Patients with acromegaly and their families were received by Adriana Auge, director of IVSS pharmacies, who received the letter and promised to receive them again on Friday, May 12 “to see what medicines can be obtained to give them to us.”
Representatives of more than 500 patients suffering from acromegaly in the country delivered a letter this Thursday, May 11, expressing their concern about the supply of expired medications, many of them more than a year after their expiration date, assured María Elena Fernández, sister of an acromegalic patient.
From the headquarters of the high-cost pharmacy of the Venezuelan Social Security Institute (IVSS), in Los Ruices, east of Caracas, Fernández explained that this situation has worsened in recent years and, since he does not have the resources to buy treatments on their own, have witnessed the deterioration and death of those who suffer from this condition.
The acromegaly is an endocrine disorder, due to an excess production of growth hormones in the pituitary gland. The disease causes abnormal growth of bones in the face, soft organs, hands, and feet. It is considered a rare disease.
For Fernández, “the delivery of these extremely high-cost medicines” is essential. Patients with acromegaly and their relatives also requested the IVSS to consider their national distribution, since they are medicines that need to maintain a cold chain and those who live in the interior of the country find it difficult to transfer them.
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The patients and their families were received by Adriana Auge, director of IVSS pharmacies, who received the letter and promised to receive them again on Friday, May 12 “to see what medicines can be obtained to give them to us.”
For his part, José Clemente Castro, who suffers from acromegaly and lives in Trujillo state, recalled that in 2017 they had to organize to go to the Ministry of Health, the IVSS and the Vice Presidency of the Republic where they reiterated the importance of receiving the medicines on time, “it happened that from 2017 to 2022 the medicine never arrived.”
“Today many acromegalics cannot walk (…) Thank God we are here and we can walk, but they have even led to their deaths due to lack of medication,” he said.
While Angel Prato, president of the NGO Líderes Libres, urged the IVSS to increase the staff working in these areas, as well as more communication channels for the elderly.
With information from Solidarity Press
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