Sara Croxford , A Kitching, M Kall, M Edelstein and V Delpech

1. Mortality and causes of death among women living with HIV in the UK in the era of highly-active antiretroviral therapy Sara Croxford, A Kitching, M Kall, M Edelstein and V Delpech Centre for Infectious Disease Surveillance and Control (CIDSC) Public Health England London, United Kingdom

2. Key findings • AIDS is still the most common cause of death among HIV positive women in the era of effective treatment. • This is mostly due to late diagnosis and the majority of deaths occurring within the first few months of diagnosis. • Classification of causes of death can be challenging. • Our cohort of women diagnosed since 1997 also had high rates of non-AIDS death causes which warrants further investigation. Mortality and causes of death among women living with HIV in the UK in the era of HAART

3. Annual new HIV and AIDS diagnoses and deaths: UK, 1981-2012 ART available First test for HIV Mortality and causes of death among women living with HIV in the UK in the era of HAART

4. AIDS remains the silent killer: Ten-year mortality trends among persons diagnosed with HIV: England & Wales, 1999-2008 Simmons RD, Ciancio BC, Kall MM, Rice BD and Delpech VC. Ten-year mortality trends among persons diagnosed with HIV infection in England and Wales in the era of antiretroviral therapy: AIDS remains a silent killer. HIV Med 2013 Nov; 14(10):596-694 Mortality and causes of death among women living with HIV in the UK in the era of HAART

5. Objectives • Explore survival among the cohort of women diagnosed with HIV in the UK after the introduction of effective treatment. • Describe AIDS and non-AIDS causes of death among this cohort and compare with general population Mortality and causes of death among women living with HIV in the UK in the era of HAART

6. Women living with HIV in the UK • In 2012, there were 31,700 women living with HIV in the UK, a quarter of which were undiagnosed. • Late diagnosis among women is high. • Majority of diagnoses made in antenatal care and STI clinics. • Women are a population that is under studied Mortality and causes of death among women living with HIV in the UK in the era of HAART

7. Methods • Population: Cohort of women (aged ≥15 years) diagnosed with HIV in England and Wales between 1997-2012 and seen for HIV care. • Data sources: National surveillance data reported to PHE were linked to death record data from the Office of National Statistics. • Death categorisation: Deaths to the end of 2012 were categorised using a modified CoDeprotocol* into AIDS and non-AIDS-related causes. • Statistical analysis: Cumulative mortality was examined using Kaplan-Meier, with censoring at death or date last seen. * KowalskaJD, Friis-Moller N, Kirk O, Bannister W, Mocroft A, Sabin C, et al. The Coding Causes of Death in HIV (CoDe) Project: initial results and evaluation of methodology. Epidemiology. 2011;22(4):516-23 Mortality and causes of death among women living with HIV in the UK in the era of HAART

8. National HIV cohort of women: England & Wales, 1997-2012 • 32,400 women diagnosed with HIV • 30,010 in HIV care • 95% infected through heterosexual sex • 73% black African • 59% diagnosed under the age of 35 • 160,710 person years • 1,575 died (5.2%) • All-cause mortality rate 9.8 per 1,000 person years Mortality and causes of death among women living with HIV in the UK in the era of HAART

9. Cohort survival Women Men Mortality and causes of death among women living with HIV in the UK in the era of HAART

10. Characteristics of patients that died: England & Wales, 1997-2012 * Proportions where data are known. **Diagnosis with an AIDS-defining illness Mortality and causes of death among women living with HIV in the UK in the era of HAART

11. Mortality among women by cause of death: England & Wales, 1997-2012 Mortality and causes of death among women living with HIV in the UK in the era of HAART

12. Mortality by cause of death and sex: E&W, 1997-2012 Mortality and causes of death among women living with HIV in the UK in the era of HAART

13. Mortality among women by cause of death: E&W, 1997-2012 Pneumocystis (PCP) Lymphoma Tuberculosis 90% • Median age of death 39 IQR [33-46] • 90% diagnosed late • Median survival of 55 days [9-374] 72% • Median age of death 41 [34-49] • 72% diagnosed late • Median survival of 424 days [23-1,652] Mortality and causes of death among women living with HIV in the UK in the era of HAART

14. Non-AIDS related mortality among women by cause of death: E&W, 1997-2012 • Unspecified or non-recurrent pneumonia • Sepsis • 79% diagnosed late – AIDS? Mortality and causes of death among women living with HIV in the UK in the era of HAART

15. Non-AIDS related mortality among women by cause of death: E&W, 1997-2012 • Breast cancer (21%) • Lung cancer (15%) • Median age of death was 44 [39-53] Mortality and causes of death among women living with HIV in the UK in the era of HAART

16. Non-AIDS related mortality among women by cause of death: E&W, 1997-2012 Mortality and causes of death among women living with HIV in the UK in the era of HAART

17. Non-AIDS related mortality among women by cause of death: E&W, 1997-2012 • Progression to complications of viral hepatitis (30%; 15) • Alcoholic liver disease (35%; 17) • 1/5 infected through injecting drug use. Poster MOPE179 – Monday Deaths due to viral hepatitis and other causes of liver disease among a large national HIV cohort, England and Wales (1997-2010) A. Kitching, S. Croxford, M. Edelstein, M. Kall, V. Delpech Mortality and causes of death among women living with HIV in the UK in the era of HAART

18. Non-AIDS related mortality among women by cause of death: E&W, 1997-2012 • 58% of all deaths due to substance abuse were among people infected with HIV through injecting drug use. • Low median age of death • Accident/suicide 28 [25-42] • Substance abuse 33 [24-39] Mortality and causes of death among women living with HIV in the UK in the era of HAART

19. Non-AIDS related mortality among women by cause of death: E&W, 1997-2012 • COPD • Renal failure • Pancreatitis • Gastro-intestinal haemorrhage Mortality and causes of death among women living with HIV in the UK in the era of HAART

20. Limitations & future work • Challenges classifying deaths - AIDS vs. non-AIDS • This analysis focuses on women diagnosed since 1997. • Under-reporting of deaths • Current and future work: • Age-standardised mortality rates • London Death Audit • Improve quality of HIV care by reviewing the patient pathway of those who die with HIV in London, i.e. remediable factors • Identify particular scenarios that are worthy of further case investigation, including periodic public case presentation and audit Mortality and causes of death among women living with HIV in the UK in the era of HAART

21. Conclusions • Despite high uptake of antenatal screening, there are high rates of late diagnosis and deaths among HIV positive women. • The large majority of deaths are preventable. • Our findings highlight the need for increased and expanded HIV testing in general practice and community settings. • Good surveillance data on deaths and cause of deaths is crucial in monitoring the response to HIV epidemic Mortality and causes of death among women living with HIV in the UK in the era of HAART

22. NO ONE SHOULD DIE OF AIDS IN 2014

23. Acknowledgements The continuing collaboration of those who contribute to HIV surveillance in the UK is gratefully acknowledged. Without their generosity, time and effort the current level of understanding of the epidemic could not have been obtained. • HIV/AIDS Reporting Team particularly Rajani Raghu and Graeme Rooney • All contributors to STI, HIV and AIDS research and surveillance, and to all those involved in providing treatment and care to persons diagnosed with HIV in the UK. • The Office of National Statistics for providing death data. Mortality and causes of death among women living with HIV in the UK in the era of HAART