Putting a face to HIV in Eastern Europe

Mexico City, August 8—Wojciech Tomczynski, Board member of the “Eastern Europe & Central Asia Union of PLWH” and Chair of the Polish National Network of PLWHA “Siec Plus”, has lived the response to AIDS for 22 years. As an activist, he knows first hand the many challenges people living with HIV face in his region.

“The quality of life in Eastern Europe is not the same as in the rest of Europe,” he notes on the last day of the 17th International AIDS Conference in Mexico.

It has a lot to do with the fact that so many people with HIV come from the drug using community, which is still largely invisible and ignored, he explains. “For many using drugs means limited education and often unemployment.”

He believes that one of the biggest needs is education, focusing specifically on giving people living with HIV a chance to a life that connects them fully to society: through understanding what it means to live with HIV, and through the knowledge that having HIV does not mean that one’s life cannot be full and complete.

However, stigma and discrimination remains one of the biggest barriers in responding to HIV and AIDS in Eastern Europe he believes. And Mr. Tomczynski knows how true this is, as someone openly living with HIV.

“Disclosure is important,” he says, “but only for activists like me. We must show our faces, because HIV is not an abstraction. It has a face and it’s a human face.”

Access to treatment from an Eastern European perspective is still a big problem for Mr. Tomczynski. “Figures are quoted that state that 90 percent of people in this region have access to treatment, but what the figures don’t say is that in many countries, such as the Ukraine for instance, the range of medication is very limited.”

“And what about people living in small villages in rural Russia? How easy is it for them to gain access to a doctor and treatment, where intolerance and stigma is still very much alive?”

Mr. Tomczynski believes that positive prevention is a crucial component of the AIDS response, and one that takes into account the experiences of different communities of positive people. He notes that there are lots of lessons to learn about the social, political and human rights aspects in responding to HIV. “Positive prevention started in my country, Poland, many years ago, when in the mid-90s we held national meetings of positive people.”

“We have learned much,” he says. “I remember when everyone told us we could not have children. Today we know better—that people living with HIV have the right to a full and safe sexual life: a universal human right.”

People living with HIV can be very alone, he adds, saying that “we have come a long way in our response, providing the space for people to connect and share their experiences.”

“This is why NGOs such as ours and AIDS Action Europe, and the partnerships we have, is so important, because the struggle is still a long way from over—even after 27 years of knowing this epidemic.”

 His biggest concern is the rates of transmission, which shows increases after the year 2000 in some regions and with some key populations. “Why are there so many new transmissions recorded when we have spent so much money on prevention?”

Mr. Tomczynski acknowledges the changing face of HIV is also something that should be taken into account. “In the beginning HIV [in a sense represented] drug users and gay men. Now, it would seem that the majority of cases are in the heterosexual community. Overall, 600 new cases are documented in Poland alone each year,” he notes.

Access to treatment for migrants and immigrants are also of particular concern, as these individuals often don’t have recourse to the necessary funds or insurance to qualify for access to treatment.

“This is where NGOs such as ours can help,” he says, explaining that cooperation and good relations with the authorities go a long way in allowing them to support individuals from places as far away as Cameroon, the Congo, and as close as Ukraine and Russia.

“But most important of all is that we recognize the humans we work with,” Mr. Tomczynski he concludes. “I have been living with HIV for over 20 years. I am not an abstraction. I am human.”

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Advocating for changes to the legal system to protect PLHIV in India and China

Mexico City, August 8--Advocates, including people living with HIV (PLHIV), from the Asia Pacific region, are working with the Asian Pacific Council of AIDS Service Organization (APCASO) to improve the quality of their lives, and those of other marginalized communities. 

In India, the National AIDS Control Organization of the Ministry of Health invited the Lawyers Collective (LC), an organization of lawyers advocating for increased human rights for PLHIV and other marginalized communities, to help draft the content of a national HIV Bill in 2002.  Two years later, LC presented an initial bill to the Health Ministry, which was in turn submitted to the Ministry of Law for final revision and presentation in the House of Parliament.  In the following two years, LC led national consultations with civil society and used the results to amplify the recommended bill.  The advocates decided to introduce the new components of the bill under the original name of the bill presented in 2004, to increase its chances of being tabled and accepted by Parliament.  The amendments had been approved by the National AIDS Control Organization and were submitted to the Law Ministry. LC and the Indian Network for People Living with HIV (INP+), along with other activist organizations, continue to pressure the Ministry of Health to encourage the Law Ministry to present the amended, comprehensive bill to the House of Parliament.

APCASO shared this information under the banner of Legalizing the Epidemic in Asia and the Pacific with activists during the 17th International AIDS Conference in Mexico. 
The panel of activists included: Jia Ping, an HIV and Human Rights Lawyer with Global Fund Watch; Malu Marine, Executive Director of ACHIEVE, an NGO working in support of PLHIV in the Philippines; Daisy David, Greater Involvement of People Living with HIV or AIDS (GIPA) Advisor of the largest PLHIV network in Asia; and UN Health Rapporteur, Anand Grover, who is also a member of ICASO’s board. They presented the work done by the activist organizations on anti-discrimination and HIV legislation and improvements to the justice systems in India and China.

Mr. Grover highlighted several of the more revolutionary components of the expanded Indian bill.  These include a section that protects wives against possible sexual abuse from their husbands; a section that protects the rights of minors to access information, testing and treatment; a section that criminalizes discrimination based on a person’s HIV status; and a section that criminalizes any neglect or denial of services to PLHIV in public health clinics.  The sections were designed to uphold the basic human rights of the right to life, the right to access to treatment, the right to privacy, and the right to live free of abuse and discrimination.  

