Tuberculosis in England

1 Tuberculosis in England 2021 report (Presenting data to end 2020). 1. Tuberculosis in England : 2021 report (presenting data to end 2020). Contents Acknowledgements 3. Executive summary 4. Preface 8. 1. TB notifications and incidence 13. 2. Microbiology and drug resistance 30. 3. Time to treatment start and treatment outcomes in people with sensitive and resistant TB 38. 4. TB in children 50. 5. TB in under-served populations 63. 6. TB prevention and control 73. 7. Conclusions and recommendations 77. References 82. Appendix I. Supplementary tables 83. Appendix II. Supplementary tables of local level data 147. Appendix III. Methods 167. Appendix IV. Surveillance data quality 174. Appendix V. National level data for TB strategy monitoring indicators, England , 2000 to 2020 184. List of acronyms 194. Glossary 196. 2. Tuberculosis in England : 2021 report (presenting data to end 2020). Acknowledgements We gratefully acknowledge all those who contributed information on TB notifications in England , including physicians, nurses, microbiologists, scientists and administrative staff.

2 Special thanks are extended to those who co-ordinate and oversee TB surveillance and control at sub-national level, including the health protection teams, for their essential collaboration in the ongoing improvements to TB surveillance. This report was prepared by the Tuberculosis Unit, Chief Public Health and Clinical Advisor Group, UKHSA. The report was made possible through collaboration with the Field Services, UKHSA, and National Mycobacterial Reference Services, UKHSA. Authors Morris C Muzyamba, Rosanne de Jong, Rimsha Qureshi, Dona Foster, Loes Wals-Griffith, Adil Mirza, Tracey Langham, Surinder Tamne, Lauren Ahyow, Suzanne Coles, Martin Dedicoat, E. Grace Smith and Esther Robinson. TB Unit, UKHSA, Lynn Altass, Senior Programme Manager, TB prevention , Medical Directorate, NHS England and NHS Improvement Suggested citation UK Health Security Agency. (2021) Tuberculosis in England : 2020. UK Health Security Agency, London. 3. Tuberculosis in England : 2021 report (presenting data to end 2020).

3 Executive summary The UK Health Security Agency (UKHSA) is committed to meeting the World Health Organization (WHO) Tuberculosis (TB) elimination targets by 2035 as outlined in the TB Action Plan for England 2021 to 2026. The TB Action Plan builds on the work of Collaborative TB. Strategy for England and will support a year-on-year reduction in TB incidence and in-UK TB. transmission. The number of TB cases reported declined from 4,725 in 2019 to 4,125 in 2020. This represents an overall decline in the rates of TB to per 100,100 in 2019 to per 100,000 in 2020. In England there has been a reduction in TB incidence after a peak in 2011 (8,280 notifications and a rate of per 100,000 reported). Since 2011, the number and rate of TB notifications had fallen steadily until 2019, (an overall decline of approximately 43%) when a rise of was reported. At a rate of per 100,00 population, 2020 is the fourth year the rate is below the WHO definition of a low incidence country.

4 As with previous reports, rates of TB continue to be highest in people born outside the UK, those with social risk factors, and from our more deprived communities. The data presented in this report include notifications to the end of 2020. During 2020, major impacts on healthcare, migration, and social interactions due to the ongoing coronavirus (COVID-19) pandemic will have affected TB notifications in complex ways. These are undergoing further exploration and findings will be published separately. It is important to note that the data and findings from 2020 are unlikely to represent the true burden of disease. As such their use in monitoring progress against both elimination goals and planning service provision will require careful consideration and further analysis of both 2020 and 2021 data . TB notifications and incidence In 2020, 4,125 people were notified with TB in England , with a rate of per 100,000. population. This rate was an decline compared to 2019 and remains below the 10 per 100,000 WHO definition of a low incidence country.

5 People born outside of the UK accounted for of 2020 notifications. The rate in non-UK. born individuals is per 100,000; over 15-fold greater than the rate in the UK born population. Numbers and rates of TB notifications declined in UK-born and non-UK born individuals in 2020 compared to 2019. This pattern differs in children, with two-thirds of paediatric cases reported in children born in the UK, reflecting potential transmission within the UK. 4. Tuberculosis in England : 2021 report (presenting data to end 2020). Laboratory confirmation of TB. In 2020, of people notified with TB had their diagnosis confirmed by culture, which was a decrease from 2019 ( ), and the lowest rate since 2013. Some reduction in culture confirmation may be due to lack of access to healthcare and pathology facilities. Thirty per cent of people notified did not have any laboratory results reported (culture, microscopy, PCR, or histology) to confirm their TB diagnosis.

