Progress in addressing legal barriers to HIV Testing and Counseling of adolescents: the

experience of Ukraine

1

Olga Balakireva, Ukrainian Institute for Social Research after Alexander Yaremenko (Kyiv)

Working Meeting of Country Offices and Key Partners Implementing the Multi-Country Programme on Strengthening Capacity of non-state actors (NSA)

for HIV/AIDS Testing & Counseling (HTC) of Most-at-Risk Adolescents and Young People

27 November, 2013, Baku, Azerbaijan

Epidemiological situation in Ukraine (1)

• Population size estimate of HIV+ at the beginning of 2013 (aged 15 years and older) 238 thou. persons

• Approved NEW National AIDS Program for 2014-2018.

• In New Program – MARA as a target group for interventions: «Taking steps to reduce the number of new HIV-infection cases among most-at-risk adolescents for HIV-infection by 70% (14–18 years old)»

Proportion of HIV-infected depending on the ways of infection transmission, %

Number of children born by HIV-infected mothers, persons

2 22 222 parenterally transmitted 222 22 sexually transmitted

Epidemiological situation in Ukraine (2)

Dynamics of officially registered new cases of HIV-infection in Ukraine

183

1490

5400

89138575

5827 62127000

8756 10009

12491

13770

16078

17669

18936

19840

2048921177

20743

20,7

9,3

20,4

2

18,815,3

11,3

5,6

-5,1

-10,1-11

-15

-10

-5

0

5

10

15

20

25

0

5000

10000

15000

20000

25000

Ra

te o

f in

cre

as

e, %

Ab

so

lute

nu

mb

er

absolute number of new casesof HIV-infection

rate of increase

What did we start from?

Overview of situation

• No strategy

• No population size estimate

• Many stakeholders, few service providers

• No clear mandates & ineffective coordination

• Double standards & violation of children’s rights

MARA – were not the priority of the AIDS response

CHILDREN AND YOUNG PEOPLE LIVING OR WORKING ONTHE STREETS: THE MISSING FACE OF THE HIV EPIDEMICIN UKRAINEUNICEF, AFEW, Kyiv 2006

Taken steps (1)

Analysis of situation: Desk study on the available data concerning MARA (2007) A number of researches among adolescents living and

working in the streets (baseline survey - 2008, repeated - 2011, HIV/AIDS Alliance - 2013)

Secondary analysis of the data of biobehavioral studies: among most-at-risk adolescents - IDUs, FSWs and MSM (2007, 2008, 2009, 2011-12, 2013-14)

Population size estimate of children and youth aged 10-19, belonging to risk groups (2007, 2012, 2014)

Analysis of legislation on HIV/AIDS prevention and access to medical and social services among adolescents, including most-at-risk adolescents (2008, 2013)

Taken steps (2)

Analysis of situation (Continuation): Analysis of stakeholders and evaluation of the potential of

the organizations providing or planning to provide services to adolescents living and working in the streets (2008, 2012)

Monitoring and documentation of the implemented service provision models for adolescents, including MARA, at the local level (2008-2014)

Review of national legislation and current practices of VCT for adolescents, including most-at-risk adolescents (2012)

Comprehensive research “The Voices, Values and Preferences of Adolescents on HIV Testing and Counseling” (based on WHO methodology) (2013)

What do the findings demonstrate? (1)

Level of risky practices are higher

High level of vulnerability

Limited access to medical and social services, including HTC

Limited number of NGOs focused on MARA; low potential; dependence on donors

Children protection system - does not work; the violation of children's rights

What do the findings demonstrate? (2)

Prevalence of HIV among "street children“ based on the results of rapid tests,%(The study was conducted in three cities: Donetsk (N = 307), Kyiv (N = 311), Odesa (N = 311))Health Rights International & CDC Atlanta, 2008

Prevalence of HIV among adolescent IDUs, FSWs and MSM, %(based on biobehavioral studies)ICF "International HIV/AIDS Alliance in Ukraine"AIDSs Center, UISR after A. Yaremenko

2007 2008 2009 20110

2

4

6

8

10

12

14 14

64 4

05

2

10

6

1

IDUs FSWs MSM

High level of infection among “street children”

Reduce of infection level among adolescent IDUs, FSWs, MSM

Among all Donetsk Kyiv Odessa were in the street up to 3 years

were in the street more than 3 years

have the experience of “sex in exchange”

have the experience of injection drug use

What do the findings demonstrate? (3)Lack of access to HTC for young people and MARA

Comprehensive research “The Voices, Values and Preferences of Adolescents on HIV Testing and Counseling” (2013)

Experience of HIV-testing in the last 12 months:

•7,2% among all respondents•21% among risk group (27% – girls, 19% – boys)

During lifetime:Among all

10,3%

B Y A G E

boys girls 13 years old

14-15 years old

16-17 years old

18-19 years old

20-24 years old

7.214.5

2.8 2.910.5

45.9 45.5

What do the findings demostrate? (4) The need to inform and motivate adolescents to HTC

Insufficient level of adolescents’ awareness regarding the possibility

of independent (without parents) acceptance of medical services since 14 years old

