NICE recommends Ravulizumab for the treatment of atypical haemolytic uraemic syndrome
The National Renal Complement Therapeutics centre is pleased to hear today’s announcement that NICE has recommended ravulizumab (Ultomiris®) for funding for the treatment of atypical haemolytic uraemic syndrome.
Ravulizumab is a long-acting complement C5 inhibitor that acts in the same way as eculizumab. Whereas eculizumab infusions are required every 2 weeks, ravulizumab infusions are only required every 8 weeks.
In the light of this announcement, we have begun the process of contacting patients and their local clinicians to discuss whether switching to ravulizumab is the best choice for them. This will be an ongoing process over the next few months.
Important information about COVID-19
Guidance from the National Renal Complement Therapeutics Centre regarding vaccination against Covid-19 for aHUS patients
Organisations across kidney medicine have welcomed the arrival of effective Covid-19 vaccines.
Whilst the Covid-19 vaccine trials were not performed on patients with aHUS specifically, given previous experience with other vaccinations, there is no evidence to suggest that any of the available vaccinations for Covid-19 would not be safe and protective for our patients.
Any small risk associated with the vaccination is likely to be significantly outweighed by the potential benefits against Covid-19.
- We would recommend that all aHUS patients who are eligible for vaccination* (including those with a kidney transplant and/or on Eculizumab) are vaccinated against Covid-19.
- If you have been told that you are at risk of developing aHUS (due to a complement mutation)** and are eligible for vaccination*, we would recommend that you are vaccinated against Covid-19.
* People eligible for COVID-19 vaccines are summarised as per government guidance: Who can get the coronavirus (COVID-19) vaccine – NHS (www.nhs.uk). We cannot however recommend vaccination against COVID-19 for any aHUS patients who are not otherwise eligible for a vaccination as stated in the government guidance.
** For people at risk of developing aHUS and not on eculizumab, there is a theoretical risk of a vaccine precipitating aHUS. If you develop symptoms lasting more than a few days after the vaccination, blood tests to include: U&E, FBC and LDH should be performed (this is the same information on the “at risk” cards we produce). We believe that the benefits of a vaccine outweigh any theoretical risk. If any of these results are abnormal, patients should refer to the National aHUS Service website for advice (www.atypicalhus.co.uk or telephone 0191 282 0385).
The advice given in this document is general guidance for those with aHUS. We cannot advise regarding any other health conditions patients might have. For this, you would need to seek specialist advice where appropriate, or discuss with the healthcare professional giving the vaccine.
- Coronavirus (COVID-19) vaccination (www.nhs.uk)
- Kidney Care UK – Coronavirus (Covid-19) guidance for patients with kidney disease https://www.kidneycareuk.org/news-and-campaigns/coronavirus-advice/#research
- UK Kidney Association COVID-19 vaccine information Vaccine Information – The UK Kidney Association
- UK Kidney Association – Frequently asked questions letter Patient’s Frequently Asked Questions letter on COVID-19 Vaccines – March 2021 pdf
- UK Kidney Association guidance on COVID-19 vaccination in highly vulnerable people with kidney disease UKKA COVID-19 Vaccination Guidance for HCPs 06.07.21 pdf
- Briefing document on COVID-19 vaccination in the renal community
Briefing document on COVID-19 vaccination in renal community 24 December 2020 pdf
- COVID-19 vaccination for adult patients with kidney disease: a position statement from the UK renal community
Renal community position statement on COVID-19 vaccination – 4 Dec 2020 pdf
Atypical Haemolytic Uraemic Syndrome (aHUS) & Eculizumab Specialists
NRCTC specialises in Atypical Haemolytic Uraemic Syndrome (aHUS), Eculizumab, C3 Glomerulopathy (C3G) and MPGN.
Members of our team have been instrumental in research into pathogenic mechanisms of aHUS that has revealed the important role of complement.
Approximately 50% of patients with aHUS have an underlying complement abnormality. Eculizumab is a complement inhibitor that was recommended by NICE in the treatment of aHUS in England.
Eculizumab is currently funded by NHS England through the national aHUS service based within the National Renal Complement Therapeutics Service at the Newcastle upon Tyne Hospitals NHS Foundation Trust.
Summer is the high season for infections by bacteria of which some strains can cause haemolytic uremic syndrome. To inform patients about this type of HUS, particularly those who were referred to NRCTC to investigate for atypical HUS and were found to have STEC causing their symptoms, we have created a short video to summarise the cause of STEC HUS, its symptom and prognosis.