Pediatric HIV/AIDS Strategy in Ukraine Meeting (Jan. 2006)

Ukrainian Ministry of Health
United Nations Children’s Fund Office in Ukraine
The Regional Knowledge Hub for the Care and Treatment of HIV/AIDS
American International Health Alliance
Canadian Society for International Health

Meeting:

Pediatric HIV/AIDS Strategy in Ukraine:
Development of Comprehensive Care Model and Human Capacity Building Plan

KMAPE, conference room, 9 Dorogozhytska Street, Kiev, Ukraine
09:30–17:00; January 24, 2006

 

MEETING MINUTES

 

Participants:

  • Raisa Moiseenko, Ministry of Health of Ukraine, Director of the Department for Organisation and Development of Health Care for the Population
  • Olga Kovalenko, Ministry of Health of Ukraine, Chief Specialist
  • Lyudmila Storozhuk, Ukrainian National AIDS Center, Deputy Director
  • Oksana Soldatenkova, Ukrainian National AIDS Center, Consultant
  • Svetlana Komar, Ukrainian National AIDS Center, Consultant
  • Tetyana Tarasova, UNICEF/Ukraine, HIV/AIDS Projects Officer
  • Lidia Andrushchak, UNAIDS/Ukraine, Social Mobilisation and Partnership Adviser
  • Tatiana Perepelitsa, International HIV/AIDS Alliance in Ukraine, Treatment Department, Chief Specialist
  • Yuri Voronenko, KMAPE, Rector
  • Nina Goyda, KMAPE, Vice-rector
  • Janet Hatcher Roberts, Canadian Society for International Health, Executive Director, Positive Children Project in Ukraine
  • Louise Binder, Canadian Society for International Health, Positive Children Project in Ukraine, Chair of Advisory Committee
  • Stanley Read, Canadian Society for International Health, Positive Children Project in Ukraine, Consultant; Division of Infectious Diseases, Hospital for Sick Children Toronto, Director of HIV/AIDS Family Centered Care Program
  • Marnie Davidson, Canadian Society for International Health, Positive Children Project in Ukraine, Project Coordinator
  • Cheryl Arneson, Canadian Society for International Health, Positive Children Project in Ukraine, HIV Nurse Consultant
  • Geoff Black, Canadian Society for International Health, Positive Children Project in Ukraine, Project Coordinator
  • Maryna Murashova, Canadian Society for International Health, Positive Children Project in Ukraine, Project Coordinator
  • Svetlana Alekseenko, Canadian Society for International Health, Positive Children Project in Ukraine, Project Manager
  • Igor Semenenko, JSI MCH Project, PMTCT Coordinator
  • Alyona Gerasimova, HOLT International, Country Director
  • Ella Skibenko, HOLT International, Program Manager
  • Anna Shapoval, Doctors of the World, MAMA+ Project Director
  • Lyudmila Chernychova, KMAPE, Head of Children Infections Chair
  • Nancy Calles, HIV Education and Research Coordinator, Baylor College of Medicine, Baylor International Pediatric AIDS Initiative>/li>
  • Alexander Terentiev, Bristol-Mayers-Squibb, Regulatory Affairs manager
  • Natalia Kravchenko, Bristol-Mayers-Squibb, Business Coordinator
  • Eliot J. Pearlman, International HIV/AIDS Institute, Head of Board
  • Lyudmila Dmtrieva, International HIV/AIDS Institute, Project CoordinatorElena Voskresenskaya, AFEW/ Ukraine, Regional Director Svetlana Antonyak, Head of HIV/AIDS Clinic, Institute of Epidemiology and Infectious Diseases
  • Vera Pavlyuk, Ukraine 3000 Foundation, Program CoordinatorGaurav Bhattacharya, Clinton Foundation
  • Michael Burtov, Clinton Foundation
  • Trudy Larson, HIV/AIDS Regional Knowledge Hub, Pediatric AIDS and PMTCT Consultant
  • Olga Kostyuk, Regional Knowledge Hub, Medical Advisor
  • Andriy Styopkin, Regional Knowledge Hub, Program Coordinator
  • Grygory Naumovets, Regional Knowledge Hub, ICT Coordinator
  • Zoya Shabarova, AIHA/Regional Knowledge Hub, Regional HIV/AIDS Coordinator

Facilitators:

  • James Smith, AIHA, Executive Director
  • Tetyana Tarasova, UNICEF/Ukraine, HIV/AIDS Projects Officer

Interpreters:

  • Elena Bukreeva
  • Vladimir Izotov

Agenda:

9:00-9:30 Registration and coffee.
9:30-10:00

 

