1. THE BAD NEWS ALPHA symposium Durban July 2016 Emma Slaymaker (LSHTM) and Mosa Moshabela (UKZN)

2. Mortality remains high among PLHIV

3. In most study sites many deaths are in people who haven’t had care or treatment. Starting to change, in 2010-14 there was a greater proportion of deaths among those who had started treatment than in 2005-09 Reflects increase in person time after ART initiation Distribution of deaths across HIV care and treatment continuum

4. Mortality rates vary by stage Mortality among PLHIV has fallen at all stages High mortality around ART initiation and among people who had a gap in ART In later period, more person time spent on ART and after a gap in ART

5. Some deaths are inevitable. We can estimate expected deaths based on two scenarios: –If PLHIV had same mortality as HIV negative people –If all PLHIV had same mortality as those on treatment If everyone is treated promptly and appropriately, their mortality should be the lowest achievable for PLHIV. Giving people treatment as soon as it is necessary should reduce mortality to near background levels prior to treatment. How many deaths should we expect at each stage?

6. Many more deaths than expected 2005-092010-14 Across all the studies, for 2010-14: a mean of 40% of all deaths among PLHIV were in excess of what would be expected if everyone experienced the mortality of people on ART

7. At all cascade stages there is mortality in excess of: – the background mortality, and –the expected given the mortality rate on treatment Most excess deaths occur early in the treatment cascade. Not (yet) driven by ART default Of the total excess deaths in 2010-14, a mean of 60% across the studies occurred prior to ART initiation. Signs that this is changing for study sites observed to have high treatment coverage. Excess mortality is mostly pre-ART

8. ART availability improving- but may still impact on adherence Facilities which always had stock during the last 12 months Few facilities had 100% availability of test kits, OI drugs and ART

9. In depth interviews with 33 family members who had given verbal autopsies (VA) for PLWHIV who had recently died. Identified from the quantitative data available for the same communities across Eastern and Southern Africa. VA respondents were aware of deceased’s HIV status prior to death. Aim was to understand the social and biomedical circumstances in the lead up to their death. Most had initiated ART prior to death How can we learn from failure?

10. Engagement of deceased with HIV care continuum had been complicated by a series of inter-related factors Those who died had experienced an extreme combination of already identified, pervasive problems facing PLHIV No single factor emerged as dominant Poverty and practicalities Obstacles to care and ART ART-related problems remain Comorbidities complicate adherence

11. Series of obstacles to effective, stable treatment Qualitative themeMortality relevant consequence Individual delays Delayed Testing -For fear of being laughed at -Because asymptomatic Late presentation Delayed Disclosure -Concepts of masculinity Late presentation Gaps in ART Familial Lost treatment partnersGaps in ART Healthcare system Often praised Some barriers -Difficulties arranging appointments -Requests to change clinics went unheard Gaps in ART

12. Poverty impacts at all stages Poverty impacted on: –Ability to eat a nutritious diet –Cost of transport to clinics –Cost of care –Cost of family caring for PLHIV Migration of PLHIV to places that lacked local health facilities “We have the clinics in this community, but their services are so expensive. These are not government clinics, they are private… Government facilities are free but located far from the community and may need high transport costs. You need to spend about 20,000/= on a return journey.” (Brother of deceased male, Rakai) “We used to go and nurse her at the hospital together with my mother-in-law who stays down there. After nursing her we could come back and then go there again and with the scarcity of money in our rural area here, later on it became difficult for us to go there and come back repeatedly.” (Sister-in-law to a deceased female, Karonga) Compromising: –Timely diagnosis –Linkage to care –Adherence to ART

13. ART-related problems remain common The relation of PLHIV to medication is a troubled one: -Side-effects e.g. rashes, stomach pains, vomiting -Lack of faith in ARVs vs. traditional medicine -Dislike of taking medication -Treatment fatigue “He would refuse drinking medicine… He started complaining, “I am always drinking medicine but I don’t get cured”…Then the boy would leave, he would run away, maybe he would go to his father in Uzinza…Then the child refused again to drink medicine… Suddenly he ran away again and went to Uzinza….Suddenly I received information that your child has died.”(Mother of deceased young man, Kisesa) “When somebody who is sick has taken medicine for a long time, sometimes it becomes difficult because it’s like you are just forcing her to take in medicine. To her it can be like some kind of ill-treatment because she has taken the medicine for a long time and has now become exhausted.” (Sister-in-law of deceased female, Karonga) “I do not know a hospital where they treat the convulsions… He just stayed [at home] and used traditional medicine” (Mother of deceased man, Kisesa)

14. Comorbidities affect adherence and stretch family resources For many people, adherence to ART was complicated by comorbidities, especially: -TB -malaria -meningitis This could place an incredible burden on family members. Indeed some family members were unaware of how and where these should be treated “He was wasting away due to the constant illnesses… I thought it was because of food because there were food shortages. There was no one to assist. I took him and started to stay with him here so that I would try to…try to feed him and give him food. So he had sores on the throat and was finding it difficult to eat. I would give him porridge and pour it into his mouth like I am feeding a baby.” (Mother of deceased male, Manicaland) “It was late by the time TB was diagnosed, she was put on TB treatment when she was already weak. She was taking TB treatment together with ART drugs.” (Mother of deceased female, Masaka)

15. Conclusions Treatment cascade Prior to ART initiation Late diagnosis Late linkage to care Help is needed to encourage earlier testing and earlier disclosure to family members to facilitate social support ART initiation (first 6 m) Late presentation Practical support for care seeking Provision of care closer to PLHIV Treatment partners- enhancing social support Facilities are still short of test kits and ART Targetted approaches for hard to reach groups Continuation on ART Preventing gaps in ART Greater recognition of patients’ problematic relationship with medication Need to appreciate the financial and practical burden placed on PLHIV and family members Continuing social support goes beyond the biomedical aspects of care