Press Release 22/01/2019

     

Congenital CMV costs the UK £750m a year

A new report from national charity CMV Action outlines how congenital CMV, a virus that causes stillbirth, miscarriage and serious lifelong health issues in babies, costs the UK £750m a year.

Evidence shows the numbers of babies born with this infection could be reduced if preventative advice is given. Yet CMV is rarely discussed in routine antenatal care and pregnant women are still not being warned on how to avoid catching the infection that is commonly spread through close contact with infected bodily fluids.

The majority of the cost burden comes from babies born with congenital CMV, who go on to develop severe health conditions, often requiring support from over 20 different health professionals and specialist education costing hundreds of thousands of pounds a year.

Currently 1,000 babies are born with congenital CMV, costing the NHS, social services and educational services approximately £330 million a year. The remaining £420 million falls on the wider economy through lost work days, because parents are often unable to work while caring for a disabled child, as well as funding specialist equipment and therapies not available on the NHS. 

Progress in tackling the infection rate of congenital CMV has been slow, with the UK lagging far behind other countries where preventative advice is routinely given to pregnant women. The charity calls for urgent action on reducing the number of children born with congenital CMV, by educating more midwives and GPs to advise pregnant women of simple hygiene measures they can take to reduce their risk of infection.

Congenital CMV affects more babies every year than Down’s syndrome, toxoplasmosis or listeriosis, yet most people have never heard of it. While most GPs and midwives will advise pregnant women to avoid unpasteurised food or cat litter, few will talk about preventative measures to reduce the risk of catching CMV. The main way pregnant women catch CMV is from small children’s saliva and urine. The charity wants pregnant women to avoid sharing cutlery with small children, not kiss children on the lips and wash hands after changing nappies or coming into contact with salvia.

Caroline Star, Chair of CMV Action said: “Our research reveals a hidden side of a secret infection. A staggering £750 million is being spent annually on the effects of a virus professionals have little knowledge about. From the evidence gathered, we believe this figure is a conservative one.

“We have also uncovered the significant economic burden faced by families.  Alongside this, many families living with the consequences of congenital CMV must also manage the impact of living on a reduced income as they are unable to work due to demands of caring for a disabled child. We need to send out the message that it is possible to reduce the rate of infection, and, as a result, the numbers of babies born with congenital CMV.”

 Julia Mills from Oxfordshire is mum to Ben, was born with congenital CMV 26 years ago. Ben now lives in supported housing and requires 24-hour care. CMV Action has estimated Ben’s care throughout his life has cost the NHS and social services £1.7m. Julia said: “The money spent by the NHS and social services on Ben is enormous, but equally I know we have also spent a huge amount to enable him to achieve the best possible life. We love Ben dearly and wouldn’t change him for the world. But it does frustrate me that nothing appears to have improved in the 26 since he was born.”

 Alyson Farrell from London is mum to 12-year-old Ellie who is living with serious health implications following her infection with congenital CMV. Ellie is tube fed, can’t walk, sit or stand by herself. Alyson said: “The thought that exactly the same thing is happening today, as what happened to Ellie 12 years ago is really disappointing. I am outraged it is not more commonly known about. Children could be saved from this if there was more preventative advice given. But, apart from CMV Action, there is no drive to move it up the agenda. It is crazy when you think of the costs savings it would make if less children were affected.”

 CMV Action was formed by a group of parents and grandparents personally affected by CMV. The charity raise public awareness of congenital CMV and campaign for better prevention measures and for a vaccine to eradicate the devastation the infection causes.

To read the report please go to Counting the Cost of CMV

For further information please contact:

Mel Barry,

Tel: 07966 764535

imeldabarry@yahoo.co.uk

 

     

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