6 As in previous years, culture confirmation was higher for pulmonary ( of cases) than non- pulmonary cases ( ). Culture confirmation rates in children are much lower at 27% for pulmonary disease, and for non-pulmonary cases. The importance of culture for Whole Genome Sequencing (WGS) to evaluate drug resistance and understand transmission between cases cannot be overstated. TB transmission Whole Genome Sequencing (WGS) continues to be utilised routinely on all M. Tuberculosis isolates to identify closely related strains of TB to inform possible transmission between patients. This information has been shared with Regional Health Protection Teams, and TB. services during the pandemic. UKHSA is undertaking ongoing work to develop and improve reliable indicators of transmission to assist in efforts to reduce UK TB incidence in compliance with the Action Plan. Delay from symptom onset to treatment start Among people with pulmonary TB (pTB) in 2020, the median time between symptom onset and treatment start was 79 days.

7 Almost a third ( ) of people with pTB experienced delays of 4. months or more between symptom onset and treatment start, similar to 2019 but higher than in 2018. As in previous years, the age group with the highest proportion of delay, over 4 months, was the over 65s, and higher in the UK-born ( ) than the non-UK-born ( ) cohort. TB outcomes in the drug sensitive cohort (non-MDR/RR TB) are reported for the 2019 cohort as those starting treatment in 2020 will not have completed treatment at the time of this report. of people notified with non-MDR/RR TB completed treatment within 12 months, a slight decrease from 2018 ( ). This decline was seen in all age groups and was most marked in the 45 to 64 years age group (85% to 80%). Treatment completion rates declined with increasing age, with completion rates in children being the highest at 5. Tuberculosis in England : 2021 report (presenting data to end 2020). Drug resistance and outcomes in the drug resistant cohort Of cases with laboratory-confirmed TB, had resistance to at least one first-line drug, and of cases were multi-drug resistant (MDR) or rifampicin-resistant (RR).

8 This represents the highest recorded percentage of drug resistant cases since the current enhanced surveillance scheme started in 2000. There was a higher number of MDR/RR cases in 2020 (n=58) compared with 2019 (n=53). despite the total number of reported TB cases overall being lower in 2020 than in 2019. The highest number of MDR/RR TB cases was in London and the highest rate in the East Midlands. Of people in the 2018 drug-resistant cohort, for whom outcomes are available for the 2020. report, 62% had completed treatment by 24 months, whereas were lost to follow-up, and 8% had died by the last recorded outcome. TB in under-served populations In 2020, of people notified with TB had a social risk factor (SRF), broadly comparable with previous years. 22% of UK-born cases had at least 1 SRF recorded, compared with of non-UK born cases. Cases with SRF were much more likely to have pulmonary disease (77% of cases) compared to those without SRF ( ), less likely to complete treatment (79% vs 89%) and more likely to die or be lost to follow-up.

9 HIV testing among TB cases HIV testing information was known for of people (3,885) with of these both offered and undertaken a HIV test. data on co-infection of TB and HIV is not reported in this annual report. BCG vaccination There are 5 local authorities, all in London, that offer a universal BCG programme in 2020 to 2021. Among these 5 areas, BCG coverage ranges from 20% in Hounslow to in Newham. BCG vaccination coverage increased in one of 5 areas (Newham), and decreased or stayed the same in the other 4 compared to 2019 to 2020. 6. Tuberculosis in England : 2021 report (presenting data to end 2020). Latent TB infection and treatment The Latent TB infection (LTBI) programme for migrants from high-incidence countries was heavily impacted by the COVID-19 pandemic. NHSE&I provided guidance on the provision of TB services in March 2020 which included pausing the national LTBI programme from April 2020. There was a significant fall in LTBI test and treatment activity with 2020 to 2021 LTBI test activity achieving approximately 31% of 2019 to 2020 activity.

10 United Kingdom Tuberculosis pre-entry screening programme Numbers of people participating in the pre-entry TB screening programme fell in 2020, with 340,623 pre-entry TB screening episodes in 2020 (a decrease of against 2019). This may again reflect the impact of COVID. There were 385 cases of TB detected ( per 100,000) in this group. 7. Tuberculosis in England : 2021 report (presenting data to end 2020). Preface Intended audience This report is aimed at healthcare professionals involved in the diagnosis and/or treatment of people with TB, commissioners involved in planning and financing TB services, public health professionals working in the control of TB or health of at-risk populations, researchers with an interest in TB, and government and non-governmental organisations working in the field of TB. Aim of report This report describes the recent epidemiology of TB in England at a national and subnational level and presents data on the implementation of the UK pre-entry TB screening programme, the national programme for systematic latent TB infection (LTBI) testing and treatment in new migrants, and BCG vaccination coverage estimates.