Living with HIV

01 Jan 2009

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New UNDP report calls for greater integration of people living with and affected by HIV. Discrimination and the social exclusion of people living with HIV are undermining efforts to respond to AIDS, according to a new report “Living with HIV in Eastern Europe and CIS: The Human Cost of Social Exclusion”, which was released by the UN Development Programme (UNDP) in conjunction with both World AIDS Day and the 60th Anniversary of the signing of the Universal Declaration of Human Rights.

New Horizons - The report draws on data from six countries including Turkey. According to the findings of the report, the number of people living with HIV in Turkey has been increasing. The first AIDS case in Turkey was officially reported in 1985. According to data from the Turkish Ministry of Health (MOH), the total number of reported HIV cases in the period between 1985 and 2006 is 2,544.

However, the actual number of HIV cases remains unclear. It is likely to be higher than the official number of reported cases, due to low numbers of Voluntary Counseling Testing (VCT) Centers nationwide, inadequate rates of testing and a long asymptomatic period whereby HIV infection can remain undetected.

Most of the people with living HIV in Turkey are male (69%) and the percentage of females is relatively low (31%). According to MOH data, the main mode of transmission is heterosexual sexual intercourse (1343 recorded infections), followed by men having sex with men (MSM; 207 infections) and injection drug use (IDU; 120 infections). However, the mode of transmission in many reported cases is unknown (599) suggesting that these figures need further analysis.

HIV is not yet seen as an important health problem in Turkey due to the low number of people living with the disease. However, there are several risk factors related to the increasing spread of HIV in Turkey that should be taken into consideration. Sex work is considered to be the major driver of the epidemic in Turkey. It is also important to note that sex workers from Eastern Europe and the former Soviet Union come to Turkey on tourist visas and work as sex workers.

Although the first AIDS case was reported in 1985, HIV has not been regarded as a priority in national policy. Three commissions for HIV-related issues have been established: the High AIDS Commission in 1987, the AIDS Counsel Board in 1993, and the National AIDS Commission in 1996. Since 1987 serologic tests have been compulsory for blood and organ donors and registered sex workers, and since 2002 HIV testing has been required for couples before getting married. All health centers that perform HIV tests report their test results to the MOH. In 1994 HIV was included in the coding system of communicable diseases.

In the Constitution of Turkey, there is no clear reference to allow people living with HIV (PLHIV) to make full use of their fundamental rights and freedoms. Stigmatization and discrimination are now widespread in Turkey, making key populations at higher risk hard to reach and targeted prevention activities difficult to implement. There are no specific legal arrangements addressing the educational rights of children living with HIV and Turkish law does not currently address discrimination against PLHIV in the workplace. All aspects of treatment and health care of PLHIV are covered by various health insurance systems (i.e., Emekli Sandığı, Sosyal Sigortalar and BAĞ-KUR) in Turkey. PLHIV are guaranteed to receive HIV-related medical treatment, including antiretroviral therapy (ART), which is provided free by the state.

Non-governmental organizations (NGOs) are the most active and devoted national stakeholders in the process of addressing HIV in Turkey. The scope of their activities is limited, however. Most engage in advocacy and information, education and communication (IEC) activities, such as publishing educational materials or conducting training programmes for adolescents, students, the general public, and specific key populations at higher risk.

Although PLHIV are represented in almost all urban areas, most are from İstanbul, İzmir, Ankara and Antalya. The main reason for the location of most known HIV cases in Istanbul is that individuals from rural areas who suspect that they are HIV-positive move out of their cities because they are afraid that their status will be disclosed. In addition to this problem, people living with HIV in rural areas have to travel long distances to receive treatment in bigger cities.

According to UNDP’s report on Vulnerability Assessment of People Living with HIV (PLHIV) in Turkey, the individual interviews revealed that PLHIV perceive high levels of stigma directed toward them and explained that the main reason is the lack of knowledge about the issue. Health professionals dealing with PLHIV also stated some institutional insufficiencies that contribute to fears of contagion among medical personnel. It is also stated that psychological treatment and support is not covered by the social security but given by physician volunteers.

