Living “with God in the mouth” while waiting for a transplant in Venezuela

Johana Fernández wipes away her tears and gathers strength before going in to see her 17-year-old daughter, who needs a bone marrow transplant to save her life, a procedure that is rarely practiced in Venezuela and is unattainable for most.

Public health services in Venezuela have been overwhelmed for more than a decade. The government blames the crisis on international sanctions, in force since 2019, but experts agree that the collapse began much earlier.

The suspension of the main organ transplant program, for example, materialized in 2017 and agreements to carry them out abroad also ceased in 2018.

Johanna is desperate. Yohalis, 17, suffers from sickle cell anemia, an inherited blood disorder characterized by defective hemoglobin, and a bone marrow transplant is now urgent.

“Are you feeling well, daughter?” Johana asks her as she crosses the threshold of the door. “It hurts a little bit,” the young woman answers in a low voice, lying on a bed in her house. She has a hard time standing up.

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They live in La Vega, a poor neighborhood in the mountains of Caracas.

A clothes hanger attached to the ceiling of thick sheets of zinc serves as a pole to support the plastic container through which his grandmother, who is a nurse, gives him intravenous painkillers when the pain attacks strong.

“She is 17, but she looks 12 (…) anemia slows their development,” Johana, 36, familiar with medical terms after years of attending consultations, explains to the Voice of America.

Yohalis has been plagued by pain since she was her first year of life.

Once a month he goes to dialysis, for at least six years. But the need for a transplant today is already imminent.

“We have been waiting for the bone marrow transplant since 2017, but since February 26 (2023) we were asked about the transplant as urgent,” Johana continues.

There are no official data on how many people are waiting for a transplant in Venezuela or how many have lost their lives while waiting. There is also no transparency in the process to request the operation.

In the case of Yohalis, his transplant – in which the damaged or destroyed bone marrow is replaced by stem cells from a healthy one – is only performed in two health centers, according to the specialized NGO Prepara Familia.

A public hospital, which requests that the patient bring all the supplies for the procedure; and another private, simply priceless for this family.

So the hope of Yohalis and other patients, mostly children, is on a list, awaiting action by the state or some charity.

“They lead their lives daily with God in their mouths, waiting for God’s will”, Johana describes.

The risk: losing your life

Yohalis little wants to talk. He watches television with his eight-year-old brother Santiago, who keeps him company.

“We looked for Santiago with the intention that he could donate the bone marrow to his sister, when they first proposed the transplant to us,” says Johana, who is a carrier of the disease.

But Santiago “came out as a carrier” and he cannot be the donor his sister needs either.

And without a compatible family member, Yohalis’ lifespans are reduced.

“The risk that is run while waiting for a bone marrow transplant, is what has already happened with many patients, is to lose their lives,” she continues with a broken voice, while drying her tears.

According to data from the independent National Transplant Organization of Venezuela (ONT), so far in 2023, four children have died waiting for a transplant, only at the JM de los Ríos hospital, the largest reference for public pediatric medicine in Venezuela, and where Yohalis is treated.

“Now the children and adolescents cannot resist, they have everything against them, they cannot continue waiting” for a transplant, he wrote at the beginning of April on Twitter Prepara Familia, which was born in 2008 to monitor children and adolescents hospitalized with chronic pathologies.

On the Instagram account of ‘Santi and his friends’, a community of those affected who provide support and seek donations, there are plenty of tragic stories about this eternal wait for a transplant.

paralyzed agreements

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The Venezuelan government, through the state-owned Petróleos de Venezuela (PDVSA), had an agreement with the Association for Bone Marrow Transplantation (ATMO) of Italy since 2010, which allowed children and young people to travel to that country to undergo a transplant .

In 2018 this program, which covered the stay and all costs, was suspended due to non-payment. The debt amounted to more than 11 million dollars, according to press portals.

“Venezuela sent the funds through PDVSA and they were retained in Novo Banco, Portugal, thanks to the sanctions and the criminal blockade,” the then Foreign Minister Jorge Arreaza justified in May 2019.

But the program had flaws since before the sanctions.

“In 2017 they began to reduce the number of children leaving until it was no longer carried out,” Katherine Martínez, director of Prepara Familia, told VOA.

The paralysis of the program generated protests by human rights organizations.

“We had 30 children on the waiting list alone at the JM de los Ríos Hospital, waiting for a bone marrow transplant. We held all kinds of demonstrations (…) four years ago, on April 9, we held a press conference where it was announced that these children were sentenced to death if they were not given the option of a transplant and these children begin to die in the month of May”, Martínez continued.

Martínez explains that to perform a live-to-live transplant “you have to have a compatible donor up to the fifth degree of consanguinity.”

“And that is complicated because not all people can have the wonder of having a family member who is compatible to donate an organ, they are exceptions,” he adds.

“Only promises”

In Venezuela, organ transplants from cadaver to live have been suspended since 2017. And live-to-live transplants are scarce, among other things, because the immunosuppressants necessary so that the body does not reject the transplanted organ are in short supply.

In that 2017, the Venezuelan Foundation for Donations and Transplants of Organs, Tissues and Cells (Fundavene, state), sent a statement to hospitals in which it said that the suspension of the program was “temporary” and was due to the health situation public at the “infrastructure level” of hospitals, “human resources” and scarcity or “timely supply of immunosuppressive drugs”.

There is also no bone marrow bank or national registry in the country, for example.

And there is only one public health center, the Chet Hospital in Valencia, that attends to the procedure that Yohalis needs if he had a compatible bone marrow donor.

Explains Martínez, from Prepara Familia, that in that hospital “very few transplants have been performed throughout history.”

And Johanna doubts that this is an option to save the life of her daughter and others in a similar condition.

“They do not guarantee treatment, it is a very expensive treatment and they give you a list of ten pages of all the material they ask for and most of the materials are not found in Venezuela,” he adds.

In November 2021, President Nicolás Maduro promised a plan to resume bone marrow transplants.

“We are going to advance a plan to accelerate transplants for those who are waiting for their operation,” Maduro said during a health conference.

But Martínez accepts that “they are only promises.” “We have not seen a clear response from the State, they are only promises,” he insists.

“I get very depressed, I cry, I get upset because I want to go back to my daily life, but God’s timing is perfect,” Yohalis wrote a few days ago on his Instagram account.

“This relapse has been the strongest of all that I have had,” continued the young woman who is months away from graduating from high school.

“I want to be well so that I can attend my graduation.”