Opening and welcome greetings.
  • Ministry of Health of Ukraine
  • UNICEF
  • CSIH
  • Regional Knowledge Hub/AIHA
  • KMAPE
10:00-10:30

 

Current situation on pediatric HIV/AIDS in Ukraine, main results and related challenges of providing diagnosis, treatment, care and support to children with HIV/AIDS.
  • Raisa Moiseenko, Ukrainian Ministry of Health (MOH), , Director of the Department for Organisation and Development of Health Care for the Population
10:30-11:00

 

Intersectional cooperation to address continuum of care to children with HIV/AIDS from medical, psychosocial and educational perspectives.
  • Tetyana Tarasova, UNICEF/Ukraine, HIV/AIDS Projects Officer
11:00-11:15 Coffee break
11:15-12:05

 

Current situation with scaling up of pediatric ART, main results and challenges. Projects on pediatric HIV/AIDS funded by GFATM program in Ukraine for 2005-2007
  • Children and HIV, Svetlana Komar, Ukrainian National AIDS Center, Consultant
  • Provision of Services for Children living with HIV in the Framework of the Program “To Fight HIV/AIDS Epidemic in Ukraine” supported by GFATM, Tetyana Perepelytsya, International HIV/AIDS Alliance, Ukraine, Chief Specialist
12:05-12:20

 

Human capacity building needs of Ukrainian health care workers on pediatric HIV/AIDS care and treatment: state of art report and remaining needs.
  • Pediatric HIV/AIDS Related Capacity Building Activities of the Regional HIV/AIDS Knowledge Hub, Olga Kostyuk, Regional Knowledge Hub, Medical Advisor
12:20-12:40

 

Current pediatric HIV/AIDS projects and related activities:
  • Prevention of Mother-to-child Transmission, Igor Semenenko, JSI MCH Project, PMTCT Coordinator
  • Building a Protective Environment for Children and Families Affected by HIV/AIDS, Alyona Gerasimova, HOLT International, Country Director
  • Prevention of Abandonment of Children Born by HIV-positive mothers, Anna Shapoval, Project Director, Doctors of the World, MAMA+ Project
  • HIV Curriculum for Health Care Workers of the Middle Range, Eliot Pearlman, International HIV/AIDS Institute, Head of Board
12:40-12:45 Introduction from Clinton Foundation: Proposed activities in Ukraine.
  • Gaurav Bhattacharya, Clinton Foundation
12:45-12:50 Introduction from Bristol-Mayers-Squibb Foundation: Proposed activities in Ukraine
  • Nancy Calles, Baylor International Pediatric AIDS Initiative
12:50-13:00 Goal, objectives and project design: CIDA funded project for children with HIV/AIDS in Ukraine.
  • Children with HIV/AIDS Project in Ukraine, Canadian Society for International Health team
13:00-14:00 Lunch
14:00-14:20

 

Creating a vision for pediatric AIDS care: experience from Canada and USA
  • Canada: Capacity Building for the Care and Treatment of Children with HIV/AIDS, Stan Read, MD;
  • USA: Pediatric AIDS Care, Trudy Larson, MD
14:20-16:45

 

 

 

 

 

 

Round table discussion:
Where we want to go: what is the package of basic care, specialized care and psychosocial support, which need to be provided for every child with HIV/AIDS and how existing health care and psychosocial infrastructure supports this?
How will we get there: (1) How effective is the existing system of providing pediatric HIV/AIDS diagnosis, treatment, care and support; what are the main challenges faced by the health care system to provide pediatric ART; and to insure intersectoral collaboration to address medical, child development issues, psychosocial support and education for children with HIV/AIDS? (2) What are the capacity building needs and strategies necessary to support pediatric HIV/AIDS care and treatment in the future?
How do we measure getting there: How the data related to pediatric HIV/AIDS is collected and analyzed?
How do we work together: what actions are required for effective collaboration between national and international projects?
16:45-17:00 Summary of the round table discussion: consensus on main elements of framework on pediatric HIV/AIDS strategy for Ukraine.

 

Handouts distributed:

  1. Meeting Agenda.
  2. Meeting Concept.
  3. Set of Power Point Presentations.
  4. Knowledge Hub Training Course Guide.
  5. Knowledge Hub Newswire #2.

Opening and welcome greetings.

A welcoming greeting to the participants from James Smith opened the meeting. He thanked everyone for the attendance, described the purpose of the meeting, and asked the participants to introduce themselves.

 

Presentations (Morning)

After the introductions the following presentations were made prior to the lunch break:

1. Raisa Moiseenko, Director of the Department for Organisation and Development of Health Care for the Population, the MOH, to present information on the current situation on pediatric HIV/AIDS in Ukraine.

