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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 denounces 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, faces a desperate situation at the Juan Bruno Zayas Clinical Surgical Hospital in Santiago de Cuba.
According to the report, Manuel is experiencing severe respiratory insufficiency with lung function reduced to 25% and multiple infections from resistant bacteria, such as staphylococcus aureus and pseudomonas.
In the letter, the lack of broad-spectrum antibiotics necessary to treat these infections is lamented, and it states that the medications administered in the hospital have worsened bacterial resistance, putting her brother's life at risk.
In light of this situation, it is stated that the only hope for Manuel is a lung transplant or access to genetic modulators, options that are unattainable 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 situation of extreme vulnerability.
The sender makes an urgent appeal for a humanitarian visa to be granted to Manuel so that his case can be addressed abroad, with the hope of saving his life and raising awareness about the challenges faced by other patients on the island.
Below, 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 disease that has affected him since childhood and has prevented him from living a full life. I want his suffering to be heard, 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 letting them die.
His name is Manuel Alejandro Rojas Ramos and he is 24 years old. Everything seems normal at first glance, but not if 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 some fungi.
He has been admitted to the Juan Bruno Zayas Clinical Surgical Hospital in Santiago de Cuba for 60 days now, and as of today, he does not have the broad-spectrum antibiotics necessary to treat the bacteria that are destroying his lungs.
Manuel's current condition, which is increasingly critical, allows for no missteps in his treatment. The poor management of medications in the hospital has strengthened the resistance of the bacteria, and at this point, he can only be helped by a lung transplant or the administration of the necessary genetic modulators, which is impossible to carry out in this country.
So far, we have only been able to extend his life with the administration of antibiotics, but this is no longer sufficient. What Manuel needs right now is a humanitarian visa to seek treatment for his condition abroad.
I am sending you this news in the hope that you can echo their case and help me save their life.
This report highlights the critical situation of the Cuban healthcare system and the desperation of patients' families, who see in the visibility of their cases the only hope for receiving assistance.
Cystic fibrosis
Currently, cystic fibrosis does not have a definitive cure, but medical advancements have significantly improved the quality and life expectancy of individuals with this condition.
It is a genetic disease that primarily affects the lungs and the digestive system due to an accumulation 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 modulators: These medications, such as ivacaftor, lumacaftor, or tezacaftor, correct the underlying defect in certain mutations of the CFTR gene that causes cystic fibrosis.
-Respiratory therapies: 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 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, along with a lack of specialists, conditions in hospitals, and governmental willingness to change a reality that affects millions of people.
Frequently asked questions about the situation of patients with cystic fibrosis 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 appropriate treatments, and a scarcity of necessary medications to address infections associated with this illness. 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 government 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 providing aid to patients in Cuba?
Organizations like Cruz Verde are trying to provide direct assistance to critically ill patients in Cuba, avoiding governmental intervention to ensure that medications reach those who need them the most. These organizations represent hope for many patients who cannot receive adequate treatment on the island.
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