Weighing only 80 pounds, Piojo sat slumped on her bed in a small, dark room thick with damp and stagnant air. There was no light, no window, and nobody.
More than ten years ago, Piojo, 30, was diagnosed with HIV, a disease she did little about as it lay silent. However, when the virus combined with a recent diagnosis of pulmonary tuberculosis (TB), her health rapidly deteriorated to AIDS.
As a transgender sex worker in Peru, Piojo’s perilous condition is not uncommon. As outcasts in a highly conservative, religious, and transphobic society, many transgender women share her fate.
According to a study by Peru’s Cayetano University, 30 percent of trans women in Peru are infected with HIV, a reality that is directly linked to “high rates of sex work and drug abuse, which are themselves linked to extreme marginalization and lack of other options for survival.”
Discrimination and stigmatization greatly affect their health, stated Dr. Eduardo Matos, who has specialized in infectious diseases for 14 years.
“They think a lot about leaving their world where they feel safe. Coming to a hospital means exposing themselves to abuse and discrimination. They think twice, even three times. That postpones their care and they end up in a situation like that of Piojo,” Matos said.
When HIV combines with TB, both diseases advance quickly. “She was on the border of death,” Matos said.
A Perilous Combination
According to the World Health Organization, TB accounts for nearly one in every four deaths among people with HIV worldwide. HIV-infected people are 20 to 30 times more likely to develop active TB than people without the disease.
Falling only behind Haiti, Peru is the second country in Latin America with the highest number of TB cases and the first in the Americas for Multidrug-Resistant strains (MDR-TB). Of the 35,000 cases, 60 percent live in Lima, the country’s capital.
“But, Peru has more resources than Haiti, so it shouldn’t be that way. That means that there has definitely been a failure in the health system,” Matos said.
That same health system thwarted Piojo from seeking emergency medical care. Vigorously shaking her head, Piojo recalled a friend who died in the hospital due to what she said was lack of proper care because of transphobia.
“When I met her, I never imagined her health would be so deteriorated. She was so destitute. I was positive that she was going to die,” said volunteer health worker Myrian Abanto Huapaya, who encouraged Piojo to admit herself into the hospital.
Unable to properly eat for weeks due to the pain of chlamydia in her throat, Piojo realized the urgency for care. Pushed in a wheelchair by her friend, when she arrived to the emergency room her blood pressure was dangerously low. Despite doctors’ efforts, it was not rising.
Piojo’s CD4 cell count, or quantity of white blood cells that help prevent infection, was 49. An average, healthy person has 500 to 1,200. Doctors said that without surgery to elevate her blood pressure with a catheter, a heart attack and death were inevitable.
However, without ever having had a government identification card, acquiring the funds for that operation was a huge challenge. With no health insurance to cover the cost, Piojo was left to the mercy of social workers and the kindness of others, both hard to find as a transgender person in Peru.
After a long morning of medical exams, Piojo lays exhausted at the hospital. Piojo’s CD4 cell count, or quantity of white blood cells that help prevent infection, is 49, confirming the virus's advancement to AIDS. An average, healthy person has 500 to 1, 200 CD4 cells.
“It Was My Martyrdom.”
Piojo, whose mother died at four, was raised by a family that physically abused her and treated her like a servant. She cooked, cleaned, made purchases, and sold popsicles on the street, all of which compromised her studies. When she began to transition, life worsened when a male in the family started to sexually molest her.
“It was my martyrdom,” said Piojo, her emaciated arms covered from wrist to elbow in deep, razorblade-thin scars.
Unable to bear the abuse, at 16 years old Piojo ran away, a common solution among trans women when faced with constant bullying and rejection at home and school.
Entering into a transphobic, conservative society without financial or emotional support, Piojo, like many trans women, eventually fell into prostitution.
“[Sex work] is a social world complete with friends and enemies. Their real family rejects them, so their chosen family is also there,” said Ximena Salazar, a Cayetano University anthropologist and one of Peru’s leading experts on transgender issues.
