A Peruvian’s struggle to survive TB and AIDS

Lima, Peru – Weighing only 36 kilos, 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 else.

More than 10 years ago, Piojo, 30, was diagnosed with HIV, something 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.

World TB Day is marked on Tuesday highlighting a disease that kills 1.5 million people around the globe each year, most in the developing world. 

As a transgender sex worker in Peru, Piojo’s perilous condition is not uncommon. Outcasts in a highly conservative, machismo, religious and transphobic society, many transgender people share her fate.

According to a study by Peru’s Cayetano Heredia University, 30 percent of transwomen in Peru are infected with HIV, a reality directly linked to “high rates of sex work and drug abuse, which are themselves linked to extreme marginalisation and lack of other options for survival”.

Discrimination and stigmatisation greatly affect their health, Dr Eduardo Matos, who has specialised in infectious diseases for 14 years, told Al Jazeera.

“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.

Perilous combination

According to the World Health Organisation , TB accounts for nearly one-in-four deaths among people with HIV worldwide. HIV-infected people are 20 to 30 times more likely to develop TB than people without the virus.

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.

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is a social world complete with friends and enemies. Their real family rejects them, so their chosen family is also there.”]

That same health system thwarted Piojo from seeking emergency medical care. Vigorously shaking her head, Piojo recalled a friend who died in hospital for what she said was a lack of proper care because of being transgender.  

In Piojo’s case, she was encouraged to seek help.

“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.

Unable to properly eat for weeks because of the pain of chlamydia in her throat, Piojo realised the urgency for care. Pushed in a wheelchair by her friend, when she arrived at 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 without surgery, 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, Piojo was left to the mercy of social workers and the kindness of others.

‘It was my martyrdom’

Piojo, whose mother died when she was 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, which compromised her studies. Life worsened when a male in the family started to sexually molest her.

“It was my martyrdom,” Piojo told Al Jazeera, her emaciated arms covered from wrist to elbow in deep, razorblade-thin scars.

Entering into a transphobic, conservative society without financial or emotional support, Piojo, like many transwomen, 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 researchers 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, and self-neglect.

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 told Al Jazeera.

Edge of death

When Piojo arrived to the hospital, many feared she would not survive. Huapaya pleaded with the hospital’s social workers to help pay for her 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 hospitalise 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. Days later, two friends arrived with a package from the family that raised her as a child. They had heard about Piojo’s health and complications obtaining health insurance because of her lack of an identification card.

Piojo slowly opened the package – and inside was a letter and her birth certificate. Smiling, Piojo said the mother of the family wrote that she was praying for her and planning a Mass in her name.

“Despite the abuse, I care for her a lot. Thanks to her, I know how to do a lot of things, like cook,” Piojo said in a soft voice. “I felt like trash, like I was abandoned, but not anymore.”

On a recent 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 ward below a canopy of palm trees, Alcedo wheeled her chair onto the grass. Saying their goodbyes, Alcedo slipped Piojo some money saying it was for whatever she might need. Later opening up her present, a heart-shaped radio, Piojo was happy.

Continuing the fight

Two days after the family 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.

As days passed, the IV, oxygen and feeding tubes grew in number, framing the base of her bed like a web. 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 many illnesses were now affecting her.

“Now, HIV doesn’t kill. Opportunistic diseases kill,” Huapaya said referring to TB.

Though Piojo is suffering, she said her ordeal has changed her life for the better. Her days of drinking and doing drugs are over as she promised God she would leave her troubled past behind.

“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.