As World Cystic Fibrosis Day falls on September 8, Venezuelan families are decrying the government’s lack of help, high drug prices and hospital deficiencies. Hundreds of patients and their families depend on the funds to cover their medical expenses.

Caracas. The Venezuelan state ignored patients with cystic fibrosis. That’s exactly the feeling felt by Lucia, a 57-year-old mother of two children with cystic fibrosis and grandmother of a child who recently tested positive for the chronic, inherited disease that affects the lungs and, to a lesser extent, the pancreas, liver and intestines. .

Your children are very precious. Either we take care of them or we take care of diabetic patients.»were the words Lucia and other relatives of the patients heard from a Ministry of Health official whom they identified as Dr. Raoul Carbonell, director of the ministry’s health programs. The doctor attended the meeting in 2022 along with relatives of cystic fibrosis patients.

At this meeting, family members denounced the lack of treatment under the National Cystic Fibrosis Program, a protest they have been expressing since around 2013. The relatives protested with equal persistence in April last year when they were treated by National Assembly officials, who, they claim, gave them only “hot water rags.”

Our children are not precious to us, they are valuable.»– said Lucia.

Photo: Tyree Gamboa

This Friday, September 8th, we celebrate World Cystic Fibrosis Day. There are at least two cystic fibrosis units in Caracas: one at the J.M. de los Rios Hospital and the other at the Dr. José Ignacio Baldo Hospital. In Venezuela, tests to diagnose this disease are prepared at the Venezuelan Institute for Scientific Research (IVIC).

“We have no help from the state”

Jeancarli She was Lucia’s first daughter to test positive for cystic fibrosis. At that time, Jeancarli was nine months old. On the 36th day after birth, the child began to cough, on the 40th day he stopped breathing, and on the 48th day, while still in the hospital, he stopped breathing again. This is where my karma began».

By that time, not a single doctor at the various hospitals that Lucia visited with her daughter had determined what the child had. Finally, Dr. Elias Toro Children’s Hospital received a diagnosis.

Now Jeancarli is 15 years old, and during her life she has had to deal with several relapses of the disease. The same thing happens to Caver, Lucia’s other son, who has cystic fibrosis and is 12 years old.

When I have to do tests for both, sometimes there is not enough money and I have to choose which one is more difficult (in terms of health) at the moment. If the exam costs $20, then it costs $40.»– says Lucia.

Photo: Gleybert Asensio

Now both have bacterial infections. If I only get one medicine to treat an infection, I will have to decide who to give it to. For me this is the most difficult thing because we have no help from the government. The only people who help us are the foundations and the families of the patients.».

The story of Sofia Zozai

Since he was three years old, he suffered from multiple lung infections. Until we get to tuberculosis. He spent this entire process at the Elias Toro Children’s Hospital. There he had two respiratory arrests. From there he went to El Algodonal, where the doctor sent him to undergo all the necessary tests to describe cystic fibrosis.».

In Sophia Zozai’s case, the disease primarily affects the pancreas, so she has to take large amounts of pancreatic enzymes, which increase over time. Most of Sofia’s expenses are covered by her grandmother Carmen Sanchez. He does this by working as a house cleaner.

Pancreatic enzymes are difficult to obtain in Venezuela and, if available, are very expensive. The last time Carmen asked about a bottle of Creon, it cost $120.

Thanks to funds, we have help. But many boys and girls die because their families cannot afford all the expenses. And yet Dr. Carbonell said what he said when I heard that I wanted to react in different ways, but the only thing I said was, “This guy has no soul.”»– said Carmen.

Photo: Gleybert Asensio
Hospital condition

The Dr. José Ignacio Baldo Hospital, better known as El Algodonal, has a ward for patients with cystic fibrosis. The walls there are damp, the bathrooms don’t work, the ceilings are in poor condition, and there aren’t enough staff not only to provide medical care, but also to clean the premises and carry out administrative procedures.

It is often family members who are responsible for cleaning rooms, filling out stories, or finding them. And all this as long as the children are taken care of, despite the shortcomings with which the department operates.

Only pediatrics and pulmonology operate there.». Meanwhile, dietetics, nephrology, gastroenterology and psychology – branches of medicine necessary for caring for patients with cystic fibrosis – are not working.

“Our children are forgotten”

For the Venezuelan government, our boys and girls do not exist»This is how Carmen feels when she has no satisfactory answers to complaints made for at least 10 years, when the National Cystic Fibrosis Program began to decline.

My daughter needs a lot of medicine and sometimes I don’t even have money to buy her acetaminophen.»adds Carmen.

In 2005, the government of Hugo Chávez created the National Program against Cystic Fibrosis after, according to a review by Cecodap, on July 8, 2004, the Second Chamber of the Court for the Protection of Children and Adolescents of the Metropolitan Judicial District of Caracas declared a protective action filed by the Legal Aid Service Tsekodap in favor of children and adolescents with cystic fibrosis.

Relatives of cystic fibrosis patients have tried to contact officials who helped them at meetings last April but say calls and messages are not being returned. At that time, they received only a few mattresses and food. Otherwise, nothing improved in patients with cystic fibrosis.

Relatives especially note the deputy of the National Assembly (NA) and the chairman of the Permanent Family Commission of the Academy of Sciences. Asia Villegas PoleThey also appointed as deputies Rodolfo Crespo, President of the Permanent Commission for Integrated Social Development, Gisela Tovar and Marcos Dugarte, as well as Pedro José Fernández Marcano, Undersecretary of Collective Health Networks of the Ministry of Health.

Characteristics of the disease

Suffering from this disease means following a high-calorie diet, taking vitamins, supplements, pancreatic enzymes and other foods. Each case also requires special medications and treatments. The shortage of drugs for these patients is very serious. There are many things».

Family members continue to campaign, make videos, sweepstakes and other events to attract the attention of the government or any organization that wants to help them. We met with people from the Ministry of Health and the National Assembly, and they gave us rags with hot water.».

At that time, they were given nebulizers, therapeutic devices, and monthly boxes of pancreatic enzymes and nutritional supplements. Since 2013, everything has changed. They cut back on everything they prescribed to patients.»– said Lucia.

In mid-August, a 12-year-old boy, Marcel, died after being hospitalized with cystic fibrosis at El Algodonal Hospital. Juan David also died recently, three months ago, he was 18 years old. Another group of patients remains hospitalized with the disease not only in Caracas but also in several areas of the country.

Photo: Gleybert Asensio

At least 12 minor patients with cystic fibrosis have died since 2020, according to family members.

To care for this disease, specialists in the field of pulmonology, gastroenterology, dietetics and others are mainly needed. However, in 2022, the President of the Medical Federation, Douglas Leon Natera, noted that the country has a shortage of medical specialists of 70%.

Last December, this group of relatives protested over the same situation they have been denouncing since 2013. The answer parents often receive from authorities is a lack of financial resources, which they attribute to sanctions.

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