A Cuban mother residing in Havana has voiced her frustration, revealing that despite four years of ongoing efforts, the Cuban government has yet to settle the payment for critical genetic tests needed by her son, Eithan, at a laboratory in Argentina. These tests are vital to pursuing a definitive diagnosis for him.
Dalma Rosell Marrero took to Facebook on Thursday to share her predicament, admitting her hesitation to publicize her son's situation due to its potential political implications. However, she expressed profound disappointment following a recent visit to the Provincial Genetics Center.
"Those who know me are aware of how much I cried on Tuesday. The distress I felt leaving the Provincial Genetics Center, seeing such indifference and deceit—it has no other name," she shared.
Rosell explained that Eithan is stable, and blood samples were recently taken to prepare for the genetic tests he requires. "To this day, the State has not paid for the tests at the Argentinian lab," she lamented, adding that she was initially informed four years ago that these tests wouldn't be conducted.
Challenges in Obtaining a Diagnosis
According to the family's information, seven-year-old Eithan has a structural chromosomal alteration involving the short arm of chromosome 3, and so far, only a karyotype has been performed, leaving his diagnosis still under investigation. The necessary tests include a full exome and microarrays, which, according to Rosell, are not available in Cuba.
She emphasized that these tests are crucial for clarifying her son's condition and improving his medical care. In subsequent comments, Rosell expressed her fear of making a public complaint while Eithan remains dependent on Cuba's healthcare system.
"I feel compelled to speak out because nothing here is false. But I need support because when I do, they will shut all doors on me. They casually warn you of this first. Yet, I am not afraid. We must move forward," she wrote.
Rosell explained that she cannot risk leaving her son without medical care due to lacking the financial means to immediately take him abroad. "I can't leave Eithan without attention unless I'm sure we can relocate and provide him a better place. Had I the full financial resources, I would have done it a long time ago," she stated.
The Broader Struggle of Cuban Families
Rosell assured that her son remains stable, albeit without a conclusive diagnosis, and highlighted how the family's lack of resources adds pressure to their situation. Her recent social media outcry followed a prior post five days earlier, where she expressed exhaustion from staying silent after nearly five years of seeking answers for her son.
"I'm tired of keeping quiet and, as a mother, turning a blind eye. NO MORE, NO MORE, NO MORE," she declared.
In Cuba, where healthcare is publicly managed and no private clinics are available, Rosell insists it's the Ministry of Public Health's responsibility to coordinate and fund any necessary studies abroad that cannot be performed on the island. "The Cuban State is obligated to cover Eithan's diagnosis in the country where it can be done," she asserted.
Rosell criticized that after four years—nearly five, she noted—the family is expected to express gratitude for efforts she believes are the institutions' duty. "In Cuba, and this is my perspective as a mother, individuals with rare diseases are invisible to both the State and society," she remarked.
"Rare conditions exist, and it's their right to be treated with dignity, as human beings," she stressed.
Rosell also detailed the financial hardships she faces in providing for her son's daily needs, noting the lack of access to certain essential foods and products due to their high costs.
Eithan's case is part of a growing number of complaints from Cuban mothers who have turned to social media in recent months to demand treatments, medications, or medical alternatives unavailable on the island.
In April, mothers of children with cystic fibrosis in Santiago de Cuba and Camagüey reported shortages of medications, poor-quality foods, and delays in delivering solar panels crucial for families reliant on electrical equipment. A month earlier, a mother from Camagüey highlighted her baby's need for surgery that couldn't be performed in Cuba. Authorities had suggested seeking international agreements, yet the family still lacked a concrete solution.
In May, another mother from Santiago de Cuba sought assistance to take her four-year-old son to Turkey for treatment after claiming that necessary intervention for a brain tumor couldn't be conducted on the island.
FAQs on Cuban Healthcare Challenges
What genetic condition does Eithan have?
Eithan has a structural chromosomal alteration involving the short arm of chromosome 3, and his diagnosis is still under investigation.
Why is the Cuban government responsible for funding Eithan's tests?
In Cuba, healthcare is publicly managed, and there are no private clinics, making it the responsibility of the Ministry of Public Health to arrange and finance any necessary medical tests abroad that cannot be conducted on the island.