CMV Action, the only UK charity offering advice and support to families affected by congenital CMV, is petitioning the government to review and fund newborn screening tests for cCMV.
CMV is a common virus that can infect people of all ages, causing no signs/symptoms. However, if a pregnant woman catches the virus it can be passed on to her unborn baby. The majority of babies born with congenital CMV will not have any symptoms at birth and will not suffer any long term problems. However, two or three babies are affected by the CMV virus every day in the UK – almost 1000 babies every year.
Congenital CMV is more common than Down’s Syndrome and causes more birth defects and childhood deaths than Toxoplasmosis (from cat poo) or Listeriosis (from soft cheese).
Around 1:200 babies are born with CMV, many with no symptoms at birth, but many go on to develop hearing loss or developmental problems.
CMV is the leading cause of non-genetic sensorineural hearing loss and in the first 28 days of life, a baby can be treated with anti-viral medication. If babies are not diagnosed they miss this treatment opportunity to limit some of the long-term impacts of the virus.
A recent report concluded that congenital CMV costs the economy £750 million a year. Newborn screening would quickly identify those who need to be treated and monitored, saving on these costs and untold heartache to families.
Associate Professor and Honorary Consultant in Paediatric Infectious Diseases, Dr Chrissie Jones, said that there are three main reasons why screening for cCMV of all newborn babies is worthwhile:
- The majority of babies born with cCMV have no symptoms but they can develop them later. Half of hearing loss, due to the CMV virus, can be progressive or late-onset. Screening all babies would allow them to be monitored and treated for symptoms caused by the virus, including hearing loss in a timely manner.
- Diagnosis within the first 21 days is critical to establish that the CMV infection is congenital rather than postnatally acquired. After this time the blood spot test needs to be relied on and this can delay diagnosis.
- Anti-viral treatment has to be started within the first 28 days of the baby’s life in order to be effective. Therefore, delayed diagnosis, waiting for hearing tests or other diagnostic tests, means this window of opportunity can be lost.
Sarah Dewar, chair of CMV Action said:
“Sadly, the difficulties faced by some children are not isolated cases. The charity supports many parents who have had a late diagnosis of the virus. This means that opportunities for monitoring and treatment have been missed and shows why newborn screening is so important.”
There is evidence from Canada and the US where some states have screening that this is making a significant difference to lives so we know that screening is the way forward.
The petition requires 10,000 signatures to be looked at by the government. Please help by signing the petition here: https://petition.parliament.uk/petitions/587186.