In the presentation “Overcoming the epidemics of HIV/AIDS and Its Effects among Children in Ukraine” Dr. Moiseenko stated that intensive activities to prevent the spread of the HIV/AIDS epidemics in Ukraine was started in the course of the past several years. The activities included increased possibilities of HIV testing, introduction of PMTCT program, initiation of ART, human capacity building on pediatric HIV/AIDS. One of the main challenges in the realization of the national strategy to fight the epidemics is consolidation and coordination of the efforts by medical, educational, social, legal institutions, both governmental and non-governmental.

Regarding statistics, Dr. Moiseenko said that 10,978 HIV-positive children were registered now in Ukraine, 98% of them were born to HIV-positive mothers. AIDS has been reported in 436 cases. Most of HIV-positive children are living in Donetsk, Dnipropetrovsk, Odessa and Mykolayiv oblasts and AR of Crimea. The ART scale-up program was started in August 2004 in Ukraine with the support from GFATM through the International HIV/AIDS Alliance. As of October 1, 2005, a total of 350 children have been placed on ARV therapy in Ukraine (all sources of funding for ART).

Dr. Moiseenko outlined the main challenges of care and treatment of children with HIV/AIDS. Among them are absence of sufficient infrastructure, (e.g., national referral HIV/AIDS center for children); limited diagnostic facilities; insufficient coordination and cooperation among outpatients’ departments, AIDS centers and children’s in-patient departments; limited involvement of children’s in-patient departments in the initiation of ART; insufficient level of knowledge on ARV drugs and ART treatment by medical workers; shortage of pediatricians in AIDS centers; limited experience in orphanages on how to manage children with HIV; absence of reliable information as to the level of infection among adolescents; need to further protect the rights of children with HIV/AIDS and to prevent stigma and discrimination; better coordination and cooperation of governmental, non-governmental and international organizations to overcome the epidemics of HIV/AIDS among children.

Concluding her presentation, Dr. Moiseenko recommended the further development of an action plan aimed at raising the quality of medical care and treatment to children with HIV/AIDS that would respond to these challenges and needs.

 

2. Tetyana Tarasova, UNICEF/Ukraine, HIV/AIDS Projects Officer, to discuss the intersectional cooperation to address continuum of care to children with HIV/AIDS from medical, psychosocial and educational perspectives.

Tetyana Tarasova informed the audience about the results of the projects to address Prevention of Mother-to-Child Transmission of HIV and Care for HIV-positive Children implemented by UNICEF in the framework of its comprehensive program ‘HIV/AIDS and Young People’s Health and Development’ in 2003 – 2005.

As the main outcome of the PMTCT Tetyana Tarasova identified the reduction of the level of MTCT in Ukraine from 10% in 2003 to 8.9% in 2004, which is one of the lowest in Eastern Europe. Among other key results of the PMTCT project are the development of national human capacity to prevent the HIV transmission from mother to child, development and implementation of national system of MTCT monitoring and evaluation, technical assistance to the MOH’s Department of Mothers’ and Children’s Health, broad PMTCT information campaigns, provision of the necessary equipment to a number of maternity hospitals in Donetsk oblast, development of the PMTCT training module approved by MOH of Ukraine.

Speaking about the results of another sub-project of UNICEF, ‘Care for HIV-positive Children’, Tetyana Tarasova stated that UNICEF had conducted a series of researches on the system of care for HIV-infected children. Research data showed a high need for trainings among the care givers, a high level of stigma and discrimination towards children with HIV, insufficient range of services provided to these children and their families. According to the pessimistic prognosis, the number of children living with HIV can be as high as 104,000 by 2014 in Ukraine. In response to these challenges UNICEF organized a series of public awareness campaigns for journalists, educators and medical workers on medical, social and legal issues of pediatric HIV/AIDS, as well as trainings for pediatricians, obstetricians and gynecologists on PMTCT, pediatric and adult ART training techniques.

In addition to the information on the vast range of projects conducted by UNICEF in Ukraine, Tetyana Tarasova drew the attention of the audience to the fact that Ukraine had joined the world campaign by Unite for Children – Unite Against AIDS. The main components of the campaign are prevention of MTCT, pediatric HIV/AIDS treatment, prevention of infection among adolescents and youth, support and protection of children with HIV.

Tetyana Tarasova also outlined a number of challenges to pediatric HIV/AIDS prevention and treatment. Among them are need to further develop the HIV/AIDS treatment and care system to respond to the growth of HIV/AIDS epidemics in Ukraine; need to revise the existing regulations on pediatric HIV/AIDS to protect children’s rights; absence of social standards of support to the children with HIV and their families; absence of the systematic education for medical, educational and social workers on the specifics of care and support for children with HIV and their families; limited access to laboratory diagnostics on immunology, viral load.

