'Jack is vulnerable and this vaccine is not available to him' - Mum says vulnerable children are being left out of meningitis programme
The vaccine programme is being expanded, but older children will be left out. Ailín Quinlan hears from one mother whose son remains vulnerable to meningitis
Aisling McNiffe's son Jack is 11. He doesn't speak, has a severe to profound intellectual disability, is non-verbal, takes 18 different medications a day for a variety of serious health problems, is tube-fed, in a wheelchair and needs round-the-clock care.
Jack has Down Syndrome and a string of health conditions including a rare auto-inflammatory disease, arthritis, scoliosis and hip dysplasia (misalignment of the hip joint.)
Because he has Down Syndrome, Jack has been deemed medically at risk from meningitis - the National Immunisation Advisory Committee has recommended that children with Down Syndrome receive the meningitis B vaccine to protect them against this potentially fatal disease.
However, Jack, along with any other child born after October 1 last, is not entitled to get the meningitis B vaccine under the planned expansion of the Government's Childhood Vaccine Programme which allows for the introduction of the meningitis B vaccine for new-borns.
The introduction of the vaccine to the childhood immunisation programmes means that all children with Down Syndrome born on or after October 1, 2016 will automatically receive the vaccine - but there are no plans at this stage to introduce a catch-up programme for older children like Jack.
Ireland has the highest incidence of meningitis B disease in Europe. Up to 10pc of people affected will die from the disease, and studies show that one in five are left with devastating lifelong complications, including brain damage and hearing loss.
Down Syndrome Ireland believes the availability of the vaccine to children who have been deemed medically at risk should be backdated as a matter of urgency. Although prices vary, the vaccine is reportedly difficult to source and it is expensive.
Prices range from €136 to €260 per administration, going as high as €450 for just two doses.
"All of our children are immune-compromised and we believe that in these circumstances, the backdating of the vaccine for children with Down Syndrome would be essential," declares Pat Clarke, chief executive of Down Syndrome Ireland, who adds that if the Government cannot be persuaded to backdate the availability of the vaccine, the organisation will have to consider actively lobbying for it. "The Government must find some means of enabling this to happen. Essentially, by not doing it, the Government is putting the lives of children with Down Syndrome at risk.
"We are hoping to persuade the Government of the importance of this, and if it does not happen we would have to consider a lobbying campaign to ensure the Government will change its mind."
Jack, however, is even more at risk than other children with Down Syndrome, says Aisling McNiffe - he also has CINCA (Chronic Infantile Neurological Cutaneous Articular Syndrome), a rare auto-inflammatory and degenerative disease.
In fact, says his mother Aisling, he is the only case known worldwide with both Down Syndrome and CINCA (also known as Nomid) syndrome.
At the time of his birth, Aisling recalls, Jack was believed to be the first case in Ireland with CINCA.
He is immune-deficient and, furthermore, on medication which suppresses the immune system, warns his worried mother.
"According to the National Immunisation Advisory Committee Guidelines, Jack should get the vaccine," she says, adding that she has contacted the HSE and written to the Minister for Health.
"I feel if something is advised, it should be freely given. I cannot afford to buy the vaccine privately but I feel I will have to do it," says the 43-year-old former flight attendant, who is now a separated mother-of-two and a full-time carer for Jack at the family home in Ardclough, Co Kildare.
CINCA brings with it a variety of health problems - Jack, who spent the first three years of life in Our Lady's Children's Hospital in Crumlin, gets strong headaches, is extremely light-sensitive and nose-sensitive, suffers from arthritis, frequent temperatures, skin rashes and abdominal cramps.
"If you have Down Syndrome you are immune-compromised but on top of that, Jack has CINCA so he is also having high doses of medication," says Aisling, who also has a 12-year-old daughter, Molly.
As part of Jack's Down Syndrome he has congenital heart disease. He had closed heart surgery at six weeks and open heart surgery at 10 weeks, and will require further surgery.
His mother adds that he has chronic lung disease and was on oxygen for more than three years. Jack, who now attends a special school, also has low muscle tone and gets frequent chest infections.
"He is on 18 different medications, which means he is immune-suppressed.
"I really want him to get this vaccine. He is in a wheelchair and is tube-fed 24 hours of the day so he is vulnerable. The vaccine is not available to him and it definitely should be," says Aisling.
"It would be a great weight off my mind for him to be given this vaccine.
"I feel I am speaking out for the whole special needs community when I say that if something is recommended, it should be given," she adds.
It makes sense to backdate the vaccine, argues Dr Ronan Leahy, consultant in Paediatric Immunology at Our Lady's Children's Hospital in Crumlin and the Children's University Hospital in Temple Street - and not just for children with Down Syndrome, but also for other children with immune deficiencies that leave them prone to meningitis B.
"We know there are older children who are quite vulnerable to meningococcal disease and they should be getting the vaccine.
"It is only sensible to include them in the vaccination programme. It would be good value for money as they would be less likely to present with the disease as a result of having it."
World Meningitis Day is on April 24. The theme for this year's event is '24 Hours - Trust Your Instincts'. For more information, visit meningitis.org.