About STEP-UP

STEP-UP: Skills Training to Empower Patients

STEP-UP: training a new generation of empowered HIV activists to:

EDUCATE their local communities about HIV to reduce stigmatisation and isolation of PLWHIV

EMPOWER PLWHIV to share their voice on clinical and policy decisions impacting HIV services

CONFIDENTLY COMMUNICATE the importance of proactive engagement of PLWHIV with government, health authorities and national and international organisations

GATHER SUPPORT to launch local initiatives that can help break down barriers to accessing testing, treatment and care

The STEP-UP programme is a yearlong modular training programme designed to provide HIV education and personal development training to people who have an aspiration to become more active in the work of and for HIV communities in Europe and Central Asia. The aim of the bilingual programme (English and Russian) is to equip a cohort of 20 HIV ambassadors with the knowledge and skills they need to advocate for the best HIV practices.

 

Specifically, the objectives of the STEP-UP programme are to:

  • Enable trained activists to apply acquired skills to confidently engage in dialogue with researchers, policy makers and industry to advocate for universal and uninterrupted access to treatment and prevention of HIV/AIDS and related co-infections at national and international level

  • Support and enhance capacities, treatment and advocacy strategies of local, regional and national HIV community-based organisations across Europe

  • Further promote the adherence to HIV treatment, care, support and prevention in Europe by increasing treatment literacy and advocacy of people living with HIV (PLWHIV) and groups at risk, their supporters and consequently national organisations and health entities, with which they are affiliated

  • Reduce stigma, health inequalities and discrimination towards people living with HIV

 

The STEP-UP programme is designed for people living with HIV/AIDS, their health care providers, civil society representatives and other professionals who work in the field of advocating for the universal access to HIV/AIDS treatment, care and prevention. We expect the trainees to have a fairly good understanding of HIV and related co-infections and have a personal aspiration to go in depth and increase their knowledge and capacity on the topics addressed by the programme. STEP-UP graduates should assume a leading role in advocating for universal access to prevention and treatment, fighting stigma and discrimination and increasing understanding and acceptance of HIV in their country and at international level. Half of the trainees will come from Western/Southern/Northern/Central Europe and half of the trainees from Eastern Europe and Central Asia.

 

The programme consists of five modules that will run across five weekends in 2018 and 2019 starting with the programme launch in June 2018.

The five modules of the programme will take place on the following dates:

The training modules will cover the following topics:

 

Prevention and testing

  • Community role in testing (role of community and advantages of community involvement, community-based testing, testing strategies and technology, STI testing)

  • Barriers to testing (overcoming legal and regulatory barriers as well as barriers related to stigma and discrimination, outreach strategies)

  • Prevention (combination prevention, different prevention needs of different groups of people, Harm Reduction, biomedical prevention, treatment as prevention, availability and advocacy for PrEP)

  • Antiretroviral therapy (treatment guidelines, standards of care, adherence/preparedness to treatment, benefits of antiretroviral therapy on individual level and for public health)

 

Advocacy for access to treatment

  • Human rights and right to health (introduction to human rights, key institutions and documents in human rights area, available mechanisms for the protection of human rights)

  • International framework for advocacy (international institutions in the HIV field and their role, current international processes, key documents and agreements)

  • Instruments to promote access to treatment (available instruments for community organizations to monitor access and affordability in their national context, mechanisms to procure drugs, intellectual property and pricing, generics, compulsory/voluntary licensing)

Treatment, R&D and long term management of health

  • Process of medicine development

  • Clinical trials and clinical trial protocols

  • Advocacy for the needs of people living with HIV in clinical research (reporting of side effects, endpoint definition, inclusion/exclusion criteria, assessment of inferiority and superiority in drug development, topics that are not well-enough addressed in clinical research, community representation in clinical research)

  • Statistics in clinical research (meaning and significance of values used in clinical research)

  • Legal framework for research (legal framework existing for clinical research and elements contradicting the interests of people living with HIV, guidelines for biomedical research, drug registration and approval in different regions)

  • Tuberculosis and viral Hepatitis (diagnostics, treatment and advocacy for treatment access)

  • Interrelation between ageing, comorbidities and treatment (standard of care, quality of life, preventive care, research and policy needs, role of community)

National strategy and advocacy instruments

  • Special needs of special population groups (addressing specific barriers for access to treatment and prevention services for migrants, women, transgender community, drug users, sex workers and prisoners)

  • Treatment cascades and the use of treatment cascades as advocacy tools

  • Patient reported outcomes in HIV

  • Epidemiological methods and concepts

  • Setting-up community advisory boards

  • Psychosocial issues of HIV

Looking ahead – how to end AIDS by 2030  

  • Stigma and discrimination (tools and evidence-based campaigns against stigma and discrimination)

  • Criminalization of HIV

  • Relationship between healthcare professionals and community (hierarchy, power relations, time management, eHealth and data protection, integrated care and collaboration with other disease areas)

  • How to end AIDS by 2030 (upcoming treatment-related challenges in the next years, role of the community, HIV cure, HIV drug pipeline)

 

In order to get an impression about STEP-UP, please watch the following videos about the previous editions of STEP-UP:

This initiative has been independently developed by EATG, and was made possible through sponsorship from Gilead Sciences Europe Ltd and ViiV Healthcare Europe Ltd. EATG acknowledges that neither Gilead Sciences Europe Ltd nor ViiV Healthcare Europe Ltd have had any control or input into the structure or content of the initiative.

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