POSITHIVE TRIPS Text by Nicola Scevola
“Is it better to have cancer or AIDS?” Izabela Voieta, an infectologist at De Menezes hospital in the Brazilian state of Minas Gerais, often hears this kind of questions from panicking patients who have just discovered to be HIV positive. Her answer is always the same: “If treated properly, today you can lead a normal life with HIV virus”.
This is particularly true if you live in Brazil, where the local government has promoted an effective treatment program that helped containing the epidemic and reducing mortality. Today Brazil fares one the best model response to HIV/AIDS in the world, but the situation wasn’t always so good. In the early Nineties, incidence rates and estimates for future developments of the disease in the country were dramatic. And the prohibitive cost of AIDS medicaments meant that only few people could afford to be treated. But Brazil's national AIDS officials learned early on that they needed to work closely with civil society in order to successfully combat AIDS.
Activists clamoring for universal access to medicines were incorporated into the AIDS program and they convinced the government to commit to the free distribution of antiretroviral medications. In 1996 Brazil started distributing free ARV drugs to HIV positive patients. Since then, a major factor in Brazil’s success has been its ability to produce several AIDS drugs locally. In order to keep the cost down, the government also started overriding patents, taking advantage of the TRIPS agreement that allows developing countries to issue “compulsory licenses” for drugs when their governments deem it to be a public health emergency.
“The national treatment program has changed my life”, says 53 year-old Reinaldo de Brito Barreto, an HIV patient who lives in Recife. “Before I had to concentrate all my energy in finding money to buy ARV drugs. Now I can live my life at the fullest again”. Brazil response was based on both humanitarian and practical grounds. Access to health care as a human right is enshrined in the Brazilian Constitution and the government is essentially forced to do whatever it can to guarantee access to medicine and health care. HIV also increases risks of acquiring opportunistic infections and the cost for treating these infections, added to the social cost caused by inability or death, can be higher than the budget spent to treat HIV patients.
Free ARV distribution also helped Brazil in halving cases of mother-to-child transmission of the virus, guaranteeing people not only the right to life but also the right to procreate. But the government treatment program goes beyond medicament distribution. Social workers, psychologists and nutritionists assist patients and help them adhering to recommended ARV regimen, essential to their survival and quality of life. Specialized centers offer cosmetic treatment of HIV-related facial lipoatrophy that helps reducing stigma associated with the virus. “We even have an outpatients dedicated to transgender patients infected with HIV,” says Emi Shimma, spokeswoman for Reference and Training Center for Sexually Transmitted Diseases and AIDS (CRT) in Sao Paulo. “People come here from all Latin America because of the quality of the treatment”.
Brazil has also vigorously invested in prevention campaigns: in 2011, the government gave away 500 millions condoms for free, 38 times the number it distributed in 1994. This has contributed to a sharp decline of HIV/AIDS cases among high-risk categories. But while treatment programs have enjoyed overall success, the same cannot be said about prevention programs. In fact, recent data indicates condom use is declining. Only few years ago, the disease was widely debated and information was constantly made available to the public. But now HIV/AIDS-related issue have virtually disappeared from public debates and the media rarely mention this topic, despite the existence of a specialized news agency based in Sao Paulo that constantly offers news about HIV/AIDS to Brazilian outlets. In the long run, experts worry that this lack of attention could worsen incidence rates, tarnishing Brazil’s success story.
“Young people don’t perceive HIV as a mortal threat anymore and they tend not to bother with protections”, says Francisco Oliveira, infectologist at the Emilio Ribas hospital in Sao Paulo. “The same thing happens with senior citizens who were not used to use condoms when they were sexually active, and are now seeing a resurgence of sexual appetite thanks to new drugs like Viagra”.
POSITHIVE STORIES: PERSPECTIVES
Pedro – retired army pilot, Sao Paulo
Pedro, 50, is gay and he’s been HIV+ since 1990. When he was infected he was working as a helicopter pilot for the Brazilian army. This happened only few months before the approval of a law that forbids HIV+ military pilots to fly, because of the possible damages to their sight caused by the use of anti-retroviral medications. At the time, no one in the army knew about Pedro’s health condition and in order to protect himself he decided to voluntarily stop flying helicopters before he had to take the HIV test. He was transferred to Sao Paulo and retired few years later. “The Brazilian system to treat AIDS works very well,” he says. “I have foreigner friends who come to Brazil for this reason. The government provides me free access to any sort of physician and treatment. If you are retired and HIV+, like me, you don’t have to pay taxes on your income and the City of Sao Paulo even gives you a free public transport card”. Prevention though seems to be less efficient. “Lately I met many young kids who don’t want to use a condom,” he says. “And when I tell them I am HIV+ they insist on having unprotected sex or just walk away”.
Severinho Raimundo - Correia Picanço Hospital, Recife
Raimundo is a 38-year-old truck driver. Lately his health worsened very quickly, he lost weight and felt extremely weak so he decided to go from the village where he lives, some 80km from Recife, to the nearest hospital. From there he was transferred to the intensivecare unit of the Correia Picanço Hospital in Recife, where he’s been treated for the last three weeks. Shortly after being admitted to the hospital, he found out to be HIV+, something he had never even considered. He refers to himself as a regular condom user but, given his very weak immune system, doctors think he might have been positive for a number of years. Unfortunately his wife turned out to be HIV+ as well.
