In addition to the failures of the National Cystic Fibrosis Program, which has not provided the kits to patients since May 2024, there are also failures in hospitals. Andrea Alvarado, 18 years old, died two months ago as a result of respiratory arrest, because in the hospital there was no mechanical respirator that could keep her alive.
A total of nine patients with cystic fibrosis have died during 2024 due to lack of treatment, due to the failures of the National Cystic Fibrosis Program in the last decade, which has left at least 600 patients without being able to access essential medicines to treat the disease.
Ainalem Miranda witnessed the death of her daughter, Andrea Alvarado, 18, two months ago as a result of respiratory arrest. Her death could have been prevented, but there was no mechanical respirator in the hospital that could keep her alive.
«Andrea was diagnosed with this disease when she was three years old. Since 2009 we have had a constant struggle to obtain high-cost medicines, which are impossible to buy here, rather than buying them because there are none in the country,” said Ainalem.
Patients suffering from cystic fibrosis need a series of medications per month. One of the most important is Trikafta, a modulator that helps the protein created by the mutation of the CFTR gene to function more effectively. The 30-day treatment costs 5,800 euros.
Even with fundraising campaigns and selling their belongings, families cannot afford this medication. In addition to the fact that others are needed such as inhalation solution, Viscozyme, Salbutamol, Budesonide, Tobramycin, pancreatic enzymes and vitamins.
In December 2022, relatives and patients were received by the vice minister of health, Yuliana Ramoswho promised them that everyone would be given the complete treatment in those days. The director of High Cost Pharmacies of the Venezuelan Institute of Social Security (IVSS), Adriana Auge Blanco, also stated that she would deliver the medications to patients’ homes and that she would create an “immediate action plan.”
In April 2023, the family members complained to the Permanent Commission for Comprehensive Social Development of the National Assembly, Health authorities and representatives of the Ombudsman’s Office, which was also They promised to immediately treat these patients and their families; however, A year and eight months have passed and no authority has fulfilled any of the promises.
Carlos Trapani, director of Cecodap, recalled that this problem is not new and is a case that is more than 20 years old. “Since 2002, we have been fighting for treatment for patients with cystic fibrosis.”
Trapani indicated that the first judicial action in favor of boys and girls with cystic fibrosis was attempted in 2003 and on July 8 of the following year, there was a ruling that forced the State to be able to guarantee all essential and high-cost medications. that patients with this condition require.
«It is very clear, there is no need to discuss whether children need medication or not. There are sentences, there is the law. Mothers are not asking for a favor, they are demanding a right. There are 600 citizens with the same rights that ministers and authorities have. These mothers do not need more work tables, they need the medications to arrive in a timely manner, with quality. AND“It is essential, one day that passes is one day less for children with cystic fibrosis”alleged the director of Cecodap.
The mothers indicated that the last time they received medication was in May. For them, the kit was insufficient and they demand that the State fulfill its duty.
With information from Runrunes
Post Views: 33
