…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?

EVA8 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 2012-2013, 6 cities: - survey of 213 women,

- documentation of 32 caseso 2013-2014, 3 cities:

- stakeholder analysis (23 in-depth interviews), - analysis of medical regulations,

- documentation of best practices

Findings: intrinsic barriers …

Intrinsic barriers

Fear and guiltPoverty

Social isolationChaotic 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 6th 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

EducationFood and clothing

Physicians’ training Building a network of

trusted physicians

Interdisciplinary team coordination

Referrals among clinical settings, NGOs, and rehab

centers

Outcomes, servicesSt. Petersburg,

2013-2014

• 46 women

• Prenatal care visits once per every 1.5 months of pregnancy (compared to just 2 visits for pregnant women non-clients)

Tomsk, 2012-2013

• 25 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, 2012-2013

• 12 women

• 12 babies, gestational age (mean): 37.25 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

«Е.V.A»Equity Verity Advocacy

www.evanetwork.ru