Alexandra Julia Volgina Godunova

1. …a nobody’ patientWorking with (and around) the system to ensure safe pregnancies of Russian women who use drugs Alexandra Julia VolginaGodunova

2. Who are we? EVA 8organizations and 267individuals in 18Russian regions working to improve the lives of women affected by HIV, TB, and drug use

3. Women who use drugs, Russia

4. What is going on with pregnant women who use drugs? • How does the system address their unique needs? • Who is responsible? Whose patient is the pregnant woman who uses drugs?

5. Project • Goal: documenting evidence for policy change • Data: 3-year study • 2012-2013, 6 cities: - survey of 213 women, - documentation of 32 cases • 2013-2014, 3 cities: - stakeholder analysis (23 in-depth interviews), - analysis of medical regulations, - documentation of best practices

6. Findings: intrinsic barriers …

7. Intrinsic barriers • Targeted outreach • Providing basics: food, clothing, refuge • Peer support • Addressing myths and fears Fear and guilt Poverty Social isolation Chaotic lifestyle Distrust in healthcare system

8. Findings: system-wide barriers …

9. System-wide barriers Healthcare services fragmented (specialized and geographically scattered), high-threshold (ID, residency registration, and insurance required; waiting lines) Regulatory framework standards of care for pregnant women who use drugs unavailable; gaps between WHO and Russian guidelines, no guidance on managing pregnant women with multiple conditions (drug use, STD, HIV, cardiovascular disease) Drug addiction treatment limited options for rapid detox, opioid agonist maintenance therapy not available, no options for long-term residential care

11. Consequences… • Inadequate prenatal care • Only 40% had the required number of prenatal visits; • 27% - once or never • Late initiation of ARV • On average, PMTCT started at 6th month of pregnancy • Only 74% women with HIV received ARV PMTCT, of them 48% were not fully adhered to the regimen;

12. Unaddressed drug addiction problem during pregnancy 88% attempted to stop/reduce drug use or switch to less harmful use Only 35% were able to completely withdraw through medical or self-imposed detox 10% sought, but could not secure residential care Lack of relapse prevention intervention at post-delivery stage

13. “Nobody’s patient” • Medical care is split into parts: each part is trying to do something, but no single structure is ultimately responsible for the patient • Referring without monitoring = sending the woman into the abyss • Offering less care in the absence of standards • Offering less care because of judgmental attitudes/fears/dislikes of drug-using women

14. Preventable complications and poor pregnancy outcomes 29% had miscarriage 8% had preterm delivery followed by neonatal death

15. Findings: local solutions

16. St. Petersburg, Tomsk, Naberezhnye Chelny

17. Working with and around the system!

18. Outcomes, services

19. Outcomes, advocacy

20. Next steps: work with the system • Analyze, document, and disseminate best practices • Educate decision makers and medical community and find potential champions • Consolidate advocacy strategies at the local and country-wide level • Work with local partners to improve their capacity • Work with public opinion and engage media

21. Public opinion and mass media Training physicians • Working with authorities

22. Our present Our vision A pregnant woman who uses drugs can count on help of many professionals: counselors, social workers, drug addiction doctors, and OB/GYN doctor Assistance will be tailored to the woman’s individual situation and specific needs Happy mothers and healthy babies A pregnant woman who uses drugs can only rely on herself An OB/GYN provider will send her to a drug addiction doctor Detox will put her at risk of miscarriage The woman will try to stop using on her own, but will likely relapse

23. «Е.V.A»Equity Verity Advocacy www.evanetwork.ru