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Last updated: 3rd July 2024

Since the beginning of 2023 SMA UK, along with clinicians and partner organisations, has been advocating for wider access to the RSV palivizumab vaccine to prevent vulnerable babies and young children living with SMA type 1 from hospitalisation.   We have been writing to and meeting with members of the Joint Committee on Vaccination and Immunisation (JCVI), which makes decisions about access.


What is RSV?

RSV is a common respiratory virus that that can cause serious lung infections which can require intensive care for some. While RSV infection can occur at any age, the risk and severity of RSV and its complications are increased in older adults, neonates and small babies. It has a considerable impact on individuals and NHS services during the winter months.


Who has access?

To access the vaccine, babies and children with SMA must need routine non-invasive ventilation at home. In this new treated SMA landscape, there are many babies and young children who do not need long term ventilation, but who are still clinically considered to be respiratory compromised. They could still become very poorly if they have RSV.


What was the result of our advocacy?

In May 2023, the JCVI informed us that they were not going to expand the palivizumab vaccination programme which brings with it difficult decision making about which children should have access. Instead they would prioritise a UK wide screening programme with a new much cheaper and longer lasting licensed vaccine for RSV.


What is happening now?

The new RSV pregnancy vaccination for infant protection programme will launch in September 2024.

Pfizer's ABRYSVO VaccineAll women who are at least 28 weeks pregnant on 1 September 2024, should be offered a single dose of Pfizer’s ABRYSVO vaccine.  This will help protect babies against RSV from birth through the first 6 months of their life.

This is good news for future SMA families. It does not, however, protect young children living with SMA over 6 months old who are respiratory compromised, yet do not require long term ventilation.

SMA UK advise any family in this situation to speak to their specialist clinicians about any concerns.   


More about the new RSV vaccination programme, including access for older adults >