The most important employment-related problem is the bureaucratic procedures of pension funds and social security. The main source of support for PLHIV is their families. They also receive support from service providers (especially infectionists) and NGOs (such as the Positive Living Association). PLHIV who contributed to the work of NGOs reported increases in their self-esteem and the problems most commonly mentioned by both the professionals and PLHIV were the invisibility of PLHIV in the country and problems such as unawareness and ignorance.

REGIONAL CONCLUSION: “THE REGION IS NOW LIVING WITH AIDS”

“The region is now ‘living with HIV’ in ways similar to individual people who live with HIV”, said Kori Udovicki, UNDP Regional Director for Europe and the CIS, during the launch of the regional AIDS report. “Just as HIV transforms the lives of people living with HIV – who must come to terms with their HIV-status, identify coping and health promotion strategies, and follow life-saving treatment regimes for the rest of their lives – so too must states and societies in the region undergo transformations in the way they care for their populations and relate to each other for generations to come”.

The region of Eastern Europe and the CIS remains one of the few areas in the world where HIV prevalence continues to rise: from an estimated 630,000 people living with the virus in 2001 to 1.5 million as of 2007 – a 140 percent increase. Nearly 90 percent of newly reported HIV cases in the region are from the Russian Federation and Ukraine. In Central Asia and the Caucuses, the number of newly reported HIV diagnoses is also rising rapidly, with the highest incidence rate found in Uzbekistan. 

At the same time, the epidemic is ever-changing. Increasing access to anti-retroviral therapy is allowing more and more people to live with HIV as a chronic, yet manageable disease. And HIV is increasingly associated with women and children as well as men. People living with HIV now represent the full diversity of the region. Some are teachers or students, lawyers or clients, parents or children, patients or health care workers, old, young or newborn, employees, unemployed or employers. This makes policy debates around HIV more complicated, due to the multiple ways in which the epidemic affects society. As the number of people living with HIV grows, the scale of stigma, discrimination and rights violations takes on increasing proportions, serving to undermine hard-won achievements in many countries of the region and jeopardizing prospects for meeting the Millennium Development Goals.

The report draws on data with an innovative six-country research study conducted by UNDP together with Oxford University researchers and local social research institutes and organisations of people living with HIV that looked at exclusion in the health, education and employment sectors from the point of view of people living with HIV.

The report also consults the views of people representing institutions in three key sectors that, where not properly addressed, generate much of the vulnerability that people living with HIV face on a daily basis: health care (doctors, nurses and other staff), education (administrators and teachers) and the workplace (employers and co-workers). Together, these sources provide comprehensive insights into the HIV challenges faced in the region, and the need for state responses to address these issues.

The lack of basic training on HIV epidemiology, transmission and prevention, explicit biases against patients being treated for AIDS and unclear policy guidelines are among the key factors contributing to the unpreparedness of employers, educational institutions and health service providers outside of specialized AIDS centres to accept and serve people living with HIV.

According to a teacher from Ukraine: "When asked, 'Would you like your child to be in class with HIV-infected kids?' parents typically answer, 'No, it would be better to create a boarding school for them, so that they could be educated separately.' Parents are more frightened than students and children. Like parents, health care workers who have no understanding of this issue say, 'Why should the children be together?'” Yet as the report highlights, over two and a half decades of international experience has demonstrated that exclusionary approaches in any environment, whether in school, health care settings or the workplace serves no public health benefit and can only weaken the response.

The report highlights one more troubling finding: many people living with HIV fear social stigma more than the health consequences of the disease. The fear of stigma and discrimination is a major cause of reduced up-take of prevention, care treatment and support services, even when free, by people living with HIV or at risk of infection, which in turn diminishes the effectiveness of national responses.

The report concludes that rights limitations can fuel the spread of the epidemic and exacerbate the impact of HIV. Consequently, respecting people’s individual rights and improving the status of historically marginalized populations can lead to lower rates of HIV transmission, fewer health disparities in society, and improved socio-economic and human development outcomes.

The report calls for concrete efforts focused on adjusting health, social and other services to accommodate the needs of the growing ranks of people living with HIV and of populations at risk, including injecting drug users, sex workers, men who have sex with men, migrants and their spouses and partners.

