TREATING HIV/HCV CO-INFECTION
Text by Erin Stone
Photographs by Misako Ono
The “castle” of the Oswaldo Cruz Foundation, or Fiocruz, still sits atop a hill in the Manghuinos region of Rio de Janeiro more than 100 years after it was founded. Originally a base for developing serums to fight the bubonic plague, Fiocruz soon became more than a vaccine production plant. Under Dr. Oswaldo Cruz’ leadership, it developed into a research and experimental medicine institution—a legacy that continues today, housing scientific and technical units dedicated to research, teaching, clinical assistance, drug technology, and general expansion of knowledge within the health field.
Outside the main building of the National Institute of Infectology (IPEC) at Fiocruz, flies buzz in the heat and above the heads of a long line of mostly men, young and older, sitting on outdoor benches and chairs. A TV drones through the open door and glass-windowed office where the patients check in. They are greeted warmly and sometimes hugged by the two women at the desks– it seems they know mostly everyone and everyone seems to recognize each other. One of Ipec’s main services is to provide clinical care, research and testing for those with HIV/AIDS—in fact, the HIV virus was first isolated in Latin America right here at Fiocruz.
Today, though, many patients with HIV/AIDS are discovering that that is not their only disease; it is common for them to be infected with Hepatitis C as well given that HIV/AIDS and HCV are transmitted in some of the same ways. In fact, by now, HCV related deaths have surpassed HIV related deaths and they continue to rise in both Brazil and the U.S. Thus, liver disease, caused by viral hepatitis, has become the leading cause of non-AIDS-related death among people living with HIV. While this can be seen as a testament to the public response to the HIV/AIDS epidemic, it also signifies how far there is to go in terms of a response to the HCV epidemic.
Antonio Carlos Albuquerque Junior, “Cao” as he goes by, is a tall thin, handsome man with brown hair and perfect teeth, which are flashed often—his smiles are frequent. Cao found out he had HIV in the late 1980s, but was diagnosed with HCV only two years ago. Though he was probably infected around the same time as his HIV infection, HCV symptoms don’t show themselves for decades. Having coped with the worst of his years with HIV, Cao certainly has experience with getting devastating health news: “First I slept—a lot! I sleep 3 days for every disease…Then I get up. I already have a lot of diseases. I've a friend who says that I have so many diseases that they are connected with each other, like a disease friendship community, and now they don't want me to die anymore. They prefer to live like orchids in my body, living as parasites.” He laughs, keeping his sense of humor is something he’s learned is important. But he knows that, in his case, laughter is unfortunately not the best medicine: HIV/HCV co-infection can impact the development and management of HIV infection, but what is most detrimental is that it quickens the progression of HCV in the liver. That means that a patient living only with HCV may show signs of cirrhosis in 40 years, but a co-infected patient may feel the effects in far less time.
Cao, though, is appreciating his time right now—he does not feel sick anymore from the HIV and he is not yet feeling the effects of the HCV in his body. He lives healthily, and has a full life—he is an artist, a costume designer at TV Globo, and he has a loving partner of 9 years. He meets with his doctor, Sandra Wagner, whom he is close friends with, at Ipec every month or so. Together, they are in the process of petitioning the government to pay for Cao’s HCV treatment with sofosbuvir, rather than the cocktail of drugs that is now used for HCV treatment, some of which don’t mix well with the HIV medications. However, the biggest problem is that these treatment cocktails do not work fast enough: the most common drugs currently used are injections of interferon in combination with ribavirin over a 24 to 48 week period. This treatment causes horrible side effects and has a cure rate of only about sixty to seventy percent. The newest treatment, a daily oral pill called Harvoni (a mixture of sofosbuvir and ledipasvir), can cure the disease in 8 to 12 weeks with minimal side effects and a ninety percent cure rate. Unfortunately, the cost of the new oral drugs, at $1,000 per pill, is out of reach for most patients.
