Bone marrow register 'not cost-effective'

After reading the story about UK-based Donna Zammit's quest to find a bone marrow match for her seriously ill son Jamie last Sunday week, a Maltese mother of three contacted The Sunday Times offering to help.

But the fact that Malta does not have a bone marrow register put paid to her kindness.

Mrs Zammit had urged Maltese people to ask family and friends in the UK to sign up to the bone marrow register The Anthony Nolan Trust (www.anthonynolan.org.uk) to become donors in the hope that a match could be found within the Maltese community. But the trust only registers British residents.

"This sadly means that all the Maltese (in Malta) who do want to help, not only my son, but someone else, are unable to as no registry has been set up in Malta yet," Mrs Zammit explained. "It's such a shame that so many people are offering to help my son and there is nowhere for them to go in Malta."

A Health Ministry spokesman told The Sunday Times last week that in the case of Maltese residents requiring a bone marrow match donor, doctors turned to the patient's siblings.

"The policy followed locally is to HLA type siblings when a marrow transplant is required," the spokesman explained. "Siblings have a one in four chance of being HLA compatible and it is extremely unlikely that any non-related donor will be as compatible as siblings.

"Our population is rather small and in the absence of consanguineous marriages, it is very difficult to HLA match random patients." Only one in 20,000 people is an acceptable match among non-relatives.

Human leukocyte antigens (HLA) are proteins present on the surface of cells, which play an important role in 'informing' immune cells that other cells are either foreign or 'friendly' self cells. Leukocytes are white blood cells that fight off infection or destroy foreign cells.

"No HLA typing is performed within the Health Department, and this is essential before one sets up a bone marrow register," the official pointed out. "These tests and other transplant-related tests constitute a specialised laboratory/unit related to transplantation.

"It is currently not considered cost-effective to set up such a unit locally. Currently HLA typing requests are referred abroad."

Mrs Zammit, who is married to a Maltese and has three other sons, is desperate to find a bone marrow match for Jamie, who was diagnosed with a rare blood disorder called Fanconi Anaemia at Great Ormond Street Hospital in London in April last year.

The family, who were based in Malta, moved to Bromley Common soon afterwards. The hospital is searching worldwide for a perfect match donor but the search has proved difficult. Mrs Zammit is fighting to speed up the search to save her son.

Fanconi anaemia is caused by the hereditary loss of both copies of the Fanconi anaemia gene. People with the condition (named after Swiss paediatrician Guido Fanconi, who discovered it) face an increased risk of contracting cancer and other serious illnesses. Most live until their mid-20s, and many are born with skeletal abnormalities. Carrier frequency is estimated to be around one in 300 people.

Jamie is taking steroids to keep his blood counts stable but his mother fears that the longer he continues this treatment the less likely his body is to accept transplanted bone marrow.

"If Malta had a registry, Great Ormond Street Hospital, where my son receives treatment, could have checked it last year when he was diagnosed. This would have given the hospital the chance to find a Maltese donor for him, which surely must be a better match and would have saved valuable time."

There are 45 countries on the global registry with 10.8 million donors.