Correctly determine the age limit:15,5% among students of boarding schools13,1% among students of vocational schools

The first phase of the survey in the framework of campaign Get tested (“Test for HIV")United Nations Children Fund UNICEF in Ukraine, UISR after A.Yaremenko, 2013

Among students of boarding

schools(N=117)

Among students of vocational

schools(N=333)

Plan to take HIV-testing now or in future 40,6 38,1

Are not sure 35,9 37,8

Generally do not plan testing 22,0 24,0

What do the findings demonstrate? (5)

Requirements of MARA are much broader than just

HIV prevention and counseling

Wide range of barriers to normal

socialization

Barriers to HTC services acceptance

Key barriers to service provision Institutional level (weakness of the human rights institute; crisis of

the institute of trust; health care system; criminal law enforcement policy; reform of the social sphere; normative and legal base; weakness of NGO, etc.)

Socio-cultural level (confidentiality; inability to perceive underage persons; attitudes towards HIV-infected; focus on myths and rumors; unfriendly treatment by service providers as a norm of behavior)

Structural barriers (network of HIV prevention services; lack of focus on the needs of adolescents; insufficient provision; underdeveloped network of social workers, especially outreach workers; ineffective information policy)

Subjective barriers (health is not considered as value; low awareness; lack of money; absence of identification documents; distrust towards service quality; expectations of unfriendly treatment on the part of service providers; fear of the breach of confidentiality and fear of stigmatization; lack of positive experience)

Legal barriers to T&C referring and ways of solution (1)

Contoversions concerning age of services provision and parents consent:BARRIERS SOLUTION

1) Until December 2012 lack of legislation on:

• possibility of independent HIV testing of persons aged 14 years and older

• examination, further registration and treatment of adolescents under the age of 14 years who do not have parents or guardians

• examination of the child, when the legal representatives oppose referred manipulation, but there is a direct threat to the health and life of a child.

2) The necessity of bringing in line of specialized law and applicable T&C Protocol; specialized law and orders of the MoH of Ukraine, orders and instructions for chief physicians of medical institutions

Advocacy and changes in legislation:In the new wording of the Law "testing to detect HIV persons aged 14 and older is conducted voluntarily“. Changes in the new Order of HTC are

introduced: permission to conduct the examination

and subsequent registration and, if necessary, treatment of adolescents under 14 years old who do not have parents or guardians. HTC can be carried out at the request of the guardianship.

defined - how to examine and treat the child, regardless of age, even when legal representatives are against the specified manipulations if there is a direct threat to the health and life of a child.

Legal barriers to HTC referring and ways of solution (2)

Contoversions concerning age of services provision and parents consent:

BARRIERS SOLUTION

3) Norms do nor work (prepossession of health workers and NGO experts to testing of adolescents, including MARA, aged from 14 years).

The need to prepare appropriate guidelines and methodological explanations for experts, and to conduct additional trainings for service providers concerning: providing HTC for minors considering the

features of all age groups possibility/impossibility of providing HTC

services in the presence of parents/officials of a minor

subsequent prescription of antiretroviral therapy when determining the HIV positive result

Legal barriers to HTC referring and ways of solution (3)

Legal contraversions concerning referrals:BARRIERS SOLUTION

The lack of clear and functional mechanism of referral between institutions

Advocating in the new version of Order of HTC measures to improve the mechanism of interaction of social and medical services in HIV examination of adolescents

Legal barrirers regarding with the right to information about the result of HIV testing and the right to privacy of health status

1.Normative-legal acts do not contain norms on information provided to the child during pre- and post-test counseling

2.Mechanism of data transfer does not contain clear recommendations on the requirements for the information transfer, legal provisions, terms of the results of HIV testing and subsequent results of examinations, treatment, etc.

Advocacy concerning the ensurance of the project of new Order of HTC the section on features of HTC of adolescent children, regarding the age, socio-psychological characteristics and level of intelligence.

Barriers to T&C referring and ways of solution (4)

BARRIERS SOLUTION

Health is not the value for the adolescents

Implementation of the targetted service delivery models => training of service providers => increase of the indexes of clients’ awareness => increase of the frequency of addressing for servicesResult (using the example of comprehensive service delivery models for adolescent-FSWs in the cities of Lvov and Simferopol):

Lvov (CF «Salus»):

• 9 months of model implementation

• 116 covered clients

• HIV testing with rapid tests took 62 girls-FSWs, test verification – 3 persons, test for syphilis, hepatitis B and C - 62 persons

• Level of knowledge about the ways of HIV transmission increased more than twice: 13% (6 out of 45 persons) of all respondents at the beginning of the project and 34% (17 of 50 persons) –

at the end

Simferopol (CF «Hope and rescue»)

• 9 months of project implementation

• 108 adolescent-FSWs were covered by the services

• 174 rapid HIV-tests were made, i.e. an average of 1.6 tests per 1 girl

• At the end of the project there was no girl among all the respondents who would not know where one can have HIV testing (at the beginning of the project 28% did not know). The awareness of all the places where one can have HIV test increases