Early identification of Hepatitis C is critical for co-infected patients to prevent the accelerated arrival of cirrhosis. However, this requires that medical professionals have knowledge about the disease and routinely test for it. This is where Fiocruz is unique. Unlike most public and private medical institutions in Brazil and the U.S., it is routine to ask patients of IPEC to be tested for Hepatitis C regardless of what infectious disease they present with.
But for Cao, this step is long past, and now what he must do is wait for treatment. He speaks of walking outside and enjoying nature, enjoying time with his lover, living this healthy life. His work keeps him very busy, but he always takes time to appreciate the life he has been given, especially after all he has been through. As he speaks of his life now, Dr. Sandra nods her head, smiling. “My life is good, perfect!” Cao says with a laugh. Dr. Sandra laughs too, but interrupts him because she knows it is important to say that it was not always this way: “[Cao] had very difficult times in his life. We tend to forget the bad times. This is a way to survive. This is one of the reasons why he survived.” Cao looks at her nodding, his face becoming more serious. For a moment he seems to return to his past, saying quietly that he lost all of his friends, all of them, to AIDS. But he clears his throat and goes on to say that because of the support he received from his friends and family during his most difficult times, he feels he has an obligation to stay alive: “One day I woke up at home and I felt impressed with the amount of people sleeping around me, supporting me not to die. I woke up and said, everybody get up, you a TV star, and you a theater diva, sleeping on a couch!? Go home, I will not die, I promise!”
And he’s kept that promise, partially because he decided to return to Fiocruz for the majority of his AIDS treatment. When he first got sick and did not react well to the AZT, he relocated to the U.S. for his treatment. However, there he felt he was received with prejudice by his physicians given he is a Latin American (“brown”) gay man. He returned to Brazil and found a community at Fiocruz where he became part of a research group of HIV patients who had a resistance to antiviral drugs. The research was a government-funded trial to test the effectiveness of TMZ 114.
This community was made up of primarily transgender and transsexual people and gay men, who were of diverse ethnic and socioeconomic backgrounds. Fiocruz became Cao’s safe haven. The antiviral may not have cured any of them, but the kind of solidarity they found at Fiocruz healed them in other ways—as Cao says, they may have had different problems, but they had the same virus, and this allowed them to come together.
However, the openness required by the atmosphere at Fiocruz is not for everyone. Many people with diseases like HIV and HCV want to remain anonymous. This is a fact that saddens Dr. Sandra, but it is also a decision she respects: “It is hard. It is always hard. It is important to us to respect the decision of the patients. We cannot force him or her to show their faces. We try to work in a way that everybody feels comfortable. For instance, I am concerned about the transgender women because they don’t have a place to go. They suffer a lot of stigma. Here [at IPEC] we are trying to train [our staff] how to behave with these differences. Because you have to treat these people normally because these people are normal. They have to feel comfortable with the services they are getting.”
Fiocruz is an example of the Unified Health System (SUS) at its best, producing new research and treatment methods while adhering to an overall value of serving anyone and everyone, regardless of race, class or gender. But what really makes Fiocruz different, Dr. Sandra believes, is the people: “People are dedicated to their work here. We have a very organized administration process. We are part of the Ministry of Health and we give the professionals good salaries and training, but most importantly it is the interest that people have in these specific causes and topics. People are most important to this whole process.” Dr. Sandra herself has been working in the HIV treatment field since the 1980s, and she continues this work today at Fiocruz.
Dr. Sandra and Cao walk out of her office together, laughing and speaking quickly in Portuguese. They step into the bright midday light, for a moment becoming two silhouettes melded at the shoulders—a symbol, it seems, of Dr. Sandra’s, and Fiocruz’s, adherence to a strong belief in justice through science: “We always have to look for better options for our patients.” Dr. Sandra says. “That is what science does.” And yes, while sofosbuvir and other new oral drugs are much better options for co-infected patients like Cao, still he and Dr. Sandra must fight to achieve access in a process that may not succeed soon enough.