10 March 2015
We people living with HIV (PLHIV) and representatives of risk groups in Lithuania, members of the association "Pozityvus gyvenimas" (hereinafter Positive life, Association) would like to draw attention of AIDS Healthcare Foundation (hereinafter AHF) to the organization “Demetra”, which is a partner of AIDS Healthcare Foundation (hereinafter AHF). The work of “Demetra”, in our opinion, does not meet the needs of people living with HIV in Lithuania, especially vulnerable populations and does not contribute to significant improvement in quality of life of people living with HIV and constructive dialogue within the community.
We are concerned about the lack of response from the European Bureau of AHF (hereinafter the Bureau), which, in our opinion, until recently, has paid not enough attention to the suggestions of PLHIV community on improving access to prevention, care and support for HIV in Lithuania. Since 2011, the Bureau did not conduct any meetings with patients to discuss current issues, opportunities for cooperation and joint action to improve access to services involving in the process of PLHIV and members of other communities.
Association "Pozityvus gyvenimas" is an organization of PLHIV community and represents the interests of people living with HIV, including HIV-positive and other vulnerable communities. In 2003 the person infected by HIV founded the association Positive life and today, the board of the association consists of five members, three of them are community representatives. The Association and its members have membership in international networks and organizations, such as "ECUO", "AIDS action Europe", "HIV Europe", "GNP +" and others. The representatives of the Association have proven their ability and skills to defend independently the interests of people living with HIV, injecting drug users (IDUs) and other key high-risk groups, to carry out big projects, implementing such projects as projects of UNAIDS, UNODC, and joint projects of the Lithuanian government and foreign funds. In 2013 the Association was a social partner of the Government of Lithuania during Lithuania's chairmanship of the European Union, and organized the Forum "EuroHIV 2013" (HIV in Europe and Neighbourhood), supported by the Ministry of Foreign Affairs, in partnership with the "Eastern European and Central Asian Union of PLWH" (ECUO). Unfortunately, the European Bureau of AHF did not participate in this important event and did not discuss the issues, problems and optimize joint actions in the fight against HIV. (http://www.eurohiv2013.eu/en/)
According to official data of the national "Center of AIDS and infectious diseases” (www.ulac.lt) until December 2014 2350 HIV-infected persons were registeredin Lithuania . In 2013 anti-retroviral (ARV) treatment was received by 407 patients, 54 patients discontinued treatment, which is more than 13 percent of the total number of people receiving ART in Lithuania. Almost a quarter (563) of all HIV-infected live in Klaipeda region where HIV specialist works one hour and a half two days a week, other specific support services for people living with HIV do not exist. A similar situation exists in Vilnius, where the organization "Demetra" works.
In Lithuania, to our regret, services of peer counselors, despite the exit of patients from ARV treatment programs are not provided, adherence work with HIV-positive patients is not conducted, and is not funded. We would like to draw the attention of AHF to this fact and to call for dialogue in order to change this situation for the better.
Services provided by the "Demetra" are needle exchange and provision of prevention means for drug users, they are only available in Vilnius office of organization. Activities of "Demetra" in express testing area are mainly distributing rapid tests for medical offices and data collection.
In our opinion, control of quality counseling, further confirming laboratory examination, control of retention in the medical system of HIV-positive patients are not carried out properly. We also note that for us as for the patients it would be important to develop such area of activities as community based testing in our country.
“Demetra” has organized several actions of rapid HIV testing in a mobile point of testing. However, in our opinion, the data of testing, that was provided by organization “Demetra” cannot be true, based on our extensive experience of mobile testing, we are ready to cast doubt on the fact that the number of tests conducted in one mobile office was about 50 per hour, which is impossible in practice.
Under the auspices of AHF ”Demetra” have made several advertising campaigns in Vilnius, during which, in our opinion, condoms were distributed without regard to the specifics of spread of HIV infection, methods of distribution did not meet the needs and could not reach the most vulnerable groups, those who need them most. Condoms provided by AHF also did not reach many communities (PLHIV, IDU, MSM, etc.) in other regions of Lithuania, where the spread of HIV is higher than in Vilnius, for example, the organization "Demetra" did not deliver them to Klaipeda, which is home to nearly a quarter of all people living with HIV Lithuania. In our view at the moment we face the irrational use of the AHF funding, since the campaigns and distribution of condoms does not reach beneficiaries from vulnerable groups most in need -.
Based on the material above, we ask the board of directors of AIDS Healthcare Foundation to consider our appeal, and take the following actions:
- Organize a meeting of representatives of the Board of AIDS Healthcare Foundation, the European Bureau of AHF and representatives of all communities of Lithuania to discuss the level of customer satisfaction with the services provided, to discuss existing problems and gaps in the services provided, to establish a constructive cooperation between the organizations providing services and community organizations of PLHIV and other vulnerable groups, and independent patients and activists.
- Take the necessary steps to improve the services provided by the organization “Demetra”. Namely, to make the services aimed at vulnerable HIV populations; to develop a more rational scheme of distribution of condoms; to initiate the establishment of services for people living with HIV in treatment, in order to avoid loss of patients from treatment programs.
- Take necessary actions in order of better control of the use of funds and quality of services improvement to ensure the participation of community organizations in the implementation and provision of services of prevention, counseling, care and support, which financed from the
We thank the AIDS Healthcare Foundation for its contribution to the global policy to prevent the spread of HIV and improve the quality of life of people living with HIV worldwide. We hope that honesty and openness are the basic principles that guide the AIDS Healthcare Foundation, and we can look forward and hope of a comprehensive review of our Appeal.