parents through the treatment processes which avoids this additional pain.

We heard about families coming from remote areas for the initial treatment, going home afterwards, then not coming back, either because of cost or not understanding that further treatment was required.

Until very recently, many cancers were only diagnosed when they are too advanced to treat. CT and MRI scans have only just become part of the diagnostic process and are available in very few places throughout Nepal.

However, in the face of all this, Dr Sharma persisted and was finally allocated a small ward with a few beds. Gradually children were successfully treated for leukaemia, lymphoma, GCT, RMS, and other childhood cancers; the hospital management could see that treatment is worthwhile and more and more people sought help. They have yet to have similar success with sarcomas and brain cancers.

The staff has increased and there is one other pediatrician and two medical officers (UG), a doctor is on staff as well as a team of very dedicated nurses, although none are specifically trained in paediatric oncology. He has asked for more pediatricians in order to provide a better service however, management do not yet see this as a priority.

There are now palliative care beds for children who cannot go for curative treatment or who are diagnosed in advanced stage. The next real need to meet is for an Intensive Care Unit and a transplant facility treatment for children.

Unfortunately, management cannot yet provide a Pheresis service for cancer patients. Some patients died due to lack of Platelets.
 However, more than 100 children are cured each year of both ALL and AML leukemias.

Nonetheless, there are not enough facilities to meet the needs. They are in dire need of beds, bedside monitors, air conditioning in the ward and infusion pumps. It is particularly hard to accept given that other departments in hospital are better equipped and have a/c. and Dr Sharma’s has made many strong requests to the management to remedy this situation.
 He gave us an example of one child who died during winter while receiving chemotherapy because of the lack of heating. The temperature had plummeted to 4-5 degrees. In summer the temperatures can reach 40 degrees.

We suggested he contact some of the major cancer treatment hospitals in Australia – such as Peter Mac, the Austin Hospital/ONJ Centre in Melbourne and The Chris Obrien Cancer Hospital in Sydney– and tell them what he needs. Ask. There may be people there who may be willing to come for a short time and train staff, or host staff from Nepal and train them. There is so much expertise – and in our experience, people like to share their skills and help other people.

In light of all this, we were forced to ask ourselves : where is the place of the artist in all this, when so many of the basics have yet to be covered. Are we serving any purpose here?

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The answer is yes. Cancer treatment is one part of the equation, the human connection is another part. The relationships between the staff and the children, parents and the children, parents and staff, the expression of meaning, grief, joy; leading a worthwhile life – regardless of the time available, are an important pursuits. Dr Sharma understands this too.

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He welcomed us to the hospital and recognised in us a range of expertise and skills that can add to the quality of life of the children, as well as their parents; we also discussed the potential to train and involve  more staff in engaging in the psycho-social needs of the whole family. We are planning to return at the same time next year to help develop a program that attends to these needs.

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1 “ In Nepal, more than 100,000 cancer patient have been recorded after treatment became available 22 years ago,” said Lokendra Kumar Shrestha, chairman at the Nepal Cancer Relief Society, Bhaktapur Cancer Hospital. Himalaya Times,    Himalaya Times, 5 February 2017

 

 

 

This program was part of Artists in Community International’s 2017 project MAKE DO TELL.   It was made possible through the financial support of our donors.  We rely on these donations for the project – please consider pledging your support – perhaps a monthly contribution?  and donating here: DONATE.    Thank you!

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