Many children become either biological or so-called “social” orphans when HIV-positive children are abandoned by their parents. In Ukraine, different state care institutions are responsible for the care and custody of orphans and there is neither consistency nor continuity in the provision of services for them. The efforts of different institutions need to be coordinated to ensure HIV orphans’ rights and their future health and development.

Currently, there is a lack of specialists able to provide adequate care, treatment and social support both to children with HIV and their families. The knowledge of professionals involved in the care of HIV-positive children about HIV/AIDS and HIV treatment is low. The majority of parents of HIV-positive children (i.e. those with greatest need of knowledge and skills on HIV associated care and treatment) remain beyond the scope of existing training programmes.

A further challenge is to develop and strengthen the health system, particularly maternal and child health services, as well as communities to provide appropriate care and support for those who are affected by HIV/AIDS. This goes beyond clinical care and includes a range of care and protection issues involving both health institutions and the community.

The pervasive stigma and discrimination - largely resulting from widespread fear and ignorance - hampers efforts to prevent the epidemic. The prevailing attitude of the population results in denying HIV-positive children their rights to education, their parents’ right to work and to privacy. Being diagnosed with HIV in Ukraine usually means being sentenced to social exclusion. Much more public awareness and behavioural changes are needed to ensure the right of children affected by HIV/AIDS to live in dignity

 

3. Svitlana Komar, Consultant of Ukrainian National AIDS Center - information on the current situation on pediatric HIV/AIDS care and treatment in Ukraine.

In her presentation “Children and HIV”, Dr. Svitlana Komar described the directions of the comprehensive program to fight HIV/AIDS epidemics among children, funded by Global Fund’s project in Ukraine. The program includes PMTCT, ART, prevention of HIV-infection among youth, support and care of children living with HIV/AIDS.

The early diagnostics of HIV status for children born to HIV positive women have become available since November 2005. The National AIDS Center performed PCR testing of 400 blood samples of newborns. From February 2006 the regional laboratories in Odessa and Crimea will do PCR testing to provide early diagnosis to children born to HIV positive women. Along with the statistics, Dr. Komar informed the meeting participants about the immune system testing that had become available in Kiev, Dnipropetrovsk, Donetsk, Odessa Oblasts and AR of Crimea.

In the field of the human capacity building in HIV/AIDS pediatrics, Dr. Komar outlined a series of training courses for medical and social practitioners that were provided in the framework of the project in Ukraine funded by the GFATM. She also described the clinical protocols on pediatric HIV/AIDS developed in the framework of the project in Ukraine funded by the GFATM.

Dr. Komar listed the following main problems regarding pediatric AIDS:

  • the need to have regular ARV drugs’ supply;
  • overloaded reporting system;
  • weak infrastructure of HIV/AIDS pediatric care and treatment system;
  • stigma and discrimination;
  • need to provide training of medical practitioners of the general pediatric system on pediatric HIV/AIDS;
  • absence of family education system for orphans;
  • need to develop models of support for adolescents with HIV/AIDS.

 

4. Tetyana Perepelytsya, Chief Specialist of International HIV/AIDS Alliance in Ukraine and the projects on pediatric HIV/AIDS funded by GFATM in Ukraine for 2005-2007.

In her presentation Tetyana Perepelytsya described the projects implemented with the support of the International HIV/AIDS Alliance (principal recipient of Global Fund grant in Ukraine) in 2003 – 2005.

All-Ukrainian Network of PLWHA implemented project, focused on the establishing of day care centers for children of HIV-positive parents in 5 oblasts of Ukraine. The project proved to be very successful and will continue its activities in 2006.

In 2005 – 2006 the activities covered the following main areas: trainings for pediatricians provided by HIV/AIDS Knowledge Hub and practical workshops for physicians; projects on counseling patients to ensure high level of adherence and raising the parents’ responsibility in this regard; medical and social support in the framework of the PMTCT component. In conclusion, Tetyana Perepelytsya said that the programs’ funded by the GFATM target is to provide services to 3,700 children with HIV/AIDS by October 2008.

 

5. Olga Kostyuk, Medical Advisor at Regional HIV/AIDS Knowledge Hub, to present information on human capacity building needs of Ukrainian health workers on pediatric HIV/AIDS care and treatment.

Dr. Kostyuk described the purpose of the Knowledge Hub, its founding partners, participating institutions, implementing and strategic partners. She pointed out that the Knowledge Hub’s training activities are based on national HIV/AIDS care and treatment human capacity building plan, which supports the national care strategy.

