…a nobody’ patient Working with (and around) the system to ensure safe pregnancies of Russian women who use drugs Alexandra Julia Volgina Godunova

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

Women who use drugs, Russia from 9% to 68% live with HIV 60-66% have Hepatitis C Age ranging from 17 to 55, average: 24 How many pregnant women have history of drug use? 60,000 inject drugs

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?

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

Findings: intrinsic barriers …

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

Findings: system-wide barriers …

Healthcare services fragmented (specialized and geographically scattered), high-threshold (ID, residency registration, and insurance required; waiting lines) System-wide barriers Drug addiction treatment limited options for rapid detox, opioid agonist maintenance therapy not available, no options for long-term residential care 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)

 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 6 th month of pregnancy Only 74% women with HIV received ARV PMTCT, of them 48% were not fully adhered to the regimen; Consequences…

 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

 “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

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

Findings: local solutions

St. Petersburg, Tomsk, Naberezhnye Chelny

Working with and around the system! Intense outreach Ongoing case- management Education Food and clothing Physicians’ training Building a network of trusted physicians Interdisciplinary team coordination Referrals among clinical settings, NGOs, and rehab centers

Outcomes, services St. Petersburg, women Prenatal care visits once per every 1.5 months of pregnancy (compared to just 2 visits for pregnant women non-clients) Tomsk, women Enrolled in prenatal care at 8th-12th weeks of gestation (comparable with city-wide indicators for pregnant women who do not use drugs) Naberezhnye Chelny, women 12 babies, gestational age (mean): weeks (91% - between 36 and 40 weeks), birth weight: (mean): 2,740 gram

Outcomes, advocacy St. Petersburg City-supported ‘crisis apartment’ for pregnant women and new mothers who use drugs Tomsk Protocol on managing drug dependent women through pregnancy, childbirth, and early motherhood Naberezhnye Chelny Local ordinance to monitor and support each case of pregnant drug dependent woman

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

Public opinion and mass media Training physicians Working with authorities

Our present 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 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