London: Raising organ donation awareness and support within the Indian Hindu and Jain communities is an essential task put to community leaders in the House of Commons this week. Lord Jitesh Gadhia and Jackie Doyle, Price MP, Health Minister and Lead for NHS Blood and Transplant, including Organ Donation hosted the thought-provoking event. Kirit Modi, kidney transplant recipient (from his wife Meena), life vice-president of the National Kidney Federation and Hon President the National of Black, Asian and Minority Ethnic Transplant Alliance, began with some startling facts and figures.
In March this year, 959 Asians in UK were waiting for an organ transplant; over 80% waiting for an organ transplant are waiting for a kidney. All Asians are grouped together; there is no more specific data available and no data is collected by religion, yet. There were 69 Asians who donated a living kidney, which is 7% of living kidney donations; and 37 Asians who donated organs after death, 2% of all after death donations. 726 individuals from an Indian background signed the national Organ Donor Register (ODR) to indicate their decision to donate their organs after death. People from an Indian background had the highest rate of sign-ups to the ODR, representing 1.9% of all those signing the register (census data shows 2.3% of the overall population is of Indian background).
The average waiting time for an organ transplant for white people is 2 years, but 2.5 years for Asians, highlighting the stark concerns within particular communities about the need for more donors and an ethnicity match. 89 people from a BAME background died while waiting for an organ transplant, that is 21% of all those who died while waiting. The percentage of family members who consent to the giving of organ donation of a loved one after death at the critical time in hospital, in 2017-2018 was 66% nationally and less for BAME communities at 42%. Public opinion on organ donation is positive, with 80% saying that they would be willing or would consider organ donation. Again, this figure reduces to 69% for BAME communities.
In 2020, UK government plans to follow the lead from Spain and Belgium, who top the organ donation tables, by introducing presumed consent with an opt-out option; if someone dies and they have not recorded an express decision, the default decision will be that consent to donate will be “deemed”, the reverse of the present policy. The government has made available £115K for England and £20K for Wales in 2018-19, under a “community investment scheme” for local Hindu, Sikh and Jain community organisations to engage their communities in organ donation. Local groups are preferred to large national charities, which may not have effective links with local communities; bids are to be submitted by 24 September 2018.
Doyle-Price is introducing a new app, whereby individuals can manage their organ donations issues and record their data, including religion. Presently faith is not specified on the donor card. Kirit Modi requested the minister to involve representatives of Hindu, Sikh and Jain communities in the development of new faith specific donor cards, largely because there was poor attendance from these communities at the faith meeting on organ donation organised by the Department Of Health in May 2018.
Doyle Price referred to the soap opera Coronation Street’s positive effect in bringing organ donation into the mainstream during March; with an audience of 6-9 million viewers, the kidney disease and transplantation storyline brought the topic into the mainstream. Organ donation is not a typical subject discussed in Indian families, particularly between children and their parents. The donors and recipient experiences at the event made compelling examples of why understanding is necessary.
The parties present including Prof Sejal Saglani, BAPS Swaminarayan Sanstha (Neasden Hindu Temple); Chirag Bajaria, Executive Committee Member, Vanik Council UK; Urmila Banerjee, Chair of NHS Blood and Transplant. All agreed community education, family conversations and social media were key to raising awareness; the suggestion of educational videos in different languages was applauded.
Dharmic religions with their altruistic tradition of sewa are perfectly disposed towards organ donation. What greater gift can an individual give than the gift of life to another? Sewa Day in UK on 14 October will be focused on blood, organ and stem cell donation.
Jay and Sina Patel then shared their heart wrenching story about donating seven organs from their son Aari, 3 years, after an accident. Their account was the most watched NHS video in 2017. After they knew Aari was not going to survive, Sina said it was a quick and painless decision as another mother and another child were in need and Aari helped.
The meeting concluded with a reminder that living donations give the best outcomes and the after-death donation awareness drive should not diminish living donation impetus.