Describing the training approach Dr. Kostyuk explained selection of the target audience for trainings, faculty composition, training materials, teaching methods, quality control system, and national certification process.

Among the main results of the Knowledge Hub’s activities in HIV/AIDS pediatrics trainings in 2004 – 2005 Dr. Kostyuk listed implementation of the series of courses on ART in Pediatrics for 90 medical and social care practitioners, funded by the GFATM through International HIV/AIDS Alliance and UNICEF. As the result of successful completion of the courses 16 pediatricians received national certificates from KMAPE. Knowledge Hub is planning to continue its training programs for Ukrainian pediatric service in 2006.

Regarding the Knowledge Hub’s assessment of remaining needs in training of the pediatric care teams Dr Kostyuk identified:

  • the provision of trainings for pediatric care teams from 9 regions of Ukraine that had not participated in the Knowledge Hub pediatric courses;
  • provision of additional trainings for pediatric care teams from 6 city centers of the oblasts with the highest level of HIV infection among children (Donetsk, Dnipropetrovsk oblasts and AR of Crimea);
  • on-site mentoring and specialized professional training abroad through fellowship programs;
  • additional training for non-physicians providing care and support to children with HIV/AIDS (nurses, social workers, etc.);
  • organization of regular 2-3 day specialized trainings for pediatric care teams to update their knowledge on main aspects of HIV medicine and social work;
  • development of a pool of national trainers through provision of ToT.

Dr. Kostyuk also identified the need for additional training courses for specialized pediatric care givers:

  • HIV/ TB co-infection;
  • Neurological diseases caused by HIV/AIDS;
  • Hematological diseases caused by HIV/AIDS;
  • Cardiological diseases caused by HIV/AIDS;
  • ToT with focus on specific pediatric issues;
  • Regional trainings on monitoring of ART for pediatricians.

Based on the analysis of trainers’ and trainees’ reports and consultations with leading experts Dr. Kosyuk recommended consideration of 2-4 week clinical preceptorships in the priority oblasts by leading international and national experts. She also noted that the analysis suggested that selected Ukrainian HIV/AIDS pediatrician could benefit significantly from 1-2 month clinical training abroad at the leading HIV/AIDS clinics to learn first hand about clinical excellence on pediatric HIV/AIDS.

 

6. Igor Semenenko, JSI MCH Project in Ukraine, described the PMTCT component of the project. The main objective of this component is to increase the quality of services to HIV-positive mothers and their children.

In February 2005 JSI conducted survey on needs and available services for HIV positive pregnant women in Ukrainian maternity hospitals in 3 oblasts. The survey results show that in spite of the fact that number of HIV-positive pregnant women is increasing in Ukraine each year, the number of doctors who received specialized training on PMTCT still remains low. According to Igor Semenenko 86% of respondents do not know the main components of PMTCT. Also, the survey showed a low level of knowledge among respondents of ARV drugs for PMTCT: 50% of them do not know therapeutic regimens with Nevirapine, and 70% of them do not know the regiments with Azidotimidine. Based on survey results, JSI conducted trainings on PMTCT, child feeding, medical care of children with HIV, prevention of opportunistic infections, and psychosocial support in the target oblasts.

 

7. Anna Shapoval, Project Director, Doctors of the World, MAMA+ Project.

Anna Shapoval described DOW’s current pilot project Prevention of Abandonment of Children Born by HIV-Positive Mothers which is being realized together with the All-Ukrainian Network of PLWHA since 2005 in Donetsk, Kiev and AR of Crimea and funded by USAID.

The target group of the project is children born to HIV positive mothers and their families. The aim of the project is to build a related infrastructure in Ukraine for children born from HIV positive mothers allowing them to stay in their biological families. The project presupposes that by means of a set of services received, HIV positive mothers (biological families) will not refuse their children, and moreover, several children will return to their families from boarding schools and orphanages.

Anna Shapoval told the audience about the methods of the project and the services that are rendered to the clients that include screening to identify potential project participants, comprehensive services at home, psychosocial support, legal services, and organization of peer-to-peer groups. Concluding her presentation Anna Shapoval informed the meeting participants about the expected outcomes of the project.

 

8. Alyona Gerasimova, Country Director, HOLT International

Alyona Gerasimova started her presentation on Building a Protective Environment for Children and Families Affected by HIV/AIDS with giving the audience the alarming statistics on children deprived of parental care and families at risk. Lack of effective early abandonment prevention programs and family preservation/family strengthening programs along with stigmatization and discrimination are among the main reasons for abandonment of children with HIV and children born to HIV positive women.

