Update on JCVI’s Ongoing Decision-Making re: Widening the Access Criteria for Palivizumab Vaccine for RSV to Include Infants Living with SMA Type 1

Page last updated: January 2024

The newly established RSV subcommittee met in February 2023 to discuss a recommendation to add a diagnosis of SMA Type 1 to the eligibility criteria for the Palivizumab vaccine.

Despite numerous communications from the JCVI stating that they agreed ‘in principle’ with our requests, their latest letter to SMA UK received in May 2023 states:

"The secretariat had received correspondence about young children with spinal muscular atrophy (SMA) Type 1 who were considered to be at particular risk and potentially could be included in the eligible cohort based on clinical judgement but there was an obstacle in terms of the mechanisms for this and funding."

We did not feel that this was a good enough explanation for the SMA community.

We had also suggested that if all children with SMA Type 1 could not be added to the eligibility criteria, then there should be a mechanism for clinicians to refer babies and young children that they thought showed symptoms of respiratory compromise and who would benefit from the RSV vaccine. To this point they replied:

"The committee noted that according to specialised commissioning the issue of clinical discretion was problematic and difficult to implement via the current system and that there were concerns about inconsistencies and inequalities of the uptake of this."

In the same letter, the JCVI informed us that rather than continuing to pursue further expansion of the palivizumab vaccination programme and difficult decision making about which children should have access, they are now prioritising a UK wide screening programme with a new much cheaper licensed vaccine for RSV, Nirsevimab. Back in December, we reported that this programme was in the pipeline and could be in effect for this winter. Unfortunately, the JCVI letter stated that this has now been pushed back to 2024, with only those currently eligible swapping to Nirsevimab for the 2023/2024 winter season.

SMA UK believe that families with children under 2 living with SMA Type 1 should not have to wait to be added to a population wide vaccination programme. For many families this would mean another yet year of anxious shielding through the RSV season. TreatSMA and MDUK agreed, so SMA UK led on a joint response to the JCVI and influential Government Ministers which you can read here.

We hope that bringing all the UK SMA charities together with one voice to advocate for the small cohort of under twos that would benefit from the RSV vaccination this year, will encourage them to rethink their decision.