Surveillance to measure impact of ART

1. Surveillance to measure impact of ART Theresa Diaz, MD MPH CDC Global AIDS Program

2. Presentation • Background • AIDS Surveillance Strategies • Potential directions for AIDS surveillance • Mortality Surveillance • Examples of use of AIDS surveillance

3. Objectives and Types of HIV/AIDS surveillance

4. Purpose of AIDS Surveillance in Relation to ART • To measure burden • How many persons have AIDS? (How much medication, care services do we need?) • To monitor trends • Are the number of persons with AIDS decreasing over time? • To assess access to care • Did they know they were HIV positive before developing symptoms? • Were they offered ART or had access to ART? • Did they receive care or prophylaxis for O.Is?

5. Potential strategies by which to do AIDS surveillance

6. Potential strategies by which to do AIDS surveillance

7. Possible approach for AIDS surveillance (Once ART programs are in place) • Concentrated/low level epidemics– Do active universal AIDS reporting. • Staff seek cases through lab, mortality data, visiting select facilities in combination with passive reporting. • Review all reported cases for completeness and follow-up on incomplete cases. • Generalized epidemics - Do active sentinel reporting. • Select a variety of types health care facilities • Send staff to collect data at same time period each year • Use all sources of data including medical records, physician/nurse interviews, patient interviews, proxy interviews. • Will need protocols, data collection templates and suggested data analysis

8. Sampling for Sentinel Sites • Should include primary and tertiary facilities. • Should include facilities that are and are not part of ART program • Should have rural/urban proportional distribution similar to country population • Should try to include some private health facilities. • Ideally should have listing and information on all public health facilities in country to make selection.

9. Data Elements that could be Collected on AIDS Report Form • Demographics (sex, age, residence) • Place of care • First known positive HIV test • Risk? • Types of O.Is • Whether receiving ART, date started • Whether receiving preventive therapy for O.I.s, medication type and date started • Whether receiving therapy for O.I.s, medication type and date started by O.I. • First t cell count and viral load closest to diagnosis of AIDS.

10. Suggested Basic Analysis for AIDS Reporting Data • Overall number and number of AIDS cases by year– If doing universal • Who has AIDS and where (sex, age, risk?, geography) • How long before AIDS diagnosis did they know they were HIV positive (by sex, age, risk, geography). • Which O.Is are most common? • Did they get lab monitoring? • Did they start ART? • Did they receive prophylasix for O.I.s? (if should) • Did they receive treatment for O.Is. they have? • Proportion knowing HIV status before AIDS dx, receiving ART and /or prophylaxis by year.

11. Mortality Data weaknesses • No death registry in country • Death registry information not adequate enough to know who died from an AIDS related illness • Underreporting • Not timely

12. Mortality Surveillance – Potential Solutions • Improve national death registries • Do special studies - To determine if persons who died received ART, if so was ART adequate, if not, why not. • Cohort studies • Retrospective chart review or interview of proxies of persons known to have died of AIDS (verbal autopsies)

13. 80 70 60 50 No. of Cases and Deaths (in thousands) 40 30 20 10 1985 1986 1987 1988 1989 1990 1991 1992 1993 1994 1995 1996 1997 1998 1999 2000 2001 Year of Diagnosis or Death Estimated Incidence of AIDS and Deaths of Adults andAdolescents with AIDS*, 1985 - 2001, United States 90 1993 case definition AIDS Deaths 0 *Adjusted for reporting delays

14. 90 80 70 HAART 60 50 Percentage Surviving Zidovudine & PCP prophylaxis 40 30 20 10 0 1984 85 86 87 88 89 90 91 92 93 94 95 96 97 98 99 2000 Proportion of AIDS Patients Surviving at Least One Year After Diagnosis of Their First AIDS-Defining Opportunistic Illness, by Year of Diagnosis,1984 – 2000 Year (HIV/AIDS Surveillance Supplement Report 2002; 8(1):4)

15. Casos de aids (notificados e estimados) e taxa de incidência por ano de diagnóstico. Brasil, 1991 a 2002*. 30000 25 25000 20 20000 15 15000 10 10000 5 5000 0 0 91 92 93 94 95 96 97 98 99 00 01 02 casos notificados Incidência *Casos notificados até 31/12/02. HAART

16. Coeficiente de mortalidade por aids. Brasil, 1990-2000. 12,00 10,00 8,00 (por 100.000 hab) 6,00 4,00 2,00 0,00 90 91 92 93 94 95 96 97 98 99 00 Ano do óbito Fonte: SIM/DATASUS HAART

17. Conclusion • AIDS surveillance could • Measure burden (if universal) • Could assess coverage of ART programs • Could identify areas in need of improvement • Could monitor trends in relation to start of ART programs • Different strategies to collect data should be recommended based on epidemic type and extent of ART programs. • Recommended data collection forms, analysis and sampling of health facilities need to be developed. • Improvements of measuring AIDS related mortality are needed.