The program carried out by HOLT International in Ukraine aims at development of a sustainable continuum of comprehensive services to provide family-based environment for child growth and development for children outside or at risk of being outside parental care, including HIV-affected children. The goal is addressed through a number of program areas that include family preservation, domestic adoption and foster care.

Speaking about the results of HOLT International’s activities over the last 2 years, Alyona Gerasimova said that the project was able to raise public awareness/increased community involvement, and to strengthen local capacity to deliver services to children and families. Through the grants, program supported 2 projects aimed at raising awareness and building tolerant attitudes, 2 projects to provide information, educational services and legal support, 4 projects to improve the quality of life of HIV-affected children.

The organization is planning to expand its activities to additional geographic areas and to provide access to HIV services for children deprived of parental care (street children and children in institutions).

 

9. Eliot Pearlman, Head of Board, International HIV/AIDS Institute.

In his presentation HIV Curriculum for Health Care Workers of the Middle Range, Eliot Pearlman described the project on preparing nursing staff to be able to provide high-quality, competent, compassionate care and support to PLWHA in Ukraine.

Dr. Pearlman said that nurses being the front troops of the medical care need to understand in a comprehensive multi-disciplinary and multi-sectoral manner the skills and knowledge on care and support PLWHA. Nurses are also a high at-risk group for occupational exposures and therefore should be concerned about their personal safety from exposures to body fluids, especially blood.

The project educates nurses in “Universal Precautions”. Once nurses are self-confident, then they can assume their role as patient caregivers and advocates par excellence. The project methodology is aimed at development and implementation of a sustainable train-the-trainer program for in-service and home care nurses.

Eliot Pearlman informed the meeting participants about the curriculum, target group and composition of the trainings. He said that as of now 187 health care personnel from 10 oblasts of Ukraine have been trained through the project with support from the Bristol Myers Squibb Foundation. Trainings have helped to raise greater awareness on the complexity of caring for PLWHA, the consequences and prevention of blood-borne pathogens (HBV/HCV/HIV) and use of Universal Precautions among the participants.

In addition Eliot Pearlman outlined the areas that need to be addressed in future. They are maintenance of “Fire in their bellies”, addressing and preventing “burn-out” syndrome, continued support of authorities, and overall sustainability.

 

10. Gaurav Bhattacharya, Clinton Foundation, and Nancy Calles, Bristol Myers Pediatric AIDS Initiative briefly described the activities they are considering to launch in Ukraine related to pediatric HIV/AIDS.

Clinton Foundation is planning to focus on pediatric HIV/AIDS human capacity issues (e.g., preceptorships and other clinical practice training) among their other priorities (substitution therapy, laboratory system, ARV drug price reduction) outlined in the MOU between Ukrainian stakeholders and the Clinton Foundation. The Bristol Myers Pediatric AIDS Initiative is considering to work with national stakeholders on the development of a pediatric HIV/AIDS clinic and center of excellence, based on the experience the project have in other countries in the world (Romania, Botswana, China, Malawi, Burkina Faso).

 

11. Louise Binder, Chair of Advisory Board at Canadian Society for International Health and Janet Hatcher, Executive Director at CSIH, on Positive Children Project in Ukraine

Louise Binder presented information on The Centre for Children with HIV/AIDS Project in Ukraine. She said that the project will be operated within the framework of a Canadian Response to HIV/AIDS program funded by CIDA and will be based on the following principles: (a) social determinants of health; (b) the human rights approach; and (c) the harm reduction approach. The Canadian Response to HIV/AIDS will take bold strategic action, will work in collaboration with Ukraine and other partner nations, is planning to combat HIV/AIDS in a way that recognizes, respects, and promotes the rights and dignities of people either living with or vulnerable to HIV/AIDS.

Specific strategies and best practices for managing the HIV/AIDS epidemic suggested by the projects include: managing along the continuum; multi-stakeholder cooperation; intra-, inter-, and non-governmental coordination; involvement of people living with HIV/AIDS; monitoring and evaluation. Louise Binder also presented the following 5 approaches, identified by CIDA and CSIH as most effective ones: prevention (recognizing the needs of each group, harm reduction, and focus on pregnant women), diagnosis (anonymous testing, partner notification program), care and support (equal access, focus on children), treatment, and research (evidence-based approach, ethics review, community-based research).

Janet Hatcher informed the audience about the project partners, CIDA and CSIH, and about the project objective – to strengthen national pediatric HIV/AIDS care, management and treatment capacity in Ukraine. The project suggests a number of approaches to reach the objective, which include training of Ukrainian professionals with Canadian experts from biomedical and psychosocial fields and AIDS service organizations (ASOs), internship in Canada, a possibility for several project participants to attend the 16th Annual International AIDS Conference in Toronto, Canada, and provision of logistical support to Ukrainian delegation as the host nation. The nearest project activities will include consultations and making decision on project target regions, organization of trainings in the next few months, preparation for AIDS 2006 Conference.