“Social inclusion for people living with HIV means that we can lead longer, more productive lives as individuals and citizens, that we can better serve our families and better help prevent further HIV transmission. I think, what is good for people living with HIV and populations at risk is good for society as a whole”, said Vladimir Zhovtyak, Head of the Eastern Europe and Central Asia Union of People living with HIV, one of the organizations that contributed to the report.

The analysis was based on research conducted in Estonia, Georgia, Russia, Turkey, Ukraine and Uzbekistan, which represents the range of epidemiological situations in the region: higher-level concentrated, emerging concentrated and low-level epidemics (please click here to read the report).


WORLD AIDS DAY COMMEMORATED

United Nations Secretary-General Ban Ki-moon issued a statement on the Occasion of World AIDS Day. He expressed his views as follows:

"On this, twentieth World AIDS Day, we are at the dawn of a new era. Fewer people are being infected with HIV. Fewer people are dying of AIDS. This success owes itself to people all over the world who are taking the lead to stop AIDS. Governments are delivering on their promises to scale up universal access to HIV prevention, treatment, care and support. But this is just the beginning. There is no room for complacency. AIDS will not go away any time soon. People are still being infected with HIV faster than we can get them on treatment. AIDS is still one of the top ten causes of death worldwide, and it is the number one killer in Africa.

The challenge now is to sustain leadership. We have to build on what we have started. And we have to maintain this momentum. We have to end the stigma and discrimination that still stop so many people from learning how to prevent HIV and get treatment. And we need resources -- enough to provide services that will have a real impact in communities and on entire nations. The need to lead, empower and deliver on AIDS is as real and urgent as ever."

Recently I read about a Congolese woman living with HIV who received medicine through the United Nations.  She is now part of a group called the “hope-givers team”, which helps other families dealing with HIV. On this World AIDS Day, let us all pledge to be “hope-givers” who offer encouragement and take action to create a future without AIDS. Thank you very much.
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Kemal Derviş, Administrator of the United Nations Development Programme, also issued a statement on the Occasion of World AIDS Day. He expressed his views as follows:

"As we pause to mark the twentieth anniversary of World AIDS Day, there is some positive news. The newly released 2008 Report on the Global AIDS Epidemic indicates a drop in HIV infection rates in several countries around the world. This news should both rekindle hope and re-energize our actions.  We should, however, guard against any complacency;  the same report notes that despite progress in some countries, in others infection rates are still rising.

The theme for today's World AIDS Day Campaign is ‘Lead – Empower – Deliver’, aimed at renewing the focus on the need for universal access to HIV prevention, treatment, care and support services. Although we have made substantial progress over the past two decades in fighting the stigma surrounding AIDS, we have much further to travel before we can say with conviction that people affected by HIV benefit from full rights and protections.

Working with other UN agencies as a  co-sponsor of the Joint UN Programme on AIDS (UNAIDS), UNDP has special responsibility for addressing the connections among HIV, poverty and development, as well as  advancing human rights and gender equality. UNDP tries to achieve this in a variety of ways around the world. For example, because the spread of HIV is fueled by human rights violations and by discrimination against women, men who have sex with men, people who inject drugs, and sex workers, UNDP helps countries to enact and enforce laws to protect the rights of these groups.

In addition, recognizing the role parliamentarians play in setting and enforcing new laws and jettisoning old prejudices, UNDP has collaborated with the Inter-Parliamentary Union and the UNAIDS Secretariat to produce a handbook for parliamentarians that provides guidance on the vital role they can play in responding to the epidemic.

UNDP recognizes that no poverty reduction strategy is complete without addressing HIV;  the loss of parents and productive citizens not only affects their immediate families, but schools,  governments, agriculture and other productive sectors of societies.  In the most affected countries, the impact of AIDS can undermine national economies and considerably reduces average life expectancy. Costly treatment, absenteeism and mortality, heavily concentrated among working age adults, have a direct socio-economic impact.  Seeking to address this,  UNDP has assisted 25 countries to integrate responses to AIDS into poverty reduction strategies and national development plans.

Tackling this epidemic remains a top priority for UNDP. With strong leadership, by empowering people living with HIV, and by delivering on the promises that have already been made, there is real hope that we can turn the tide against AIDS
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