Carlos Starling - Sociedade Mineira de Infectologia, Belo Horizonte
Starling is a well known Brazilian epidemiologist and infectologist. He’s vice-president of the Sociedade Mineira de Infectologia and Scientific Coordinator of the Sociedade Brasileira de Infectologia. At the beginning of his career he worked in Germany, where he had the opportunity to treat his first HIV+ patients. In the mid-80s he moved back to Brazil, just in time to witness the rapid spread of the epidemic. He still remembers the first HIV+ patient he treated in Minas Gerais, a waiter who had just come back from New York City. “Other doctors wouldn’t know what to do, they were too scared of being infected,” he says. Since then he has treated thousands of patients suffering from HIV and AIDS. "The clinical situation has improved significantly since the Brazilian government has started to provide free access to anti-retroviral medicines," he points out. "This has not only given back to patients their right to life but also their right to procreation. If treated properly, today a HIV+ mother can give birth to a healthy child".
Reinaldo de Brito Barreto - Correia Picanço Hospital, Recife
Barreto is 53, works for a non-governmental organization and has known to be HIV+ since the 15th of March 1985, the day he was tested for the very first time. He contracted the virus through an infected blood transfusion that, along with HIV, gave him hepatitis C and syphilis. At the time, he says, artists and musicians in Rio de Janeiro would sell their artworks to collect money and buy medicines to treat HIV+ patients. Money, though, was never enough so they were forced to choose through raffles those who would actually get treated. He was one of the lucky ones. “I used to go back and forth between the hospital and the morgue, just across the street. After some time the guards would recognize me and ask me: are you still alive?”. Before he moved to Recife in 1995, he had lost 32 of his friends. “When the government started its treatment programs my life changed – I felt I could make project for the future again and started to come the clinic and its gym”. Physical exercise is useful to contrast AIDS-related muscular dystrophy, improves sleep and it also helps increasing patients’ self-esteem.
Silvia Almeida - Anglo American Corp., Sao Paulo
Silvia is 48. She found out to be HIV+ back in 1994. It was her husband who gave her the virus, without knowing. When they both found out to be positive, he only had a couple of years to live. After he passed away she was left alone to fight her battle against the disease and grow her two children, who were 14 and 4 years old. Luckily at the time Almeida was working for Anglo-American, an international mining company active in South Africa, which had standardized a protocol that allowed its HIV+ employees to be adequately treated while working. Over the years, Silvia became the head of Anglo- American Brazil’s HIV/AIDS program, which aims to raise awareness and support people living with HIV. "I've always been very scrupulous in taking medications and I have never had a single opportunistic infection," says Almeida. "Many people won’t believe me when I tell them that I'm HIV+ because they associate the disease with an emaciated look. But nowadays you don’t have to wear the disease on your face anymore. I feel fine to the point that I need an alarm clock to remind me to take my medications!”
Izabela Voieta - Eduardo de Menezes Hospital, Belo Horizonte
Izabela, 35, is a physician specialized in the treatment of infectious and tropical diseases and has been working for the past 8 years at the Eduardo de Menezes Hospital in Belo Horizonte. There are some 70 patients in her unit, two thirds of which are normally occupied by HIV+ patients. “It is still very common – she says – that patients are admitted to the hospital without knowing they are HIV+. They assume they have some other disease and then find out to be HIV+”. The first reaction is normally despair but “I try to calm them down explaining that today HIV/AIDS is considered a chronic disease”. Minas Gerais is a rather conservative State and there is still some stigma and discrimination against people living with HIV. “The patients’ quality of life is much better now, with less pills to take and simpler posology. But strict adherence to therapy remains critical for the success of the treatment”.
Roseli Tardelli - Agencia de Noticias da AIDS, Sao Paulo
Tardelli is a journalist and the editor-in-chief of a news agency specialized in HIV/AIDS that she founded ten years ago. The agency, the only one of its kind in the world, has its roots in a tragedy that hit Tardelli personally. In 1989 her brother Sergio found out to be HIV+ and began a legal battle against his medical insurance that refused to pay for his treatment. When a court finally recognized his rights in 1993, it was too late for Sergio, who died soon after, weighting only 30 kilos. After Sergio’s death, Tardelli kept writing about HIV/AIDS and in 2003 she founded the Agencia de Noticias da AIDS, a non profit organization that works to inform and keep the media engaged on this topic. “Back in the 90s you would hear a lot of talking about HIV and AIDS, while today the disease is almost completely out of sight,” she points out. “But the necessity to inform people is still strong: today the most affected by this epidemic are people under 25 and over 60, which also represent the less informed segments of the population”.
Raul Quiroz – chief financial officer, Sao Paulo
Raul, 41, is the chief financial officer of a big financial institution in Brazil. He was born in Mexico City and completed his studies in New York. After watching the movie “Philadelphia” he felt compelled to help people dying of AIDS. He moved there and, as a volunteer, learned many things about the disease. He then moved back to New York, where he found out to be HIV+ in 2005. When his visa was about to expire, the bank he was working for at the time offered him to sponsor a green card. But in order to become a permanent resident, the US government forced you to take an HIV test. Since he didn’t want to disclose his status he asked the bank to transfer him abroad. From then until 2010 – when the Obama administration lifted the ban for HIV+ people to enter the US – all the times he went back to the States he had to hide his anti-retroviral medicines in boxes of generic pills. “Brazil has great laws to help, support and treat HIV+ patients, even foreigners like me. It was very important for me to be able to enroll in the Brazilian National AIDS Program and benefit from the treatment. But the health system’s standards are not the same everywhere and, besides the Centro de Referência e Treinamento where I pick up my medications, I’d rather go to private clinics for my check-ups”.
INFOGRAPHICS Brazil - Care
The infographics are presented for informational purposes only. Every attempt has been made to ensure that the information contained herein is accurate. Figures and percentages are based on latest available data as collected by the World Health Organization (WHO) and the Joint United Nations Programme on HIV/AIDS (UNAIDS) and published on their respective websites.
THUMBNAILS AND CAPTIONS