Jia Ping spoke about the Chinese experience by describing the existing Prevention and Control of HIV/AIDS Policies & Regulations in China. He explained that there is a gap between the regulations and policies and their implementations.  This gap is caused by the fact that while the current regulations and policies call for the protection of the rights of PLHIV, they place the burden of implementation on the community, rather than on the law enforcement agencies.  As a result, if people living with HIV are denied treatment in a public hospital, or become victims of discrimination, the burden of proof rests with them to take legal action at their own time and cost. It can take up to ten months for cases to appear in court. Currently, Chinese PLHIV have little assistance from public prosecutors in the protection of their rights under the law. As a result the Global Fund Watch Initiative has been working with the activist community to seek appropriate interventions to change the status quo in the judicial system.      

During and after the discussion, conference delegates signed a solidarity banner, which activists, led by members of the INP+ later paraded around the Global Village collecting more signatures of support.  Indian and other APCASO activists then displayed the banner at the entrance to the satellite session, “India’s Response to HIV/AIDS: Lessons Learned,” advocating for the bill’s passing.  The Minister of Health of India, Dr Anbumani Ramadoss, who was the main speaker, committed his support for the bill to the AIDS activists and others attending the session. During the session, activists asked the minister to describe the current status of the bill. He responded that the bill has been with the Ministry of Law for the past eight months and that his ministry is advocating that the Law Ministry present the bill at the next session of the house of Parliament, in a few months.

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Progress and Challenges: A Mexican Perspective

By Martin Cuellar, ICASO

Mexico City, August 7, 2008—During the opening ceremony of the XVII World Conference on AIDS Sunday night, August 3, 2008, President Felipe Calderon of Mexico announced his government’s commitment to creating more universal access to free ARV treatment, and to boost the budget for prevention. Mexico was also applauded repeatedly during the opening ceremony for being the first country in the region to criminalize acts of homophobia.  Even though Mexico has reached these milestones, the there is still a long road ahead. The primary challenges have been mapped by activists such as the director of Mexico’s National AIDS Program, Dr. Jorge Saavedra.

Dr. Saveedra, who presided over the Jonathan Mann Memorial lecture at AIDS 2008, said that the men who have sex with men population cannot be blamed for the epidemic in countries where HIV and AIDS is concentrated among that group. He also said that one of the first things that need to happen is to end the stigmatization of this group of men, whose sexual practices are still penalized in over 80 countries.

In Mexico, dozens of non-government and community-based organizations continue to provide sexual education, innovative prevention interventions and to fight for human rights for those affected by HIV, to stem the rate of transmission in Mexico and to mitigate the effect of HIV.

One such organization is AVE of Mexico—a partner of ICASO—whose senior consultant and past executive director, Carlos Garcia de Leon, (ICASO Board member) shared his perspectives of the response to AIDS in Mexico.

Question: Why do you think Mexico has its current prevalence of HIV transmission rates?

Carlos Garcia de Leon: We don’t have a national HIV strategy that brings together Government, the NGO community and the academic community.  We also have a long way to go to get the media to take ownership of the struggle as partners in the response to HIV.  We need more sexual education for men who have sex with men (MSM).  More than 52 percent of the HIV+ population is MSM, and more than half of new infections are happening to Mexicans under 25 years old and to women.  It must be noted that in Mexico, HIV is tied to stigma and discrimination. The fear of humiliation and rejection is keeping many Mexicans from getting tested. Though there is a law protecting individual’s right to privacy, many private companies and employers demand the results of HIV tests for potential employees and refuse to hire anyone who tests positive.

Question: What is your vision for mitigating HIV and decreasing transmission in Mexico?

Carlos Garcia de Leon: Mexico needs a national strategy that combines the efforts of the media along with those of the government and NGO community. Recently, a representation of civil society met with President Calderon to start the process toward a national strategy. With such a strategy we can look forward to the government improving the training of public doctors and implementing the anti-discrimination law. We need to achieve better prices for ARVs until they become truly free and accessible. Finally, Mexico is in real need of anti-stigma and discrimination campaigns and sexual health education.

Question: What are the major response mechanisms operating in Mexico today?

Carlos Garcia de Leon: We currently have 35,000 people on ARV treatment. Every year more health centers are improving their response and services. While treatment is increasingly available in the big cities, we have a long way to go to provide universal access especially in the rural communities. 

Question: What is your organization doing as part of the national response?

Carlos Garcia de Leon: Ave de Mexico focus on prevention, advocacy and sexual health for PLHIV or those who have a sexually transmitted infection. We conduct educational outreach to the MSM community providing voluntary counseling and testing (VCT) services with counseling, training to prevent re-infection and psychological support.  We run a youth group, a discussion group and conduct skills training for young volunteers.

Panelists explained that positive prevention methodologies came from the PLHIV community, who seek to remove their labels of "victim." This is done at several levels. First, by ensuring that PLHIV understand how to protect themselves against re-infection and co-infection. Secondly, positive prevention ensures that PLHIV do not reduce the quality of their lives by denying their sexual needs. Rather they are encouraged to enjoy their sexual lives in healthy ways protecting themselves and their partners from transmission. Thirdly, positive prevention prescribes the establishment of living environments free of discrimination where PLHIV can make the same choices HIV- individuals make, to increase the quality of their lives. The press conference allowed the media to hear innovative ways in which these goals are being met in countries like Botswana, India, China and Kenya.