All-Ukrainian Network of People Living with HIV in Action
2001
2012 -
The biggest organization of patients in Ukraine
2012
ÂŤIt is in our lives, and not from our words, that our religion must be read!Âť Thomas Jefferson
Network at the National level:
• National Council on TB and HIV/AIDS – CCM • Cooperative Agreements with MoH, MSP, MoE, SPS
Network at the International level:
• The Global Fund to Fight AIDS, Tuberculosis and Malaria • The Global and European Networks+ • European Council
Network at the International level:
UNAIDS secretariat and co-sponsors (WHO, UNICEF, UNDP, ILO, UNODC), UN Women Bilateral donors – i.e. USAID implementers meetings
Growth of professionalism
• From crisis actions to partnership with government
Growth of influence in Ukraine
• PR of GF grants • Reduction of medicine prices
Networking
• One of the most influential organizations in Ukraine and worldwide (Toronto, Vienna, Mexico, Washington)
Network at glance • 43 affiliates in Ukraine • 550 active members • 50 000 adults and children benefited semi-annually 2006 - “Red Ribbon” Award winner as the best organization worldwide in the fight with stigma and discrimination against HIV-positive people Co-implementer of National AIDS Programme
Map of care and support services for adults on ARV treatment
Map of care and support services for children affected by HIV
Campaigns to increase access to treatment 2011 – All-Ukrainian advocacy campaign "Help to Survive!" to ensure full funding of ARV treatment in the State program on HIV/AIDS in 2012
Results • President of Ukraine officially requested the Prime Minister of Ukraine to prevent the spread of HIV/AIDS in Ukraine and ensure access to health care for patients with HIV/AIDS in Ukraine. • 234 million UAH were allocated in the State Budget for 2012 to purchase ARV treatment.
• By the end of 2012 treatment of 42 000 of patients was supposed to be funded from State budget • Broad media coverage
Campaigns to increase access to treatment
2012 – Advocacy campaign “Deputy – Altruist" to allocate 1 billion UAH in the State Budget for 2013 for treatment of HIV/AIDS, tuberculosis, and hepatitis.
Results In December, 2012 President of Ukraine signed the order for Ukrainian government and regional administrations: - to provide access to medical care for patients with tuberculosis, HIV/AIDS and hepatitis; - to prepare the project of state budget changes ensuring funding of interventions on prevention and combating tuberculosis, HIV/AIDS and hepatitis based on results of first quarter 2013 and patient’s needs; - to develop a National program on prevention and treatment of HIV, care and support for patients with HIV/AIDS for the period of 2014-2018.
Campaigns to increase access to treatment 2013 – All-Ukrainian protest “Line for Life" to abolish the Ukrainian Law on licensing of imported medicines that imposed additional license to import medicines to Ukraine and certificate of quality for 30 000 UAH for each bulk of imported drugs.
Results Cabinet of Ministers of Ukraine made a decision to simplify licensing procedure based on the application of pharmaceutical products suppliers.
Changing the double standards of pricing - 2012 • 3 times price difference for generic drugs offered by Indian pharma to the State and NGOs • Network made negotiation and awareness campaign • donation to MOH for about $1 million, which additionally covers treatment of 1,900 people
As a result of Network’s advocacy 2012 State Budget allocated $29 mln on ARV
842 times more than in 2003 40 350
27 542 22 016 15 871 10 692 7 657
8
22
55
250 1 052
2 713
4 777
2000 2001 2002 2003 2004 2005 2006 2007 2008 2009 2010 2011 2012
2016 Strategy
2010
2012
2016
Ensure ARV treatment for every PLWH in Ukraine
Objectives Timely delivering of the appropriate ARVs Improving access to HIV medical follow-up Ensuring access to medical care in general
Enabling supportive environment Promoting tolerant attitudes toward PLWH Organizational development
Our 2020 goals • ART is provided for all PLWH in need – 2014-2018 NAP draft foresees treatment provision for132,000 HIV+
• Medical services are supported by strong social component (lifelong treatment, adherence to medical care and ART particularly, support for patients with co-infections – TB, HBV, HCV) • Medical & social services for PLWH are funded by the Ukrainian government • Medical care for PLWH are available in non-specialized facilities
Our 2020 tasks • Network is a strong and experienced advocate for PLWH rights both at national and regional level • Network mobilizes communities of vulnerable populations • Network is acknowledged by stakeholders, particularly government, as a strong partner in the HIV/AIDS field and expert organization that can propose justified and evidencebased approaches in overcoming the epidemic • Network has regional branches in all regions of Ukraine • The structural units are providing services directly for PLWH and affected populations, thus we know their needs and can shape our programs based on their needs
Key stakeholders • President of Ukraine • Verkhovna Rada (the Parliament) • Government (MoH and other Ministries) and state authorities at regional level • UN family and international organizations • National NGOs, other patients’ and advocacy groups • Big Pharma
Main constraints • Political instability in the country • Risks regarding criminalization of HIV and vulnerable groups (criminalization of IDUs, CSW, anti “homosexual propaganda” law) • Insufficient state funding of HIV/AIDS response • Corruption, lack of political will • High level of stigma and discrimination towards HIV+ patients in the society and medical facilities
Challenges • Inadequate ART coverage (WHO estimation - 120 000 in need of ART) • Low access to medical care in prisons - Lack of state funding - Low technical capacity of the penitentiary service • Lack of technical skills: – how to avoid drug shortages, tender delays, – how to ensure link between treatment sites, buffer stock
Challenges facing NGO leaders in regions • High level of stigma, discrimination and self-stigma. • Limited access to services in country side and small towns. • TB/HIV co-infection including MDR TB • No social services commissioning by State. IDUs – restrictive legislation, limited access to HR and ST especially SWs and MSM – Not recognized as a group vulnerable to HIV, were not included in the national program of 2008-2013. Former prisoners – Lack of re-socialization centers, lack of social support and referral mechanisms upon release from prison. PLWHA – Lack of funding from local budgets (opportunists treatment, test systems, inpatient treatment)
The issues we would like to address 1. On this year’s bidding procedure Prezista 300 mg and Intelence are proposed to MoH Ukraine at 4,69 USD/tab and 4,38 USD/tab. It is 2nd and 3rd the most expensive ARV that will be bought this year by MoH Ukraine. 2. MSF price for DRV (0.55 USD/tab) and for ETR (0.30 USD/tab) is 8,5 times and 13,6 times lower than Ukraine’s price respectively;
3. High pricing was explained by fear of parallel importing from Ukraine to highly-priced Russian market; 4. The current access program of J&J only enables sale of generic DRV in Sub-Saharan Africa and LDCs, and there is no licence on ETR; 5. There are currently 113 users for DRV in Ukraine, 9 users of ETR and none of riplivirine (ECUO)
Questions 1. What is the J&J structure and relationship between J&J and Janssen
2. What is the opportunities proposed by J&J for Ukraine 3. Does J&J consider any mechanism of making its drugs more affordable in Ukraine (e.g. Abbott’s Kaletra/Aluvia branding scheme)? 4. Is there any plans of launching STR or FDC for new products? 5. Is there any plans of launching access program for Ukraine or entering into negotiations with the Medicines Patent Pool and inclusion of Ukraine in the scope of J&J-MPP license?
Thank You! All-Ukrainian Network of PLWH 87 "Đ’", Mezhyhirska St., Kyiv, Ukraine 04080 Tel: +38 (044) 467 7567; 467 7569; 467 7584 Fax: +38 (044) 467 7566 http://www.network.org.ua https://www.facebook.com/All.Ukrainian.Network.of.PLWH