As transgender sex workers, they are highly vulnerable to disease, violence from partners and police, and sexual and substance abuse. Sequestered in hostile environments throughout their lives, many see no way out, resulting in depression, low self-esteem, self-neglect, and lack of self-care.
According to Salazar, poor health habits such as not eating, frequent use of purgatives and alcohol, and drug abuse can lead to other diseases such as TB. “HIV is one of the many problems, but it’s not necessarily the only one,” Salazar said.
The Missing Piece
When Piojo arrived at the hospital, many feared she would not survive. Huapaya pleaded with the hospital’s social workers to help pay for Piojo’s medical needs and the surgery that eventually saved her life.
“Piojo was scared because she saw the edge of death. That’s why she allowed us to hospitalize her. Before that, she didn’t want to be. She is very lucky to have gotten out of that,” Huapaya said.
After receiving the surgery, a week later Piojo was moved from emergency to an isolated room in the pneumology ward. Days later, two friends arrived with a package from the family that raised her as a child. Through a mutual acquaintance, they had heard about Piojo’s health and complications obtaining health insurance due to her lack of an identification card.
Making herself comfortable, Piojo slowly opened the package. Inside was a letter and her birth certificate, the missing puzzle piece to obtaining her identity. Smiling, Piojo said the mother wrote that she was praying for her and planning a Mass in her name.
“I have my ID, my friends and my family. What more can I ask for? I just want to get out of here,” Piojo said. “I felt like trash, like I was abandoned. But not anymore.”
Though Piojo’s health had improved, she reluctantly ate the hospital food despite urging from doctors, nurses, and friends. Her hemoglobin level, or concentration of proteins in the blood that carry oxygen, was extremely below average, causing severe, potentially life-threatening anemia. On March 4, doctors decided to perform a blood transfusion, which raised her hemoglobin to just below average.
Four days later, on a Sunday, Piojo was surprised by the completely unexpected. Walking through the door marked “Keep Closed,” Piojo saw her surrogate parents for the first time in more than 10 years. Taken aback with shock, her disbelief quickly turned to smiles.
“I told you I wouldn’t abandon you,” said María Angeles, caressing Piojo’s back. After handing Piojo some gifts, she slowly dressed to go outside.
Pushing Piojo in a wheelchair, they found a shaded spot to sit and talk. With hesitation, Angeles broke the awkward silence, asking what she has been doing all these years. After Piojo recounted her experiences with drugs, incarceration and work on the streets, Angeles told Piojo that God was giving her another chance at life and the opportunity to repent.
Sitting silently throughout their conversation, Piojo’s surrogate father, Francisco Alcedo, suddenly stood up. “But honey, you have to stop saying ‘son’ and calling her ‘José.’ You have to accept it,” he said.
Bowing her head, looking up with her eyes, Angeles said, “Yes, I know, I know. It’s just that I have always known him as my ‘cholito,’ as my little ‘José.’ It will take time, step by step.” Piojo sat silent.
Walking back to the pneumology ward below a canopy of palm trees, Alcedo wheeled her chair onto the grass. Saying their goodbyes, Alcedo slipped Piojo some money, saying that it was for whatever she might need. When Piojo opened her present later, she pulled out a heart-shaped radio. She was happy.
Almendra, center, and Solame, right, visit Piojo to deliver a package from the family that raised her as a child.
Four days after a blood transfusion, Piojo's surrogate parents visit her for the first time in more than 10 years. After Piojo recounted her experiences with drugs, incarceration and work on the streets, María Angeles, left, told Piojo that God was giving her another chance at life and the opportunity to repent.
Continuing the Fight
Two days after her parent’s visit, Piojo lay on one side of the bed, curled up like a ball. Suffering from chronic diarrhea, she could no longer eat.