Achievements (1) Evidence base for strengthening the HIV response was obtained

Population size estimate of MARA was conducted

MARA are recognized as target group in HIV prevention and service provision

Changes in the normative-legal framework (awareness about the legality of the services provision since 14 years old was formed)

The obtained data was used to develop regional strategic action plans on HIV prevention among MARA

First - National Action Plan for 2009-2013 on HIV prevention among children and young people from most-at-risk and vulnerable populations

Advocacy for the actions on HIV-infection/AIDS prevention among adolescents aged 14 years, including those from most-at-risk group, in New National AIDS Program (2014-2018)

Advocacy for the need of crosssectional study among MARA (ICF "International HIV/AIDS Alliance", 2013-2014)

Achievements (2) For the first time in Ukraine the analysis for the development of targeted

interventions aimed at most-at-risk adolescents was made and pilot models were implemented

Targeted models have shown to be effective – increasing access to HTC and quality improvement

Dnipro-petrovskRCSSFCY

- adolescents and young people who use psychoactive substances- integration of the services to the hospital

• The proportion of persons who know where to address for testing and counseling for HIV has increased by 10%.

• The proportion of adolescents who in the last 12 months were tested for HIV and received their results increased almost twice (from 2008 to 2011)

Donetsk RCSSFCY

- adolescent-IDUs aged 14-19 - implementation of “friendly” HIV prevention intervention via formation of informal leaders

KyivKCCSSFCY

- MARA, vulnerable children and youth- street preventive work under the technology of multidisciplinary teams

OdesaOCF “The Way Home”

- minors – patients-IDUs who are hospitalized - social rehabilitation

NGO “Faith. Hope. Love.”

- underaged girls who suffered from violence including sexual or are involved into commercial sex- socio-psychological rehabilitation by the method of «one-stop-shop»

Mykolaiv CF “UNITUS”

- girls involved in providing sexual services for remuneration - comprehensive package of medical and social services- positive experience is extpanded models in Lviv and Simferopol

BUT … Barriers: violation of HTC principlesVIOLATION OF ORDERTest WAS NOT anonymous 34%No pre-test counseling provided 30%No post-test counseling provided 27%Did not receive testing results 6%

RIGHTSDid not inform about the right to refuse from testing 23%Did not ask permission to perform testing 17%Adolescents were ordered to present parental permission to undergo testing 9%

NORMSAdolescents had to conceal their real age 8%

ACCESSIBILITYTesting was not free of charge 17%Source: Comprehensive research “The Voices, Values and Preferences of Adolescents on HIV Testing and Counseling” (2013), % among those who had the experience of T&C

Current activities (1)

Changes in legislation

Provide normative definitions of terms: “adolescents”, “MARA”, “adolescents vulnerable to HIV”, “representatives of risk groups” and “persons vulnerable to HIV infection”.

Identify taking into account the position of WHO and Ukrainian legislation: age groups of adolescents (with the appropriate range of legal rights and duties for each age group); list of most-at-risk for HIV infection groups.

Ensure the presence of the section on HTC features for adolescent children, taking into account their age, socio- psychological characteristics and level of intelligence in the new “Order of Counseling and Testing on HIV Infection”

Current activities (2)

Changes in legislation

Introduce changes and additions to:

• Order of the MoH of Ukraine (2002), “On the Improvement of Management of Health Care for Adolescent Children”: concerning the age of adolescents;

• Order of the MoH of Ukraine (2009) on approving the standards of medical care provision for adolescents and young people: concerning the procedure of obtaining by adolescents, including MARA.

Strengthen monitoring the compliance with the basic law of Ukraine regarding chargeless and confidenciality of HIV testing for children.

Current activities (3)

Conduction on regular basis of the monitoring studies that allow to adjust prevention activities among adolescents and particularly MARA in time.

Mending the system of referrals and cooperation between organizations of social and medical focus, working in the area of services provision for adolescents/MARA.

Training of service providers:• Activation of explanatory work among service providers on the

rights of adolescents, including most-at-risk groups, concerning HTC.

• Include into the education programs (universities, institutions of professional development) the relevant topics on HIV/AIDS, HTC and minors (normative and legal aspects, legal responsibilities, rights and duties of medical/social workers/ teaching staff and minors, including PLWH).

Current activities (4)

Motivating adolescents to testing :• Among adolescent and youth, particularly MARA,

upgrade the level of knowledge about HIV-infection/AIDS and motivation to knowing one's HIV status, which is important for the correction of risky behavior and the required treatment.

• Implementation of active use of modern technology (online counseling via social networks in the Internet, mobile phones).

• Conduction of focused campaigns for adolescents and youth to disseminate information materials with bright slogans that will be understandable to different age groups.

For more information:

UNICEF: (044) 254 24 50, 254 24 39, (044) 230 25 14 ext.103Fax: (+044) 230 25 06

Olena Sakovych, osakovych@unicef.org

UISR after A.Yaremenko: Тel./fax: (044) 501 50 76

Olga Balakireva, PhD in Sociology, bon_smc@inet.ua

Tetyana Bondar, PhD in Sociology, bondar@uisr.org.ua Anastasiya Sudakova, a.sиdakova@uisr.org.ua 25