FoL Background

In November 1999, Darpana Kumar, a 3 year old Asian girl, who is also my niece, was diagnosed with a very rare form of leukaemia – JMML (Juvenile myelo-monocytic leukaemia).We were told that she had little or no chance of surviving. The whole family was devastated by this news. Darpana was initially being treated at the local hospital in Slough but due to her deteriorating situation she was moved to a specialised unit at the Great Ormond Street hospital for sick children.

Four months later, in March 2000, a fact was revealed to us. Darpana required a bone marrow transplant and only a 100% bone marrow match would suffice due to the stage of her illness and the rare form of leukaemia that she had contracted. Even if a perfect match was found, there would only be a 25% rate of success. However, the fact that a match was only likely to come from either a family member or someone from the same ethnic group was disturbing because firstly Darpana has no natural brothers or sisters. She is the only child. Secondly, to complicate matters, her same ethnic group was largely unaware of the problem.

The chances of finding a suitable donor for Darpana were very small. The medical statistics suggested that there is typically a 1 in 100,000 chance of finding a good bone marrow match from donors within any racial group. With only 4,000 South Asian donors on the largest bone marrow register in the UK (The Anthony Nolan Bone Marrow Trust) and no more than 50,000 South Asian donors world wide (mainly on the National Marrow Donor Programme – NMDP – of the USA) her chances of finding a match were 0.5. Not even 1 whole chance of finding a suitable bone marrow match existed for Darpana or other Asian children in her position.

With respect to the Caucasian community, the picture was not so gloomy. Of the just over 6.5 million bone marrow/stem cell donors world wide, almost 6 million were Caucasians. Hence, each Caucasian sufferer had some 60 chances of finding a match compared to a 0.5 chance for a South Asian patient. With 1 in 5 people who walk this globe being of South Asian background, this was a shameful and horrendously low figure. Consequently, a South Asian sufferer of leukaemia or other related blood disorder is 120 times worse off than a Caucasian sufferer if they require a bone marrow transplant as their last or best chance of survival. A South Asian sufferer in the UK can not rely upon an adequate health support structure to find him/her a life-saving donor as no such pro-active system exists.

Hence, Friends of Life was born. To strive for equality in healthcare systems and to raise the profile of leukaemia and other diseases so that more can be done to make our communities aware that only they alone can safeguard themselves and more importantly, their future generations from this dreadful but treatable disease. Our common blood genetics bind us inextricably into one large global family and not to do anything about it is suicidal. This disease can affect anyone at any time. It is not hereditary.

By Ajay Kumar – Uncle of Darpana and Founder & Chairperson of Friends of Life.

The FoL Campaign &Darpana’s Story

It all began in March 2000, when Ajay Kumar, the uncle of Darpana Kumar decided to highlight the plight of his niece to the world and to explain the shocking facts that he had discovered about the systems in place and the huge imbalances that existed in the number of donors from all ethnic groups.

He felt strongly that the systems and procedures in place were conspicuous by their absence. More concerted and genuine plans were required to awaken the communities so that they realised the importance of becoming a life-saving donor. A culturally, religiously, and linguistically sensitive approach was missing and previous attempts were not successful.

Initially, as a one-man band Ajay appeared on mainstream and ethnic media channels to appeal to the communities to come forward as time was running out for the little toddler. Darpana’s mum also appeared on GMTV to appeal. After several TV, radio and newspaper interviews Ajay decided to formalise his campaign and soon estab-lished a formal committee of ‘Friends of Life’, a voluntary pressure group.

‘Friends of Life’(FoL) launched from the Town Hall Chambers in Slough on the 6th of June 2000, at an emotionally charged event. The media, public, official bodies representing the National Blood Service, the British Bone Marrow Donor Registry and the Anthony Nolan Trust as well as other local and national organisations were present. An appeal was made for all to come forward and aid FoL in their struggle for little Darpana and others. The aim was to hold a series of clinics all across the country in a desperate attempt to find that donor.

Unfortunately, due to limited resources in the main FoL agreed to work with the only group that could accommodate instant recruitment – the Anthony Nolan Bone Marrow Trust (ANBMT). A meeting was held with senior management and ANBMT agreed to supply a maximum of 1500 medical kits to take blood over the next 6 weeks.

FoL had to recruit their own team of volunteer doctors, nurses, and phlebotamists to take blood as well as administrators and volunteers to organise and run the medical camps. A series of clinics were organised across the local regions and to everyone’s amazement FoL recruited 1500 South Asian donors onto the ANBMT register.

Hence, In just under two months, and locally in the main, ‘Friends of Life’ single-handedly increased the numbers of Asians registered with ANBMT by over one third. In comparison, the ANBMT had only managed to recruit 4,000 donors in over two decades of existence. This was a huge achievement but the fact was that although there were now 5,500 Asian donors, no bone marrow match was found for Darpana.

FoL was always aware that finding a donor was like finding a needle in a haystack but the effort was needed to demonstrate that the community was prepared to move and if not Darpana, hopefully someone would benefit in the future. The idea was to start the process of active recruitment, education and raising awareness of leukaemia within the South Asian communities. Furthermore, although it was realised that there is typically a 1 in 100,000 chance of finding a suitable match, however, that next person who walks into a clinic could be that vital lifeline for a sufferer. It was this hope that drove the FoL campaign.

‘Friends of Life’ conclusively proved that the South Asian communities in the UK do want to come forward and become donors but they need to be made aware of the issues at ‘grassroots’ level. Thousands of people rang in to volunteer themselves as donors as a result of the six-week plea on Zee TV. The up-take amongst the young community was the greatest. The phone lines at FoL were constantly jammed and over 3000 calls were received and recorded. Due to our limited resources (staffing, phone lines etc.) thousands of callers were unable to get through. A change in attitude is required both from within the communities and by the existing bodies that we must do something positive to change the status quo.

Due to the realistically small chance of a suitable match being found, Ajay was constantly engaged in dialogue with Darpana’s doctors as well as other doctors both in the UK and internationally to try and find an alternative to the bone marrow transplant. This was the last option as described by the doctors at Great Ormond Street hospital and one that had very little chance of success (typically 20-25%) even if a 100% matching donor was found.

The stem cell transplant was an alternative that had some success especially in countries like the USA, Germany and Israel. It was decided to adopt this unique procedure in Darpana’s case and in August 2000, Darpana received a stem cell transplant by collecting stem cells from her mother who was genetically a 50% match only. A unique procedure called PBSC (Peripheral blood stem cell) collection was used to extract the stem cells from the mum’s arm as opposed to taking marrow from the back. This procedure had not then but has now been adopted by organisations such as ANBMT to collect cells but it is believed that this practice will be adopted soon. Darpana was one of the first to receive this transplant on the very rare form of JMML leukaemia that she had.