“I can’t stand this anymore,” said Piojo, her face twisted with anguish. Turning on the radio, hymnal music streamed out from the shiny, red speaker. Piojo began to cry, tears streaming down her face for the first time.
As days passed, the IV, oxygen, and feeding tubes grew in number, framing the base of her bed like a web. With every visit, there was more bad news, more new ailments, more prescriptions, more medicine. Though her emergency health insurance covered most costs, it did not pay for everything and money was dwindling fast.
“We are giving her the absolute strongest antibiotics that exist in Peru,” said Matos, explaining that many illnesses are now affecting her at once. Hepatitis, possibly caused by the Tuberculosis medication MDR-TB, yet to be confirmed. Discovery of a parasite, potentially fatal. The list, like the tubes, grew in number.
“Now, HIV doesn’t kill. Opportunistic diseases kill,” Huapaya said, referring to TB.
Currently taking medication to treat the parasite and awaiting the MDR-TB results, Piojo and her doctors continue to fight.
“The day that you stop fighting, you stop being a doctor. We are doing all we can to save her,” said Matos.
A Life Ended Too Soon
At 5 a.m. on March 29, Piojo passed away from multisystemic Tuberculosis. Her body, Dr. Matos said, was too weak to fight the virus that ruthlessly infiltrated her system. Angeles broke down in tears when she heard the news.
“The loss of his life and knowing all that he had to go through hurts me so much,” said Angeles, who, along with family members, continues to use the male pronoun and Piojo’s birthname, Jose, when referring to her. The use of identity-specific pronouns and chosen names is often a hard step to take for family members of transgender people but is important for fostering acceptance and support.
The evening of Piojo’s death, Angeles and her husband were on the last bus to Lima. Upon arrival Monday morning, Piojo’s body had been left outside the hospital morgue due to lack of space. Cremation was the only viable option.
Two days later, Angeles traveled alone back to northern Peru with the pyramid-shaped urn in her lap, a paper tag taped to its side with the words “Jose Ramon Rivas Peña.”
Located on a filing cabinet in Piojo’s childhood home, her ashes sit framed by two photos: one that would have been placed on the Identification card she never received and the other a school picture from elementary school, as a boy.
Angeles always had a lit candle on the altar. Next to the candle was a glass of slowly evaporating water that once empty would indicate Piojo’s soul was finally at rest.
“If God gave us the opportunity to turn back time and start again with the experience we have now, I believe that we would have supported Jose more. I don’t think we would make the same mistakes again,” Angeles said, her tears mirrored by those of her grandson cradled in her arms.
Piojo's ashes in the corner of the living room on top of a filing cabinet, surrounded by some of the few photos the family has of her. Her ashes were given under her birth name.
The International Day Against Homophobia, Transphobia and Biphobia was created in 2004 to bring attention to the violence, discrimination, stigmatization and marginalization LGBTQI people continue to face worldwide. In Latin America alone, 80 percent of transgender homicides occur in this region. Resources for LGBTQI people in Latin America and abroad:
● Center for Promotion and Defense of Sexual and Reproductive Rights in Peru and Latin America
● ¡No Tengo Miedo! (LGBT activist organization, Peru)
● Homosexual Movement of Lima (MHOL)
● Si, Da Vida (HIV/AIDS NGO, Peru)
● Network of Transgender People in Latin America (REDLACTRANS)
● Global Action for Trans Equality
● International Lesbian, Gay, Bisexual, Trans and Intersex Association
● International Gay and Lesbian Human Rights Commission
● International HIV/AIDS Alliance
● National Center for Transgender Equality (USA)
● Center of Excellence for Transgender Health (USA)
Danielle Villasana is an independent multimedia journalist with a passion for stories on gender, identity, health and social politics. Working to spread awareness about the universal challenges transgender people face, Danielle has been documenting trans communities throughout the Americas since 2012. She is currently based in Lima, Peru.
Images via Danielle Villasana.