 

Presentations (Afternoon): Creating a vision for pediatric AIDS care: experience from Canada and USA

 

1. Dr. Stanley Read, Pediatrician, Toronto, Canada

In his presentation on Capacity Building for the Care and Treatment of Children with HIV/AIDS, Dr. Read summarized the Canadian experience in addressing pediatric HIV/AIDS. Dr. Read said that the success in treatment is based on the following factors: early diagnosis, multidisciplinary approach, correct choice of ARV drugs, good adherence, clinical monitoring and ongoing evaluation of the efficacy of the program. Dr. Read shared medical data of the rate of the 5-year survival of HIV-infected children, which optimistically depicted the fact that this rate has gone higher by 28% over the past 10 years.

 

2. Dr. Trudy Larson, Pediatrician, Nevada, USA

Dr. Larson briefly described the system of successful treatment in the United States, echoing Dr. Read’s description of the key components. She also described her experience working with children and lately adolescents living with HIV/AIDS. Dr Larson emphasized the important role of successful PMTCT programs which have resulted in virtual elimination of new cases of HIV infection among infants and children in the USA. She described how her own pediatric patients have now become adolescents through use of ART and are able to have normal life now.

 

Round Table Discussion and Summary: Moderator: Dr. Tetyana Tarasova, UNICEF/Ukraine HIV/AIDS Program Officer

Tetyana Tarasova invited the meeting participants to take an active part in the round-table discussion. The main objectives of the discussion were to summarize main challenges and needs of pediatric HIV/AIDS care and treatment in Ukraine, and to identify the most efficient ways to address them.

Based on the information presented by the participants during the previous sessions of the meeting Teyana suggested the following list of topics for discussion:

  1. Treatment and care.
  2. Psychosocial and educational development.
  3. Human capacity building.
  4. Monitoring & Evaluation.

The results of the round-table discussion are presented in the table below:

CHALLENGES/NEEDS SUGGESTED ACTIONS AGENCIES INVOLVED

I. Treatment and care

1. ARV drugs distribution

 

Optimisation of the state procurement system; identification of needs; coordination of activities; assurance of the quality of the drugs Ukrainian AIDS Center; Clinton Foundation, Ministry of Health, Ukrainian AIDS Center,
2. Overloaded reporting system Clear identification / specification of the number of HIV-positive children and those who need ARV treatment Ministry of Health, Ukrainian AIDS Center, Narcological Service, UNICEF (research).
3. Weak infrastructure to provide comprehensive care and treatment Development of the comprehensive care and treatment model on pediatric HIV/AIDS; continuation of the human capacity building program, development of efficient staffing pattern. UNICEF (learning and adaptation of latest experience); Children and HIV working group at the Ministry of Health (discussion of the model), Knowledge Hub.
4. Expansion of the categories of children who need care and treatment, HIV testing and counseling The categories should include street children, children living in boarding schools and orphanages, victims of violence, etc. Ministry of Family, Youth and Sport, NGOs
5. Stigma and discrimination Educational / training programs aimed at raising public and health and social workers awareness on HIV-positive children rights and tolerance All partners
6. Provision of specialized medical treatment to HIV affected children Development of national pediatric AIDS referral center; training of specialists on specific HIV/AIDS pediatric issues Ministry of Health, Knowledge Hub, other agencies
7. Need on regular update of pediatric care and treatment protocols Update of the protocols on a regular basis when new WHO recommendations are released. Ministry of Health

WHO

8. Need to have protocols on pediatric palliative care Development of protocols on pediatric palliative care WHO, Ministry of Health
9. Development of the concept for Ukrainian referral clinic on pediatric C&T on HIV/AIDS Organization of the clinic at the Ukrainian Hospital for Mother and Child Protection Ministry of Health
Provision of technical assistance that includes a network of 2-3 referral clinics and 1 central specialized referral clinic Canadian Society for International Health
10. Address clinical care issues for adolescents in regards with HIV/AIDS Dissemination of the UNICEF’s Youth Friendly Clinics initiative successful experience UNICEF

II. Psychosocial and educational development

1. Overcome stigma towards HIV+ children in society Dissemination of the successful experience on overcoming of stigma towards HIV positive children All-Ukrainian Network of People living with HIV/AIDS
All partners
2. Development of the approaches how to provide effective education and development of children with HIV/AIDS Introduction of issues on HIV/AIDS into the school curricula

 

