The costs associated with the management of congenital CMV provide strong evidence that more needs to be done in terms of prevention, diagnosis and intervention, in order to reduce the number of babies affected by cCMV and to provide better long-term outcomes for children affected.  

Our six recommendations will reduce the infection rate and minimise the future cost burden of cCMV on the NHS,  Government and on families themselves.

Wash Hands

Risk reduction advice should be routinely given to pregnant women

The best way to reduce the future cost burden of cCMV is by fewer babies being born with the infection. This is why it is vital midwives and GPs are educated to advise pregnant women of the simple hygiene measures to reduce the risk of infection. Lower rates of cCMV infection have been reported in countries where risk reduction advice is routinely given.

There is a long history of evidence that educational interventions can prevent congenital diseases. For example, efforts aimed at preventing foetal alcohol syndrome have reduced maternal alcohol consumption in pregnancy, pre-natal vitamin and folic acid supplementation have lowered rates of neural tube defects, and antiviral use in pregnancy has been shown to reduce mother to child transmission of HIV. reported in countries where risk reduction advice is routinely given. Despite this, information about avoidance of CMV infection is not routinely provided by the NHS. 

We also know that pregnant women are a highly motivated group who are more likely to follow CMV preventative measures than non-pregnant women and that women of childbearing age in the UK want to know more about CMV.

Vaccine

Produce and implement clinical guidelines and pathways for testing, improved diagnosis and management of cCMV

Paediatricians and other professionals working with families must understand the guidelines for managing CMV so that more families receive monitoring and support. 

As the estimated costs for acute antiviral treatment are relatively minor, more research needs to be conducted to assess whether antiviral treatment can be effective in preventing or reducing the severity of other forms of impairment that develop as a consequence of cCMV.

There is evidence to show that the antiviral medicine valganciclovir is effective at reducing SNHL, as well as developmental delays in other neurocognitive functions, in the 24 months following birth.

Given that a high proportion of the cost burden is attributable to babies born without symptoms, who later develop neurodevelopmental impairments. More research into the benefits of this treatment in babies presenting with no symptoms may provide another avenue from which to target the cost burden of the virus.  It is only through this that we will be able to bring the UK in line with other countries more advanced in managing CMV infection.

Research

Targeted screening for cCMV in children who fail a newborn hearing test to enable affected children to receive treatment much sooner

There have been significant advances in laboratory technology that enable cCMV to be diagnosed promptly in children who fail their newborn hearing screening test. 

A pilot study in the UK reported that such screening would be cost-effective. A recent study in the USA indicated that targeted newborn screening would be cost effective options for detecting and reducing hearing loss caused by cCMV.

Treatment

Universal screening for cCMV to enable affected children to receive treatment much sooner

There have been significant advances in diagnostic technology and treatments in sensorineural hearing loss (SNHL). Now, more than ever before, universal screening for cCMV would enable affected children to receive treatment much sooner. 

A study indicated that universal newborn screening would be cost effective for detecting and reducing hearing loss caused by cCMV in the USA. Although this is based on the US healthcare system, and not all assumptions are likely to be applicable to the UK, it suggests there is potential for a similar impact in the UK.

Screening

Invest in research to support clinical decision-making

Information on congenital CMV is limited and what does exist is out of date. This is severely hampering our ability to monitor treatments and longer-term outcomes for children affected by cCMV. 

More investment is needed to gather knowledge and data on which we can make sound, evidence-based clinical decisions. Parents would welcome tests at birth that could provide guidance on the severity of symptoms their child is likely to suffer from. 

The safety and cost effectiveness of treatment during pregnancy should be evaluated. While this clearly includes research into the efficacy and cost of new drugs, attention should also be given to new diagnostic techniques such as foetal MRI or blood sampling for early identification of babies who may benefit from anti-viral treatment.

Guidelines

Develop a vaccine to end CMV

Research into a vaccine for CMV has been massively underfunded for years, causing huge delays in the search for an effective vaccine. Despite this, the prospect of an effective vaccine looks promising with nine manufacturers reporting in 2018 that they have vaccines at various stages of development. 

With the accelerating pace of research, it is believed a vaccine may be available within 10 years. We recognise that it will take years for CMV to become controlled in a whole community once a successful vaccine becomes licensed; this is why we believe investment in this area should be accelerated now, to reduce the number of years that CMV drains funds from the NHS.