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The serious situation of patients with cystic fibrosis in Cuba has come to light through a letter sent to our media outlet by a desperate citizen, who describes the critical health condition of his brother and reports on the lack of specialized care to treat this genetic disease in the country.
Manuel Alejandro Rojas Ramos, a 24-year-old young man with cystic fibrosis, is facing a desperate situation at the Juan Bruno Zayas Clinical Surgical Hospital in Santiago de Cuba.
According to the report, Manuel is experiencing severe respiratory failure with lung function reduced to 25% and multiple infections from resistant bacteria, such as staphylococcus aureus and pseudomonas.
In the letter, there is a lament regarding the lack of broad-spectrum antibiotics necessary to treat these infections and it assures that the medications administered in the hospital have worsened bacterial resistance, endangering the life of his brother.
Given this situation, it is asserted that the only hope for Manuel is a lung transplant or access to genetic modulators, options that are impossible to obtain within Cuba.
In addition to describing Manuel's case, the letter reveals that the lack of specialized care affects all patients with cystic fibrosis in the country, leaving this population in a state of extreme vulnerability.
The sender issues an urgent appeal for a humanitarian visa to be granted to Manuel so that his case can be addressed abroad, hoping to save his life and that his situation will raise awareness about the struggles faced by other patients on the island.
Next, we share in full the letter sent to our editorial team:
Letter sent to CiberCuba:
Good evening,
I am writing to you through this medium because I am desperate about the situation my brother is currently facing. He is a cystic fibrosis patient, a genetic condition that has affected him since childhood and has prevented him from living a fulfilling life. I want to bring attention to his suffering, which is shared by all patients with the same condition here in Cuba, where they do not receive the specialized care they need, and the country is allowing them to die.
His name is Manuel Alejandro Rojas Ramos and he is 24 years old. Everything seems normal at first glance, but not when we mention that he suffers from cystic fibrosis. He has very advanced respiratory failure (his lungs only function at 25% capacity) and is infected with staphylococcus aureus, pseudomonas, and a few other fungi.
He has been admitted for 60 days to the Juan Bruno Zayas Clinical Surgical Hospital in Santiago de Cuba, and as of today, he does not have the broad-spectrum antibiotics needed to treat the bacteria that are destroying his lungs.
Manuel's current condition, increasingly critical, allows for no missteps in his treatment. The poor administration of medication in the hospital has strengthened the bacteria's resistance, and right now, the only options that can help him are a lung transplant or the administration of the necessary genetic modulators in his case, which is impossible to carry out in this country.
So far, we have only been able to prolong his life with antibiotics, but they are no longer effective. What Manuel needs most right now is a humanitarian visa to be able to seek treatment abroad.
I am sending you this news in the hope that you can amplify your case and help me save your life.
This complaint highlights the critical situation of the Cuban healthcare system and the desperation of the families of patients, who see the visibility of their cases as their only hope for obtaining assistance.
Cystic fibrosis
Currently, cystic fibrosis does not have a definitive cure, but medical advancements have significantly improved the quality of life and life expectancy for individuals with this condition.
It is a genetic disease that primarily affects the lungs and the digestive system due to a buildup of thick, sticky mucus in various organs.
Available treatments
Although there is no cure, there are treatments that can help manage the disease effectively
- CFTR modulator medications: These medications, such as ivacaftor, lumacaftor, or tezacaftor, correct the underlying defect in certain CFTR gene mutations that cause cystic fibrosis.
-Respiratory therapies: They include exercises to clear the airways, inhaled medications, antibiotics, and supplemental oxygen.
-Nutrition and pancreatic enzymes: They help people with cystic fibrosis absorb nutrients properly.
-Lung transplant: In advanced cases, it can be an option to improve the quality of life.
Research is ongoing, and genetic and cell therapies are being developed that could provide solutions closer to a cure in the future. These aim to repair or replace the defective gene that causes the disease.
In light of this unfortunate situation, it is worth mentioning that there is currently an extreme shortage of medications and supplies in Cuba, as well as a lack of specialists, conditions in hospitals, and governmental will to change a reality that affects millions of people.
Frequently Asked Questions about the Situation of Cystic Fibrosis Patients in Cuba
What is the current situation of patients with cystic fibrosis in Cuba?
Patients with cystic fibrosis in Cuba face a critical lack of specialized medical care, a shortage of adequate treatments, and a scarcity of necessary medications to treat the infections associated with this disease. This situation leaves them in extreme vulnerability, with limited options to improve their quality of life.
What treatment options are available for patients with cystic fibrosis outside of Cuba?
Outside of Cuba, patients with cystic fibrosis can access genetic modulators, lung transplants, and other advanced treatments that significantly improve quality and life expectancy. However, these treatments are not available in Cuba due to a lack of resources and inefficient health policies.
Why is it difficult to obtain a humanitarian visa for Cuban patients?
Obtaining a humanitarian visa for Cuban patients is complicated due to bureaucracy, lack of governmental support, and international restrictions. Although the medical situation justifies it, the processes are slow and often encounter political and administrative obstacles.
What role do international organizations play in assisting patients in Cuba?
Organizations like Cruz Verde are trying to provide direct assistance to seriously ill patients in Cuba, circumventing government intervention to ensure that medications reach those who need them most. These organizations represent hope for many patients who cannot receive adequate treatment on the island.
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