Ministry of Health,
Ministry of Education and Science,
Clinton Foundation;
Bristol Myers Squibb Foundation,
3. Prevention of social orphanhood, support of family environment Building a system of support to (IDU-) mothers, ensuring their access to the existing treatment and care programs Ministry of Family, Youth and Sport, Doctors of the World, UNICEF, the MoH
4. Introduce family-oriented system to HIV orphans Continuation of related activities in the framework of the national reform of boarding institutions All agencies and organizations involved in the implementation of the reform
5. Civil control on living conditions in orphanages / boarding institutions Initiation of related activities NGOs (All-Ukrainian Network of People Living with HIV/AIDS), Ministry of Family, Youth and Sport
6. Psychological support and prevention of deprivation syndrome Ensuring civil control on the issue All agencies and organizations within the sphere of their activities

III. Human capacity building

1. Increasing the national human capacity potential Implementation of additional trainings for 14-18 pediatric care teams on pediatric ART HIV/AIDS Knowledge Hub, International HIV/AIDS Alliance in Ukraine, UNICEF
Systematic identification of additional training needs on the national level Ukrainian AIDS Center, International HIV/AIDS Alliance in Ukraine, UNICEF, HIV/AIDS Knowledge Hub, Ministry of Health
Evaluation of knowledge and performance of the multidisciplinary teams that underwent specialized training Ukrainian AIDS Center, HIV/AIDS Knowledge Hub
Possible expansion of the pediatric multidisciplinary teams, e.g. inclusion of TB specialist Ukrainian AIDS Center, HIV/AIDS Knowledge Hub, Ministry of Health
Integration of the training program on ART into the system of general medical education and post-graduate education Ministry of Health, KMAPE, HIV/AIDS Knowledge Hub, International Institute of HIV/AIDS
Continuation and expansion of the continuous educational program / practicum as one of the most efficient methods of education International HIV/AIDS Alliance, National AIDS Center, HIV/AIDS Knowledge Hub
Organization of clinical mentoring on a regular basis Ukrainian AIDS Center, International HIV/AIDS Alliance in Ukraine, HIV/AIDS Knowledge Hub, other donor agencies
Internships / twinning programs abroad (USA, Canada, France, etc.) to support psychosocial, educational and development needs Ukrainian AIDS Center, CSIH, HIV/AIDS Knowledge Hub, other partners
2. Training of pediatricians from general health care system Integration of pediatric HIV/AIDS issues into medical education institutions and system of post-graduate education Ministry of Health, KMAPE
3. Specialized training on HIV/AIDS pediatric issues Training on TB, hematology, OIs, neurology, etc. KMAPE, HIV/AIDS Knowledge Hub, donor agencies
4. Development of the national cadres of faculty Implementation of training-of-trainers courses for experienced physicians, those who will be able to conduct trainings for adults CSIH, KMAPE, HIV/AIDS Knowledge Hub
5. Training of pediatricians on the child’s growth monitoring Implementation of trainings on child’s growth monitoring on workplaces. National faculty (ToTs participants)
6. Development of cadres on child development issues Training of specialists of Centers for Social Services for Youth on psychosocial aspects of Pediatric HIV/AIDS, development of Pediatric HIV/AIDS methodological guideline for teachers UNICEF
Trainings on social support issues МАМА+

IV. Monitoring and Evaluation

1. Estimated data on the number of HIV-positive children and those who need ARV treatment is not available Assessment of number of HIV-positive children and those who need ARV treatment Ministry of Health, Ukrainian AIDS Center, UNICEF (research)
Development, pilot and revision of the patients’ database. Training of personnel how to work with the database Ukrainian AIDS Center, International HIV/AIDS Alliance in Ukraine
2. No unified system of monitoring and evaluation of children born to HIV positive women and children with HIV/AIDS, integrated in the national HIV/AIDS ME system Discussion of the problem at the National Coordination Council Ministry of Health, Ukrainian AIDS Center, UNICEF (research),
Development of the unified system of monitoring and evaluation
Data collection and integration of indicators into the national system of statistics; development of the system of case management

 

Meeting Wrap-up and Conclusion

In conclusion, Tetyana Tarasova summarized that the meeting had achieved its main objectives: (1) reviewed the current situation on pediatric HIV/AIDS in Ukraine; (2) analyzed the components needed to address the entire continuum of care needs for children with HIV/AIDS; (3) identified and discussed the related human capacity building needs and other resource requirements; (4) achieved consensus on capacity building priorities to improve the availability and quality of treatment, care and support for children living with HIV/AIDS; and (5) outlined the key elements of a comprehensive pediatric HIV/AIDS strategy for Ukraine.

Tetyana Tarasova and James Smith thanked everyone for their active involvement into the discussion and for the participation in the meeting, and adjourned the meeting.