EspañolChristian Saavedra, 16, died on Friday in San Cristóbal, Venezuela. Neither doctors nor a blood transfusion could help stop the bleeding that filled his skull. The only medication that could have saved him — the coagulant, factor IX — is virtually nonexistent in his country, and guarded like a treasure for the other 4,216 hemophiliacs registered with the Venezuelan Association for Hemophilia.
Hemophlilia is a condition that prevents blood from clotting, meaning even a minor injury could turn into a fatal hemorrhage, if the appropriate coagulation drugs are not administered.
Problems with the availability of this type of medication began in October 2013, even though the Venezuelan Institute of Social Services (IVSS) is the governmental body that has the legal obligation to provide access to the costly medication. The situation worsened between February and July of this year, when the drugs began disappearing altogether, and the International Federation of Hemophilia was forced to send an assistance team.
In July, though, a cluster of between 2,000 and 3,000 dosages of the coagulation medication arrived as part of regular imports from the Ministry of Health.
“In those six months of scarcity, there were patients stranded, waiting for surgery, sick with stomach bleeding, etc. A boy from Barinas sufferred a hemorage and was in very bad shape. There were many people waiting, very sick and in need of the treatment,” says Adelsón Belén, a 31-year-old hemophiliac, who has donated his dosage of the medicine to someone in an emergency situation on more than one occasion.
Then “There was nothing left,” he says. “The following month they told us they had run out of the medicine.”
The Venezuelan Association for Hemophilia calculates that there are currently 525 people across the country in urgent need of treatment. Saavedra was one of them. Hamlim Casas, a representative of the organization, says in Táchira state, where the young man died, not a single lifesaving dosage of factor IX can be found.
Antonia Luque de Garrido, general coordinator of the association, says another young man in the city of Acarigua was found in very severe condition after a motorcycle accident. Fortunately, other hemophiliacs across the country were able to collect nine doses of the medication to treat the young man.
Each dosage costs US$0.65, or $2,600 for the complete treatment.
This is a true act of solidarity in times of scarcity. The treatment of hemophilia is very expensive. Luque de Garrido explains that in order to treat a serious head injury a man of 80 kilograms (176 pounds), for example, needs a dosage of 4,000 units of factor IX every 8 hours. Each dosage costs US$o.65, or $2,600 for the complete treatment.
However, these drugs are not used exclusively in emergency situations. A hemophiliac should be treated after suffering any injury. The Venezuelan Ministry of Health says a typical patient may need 100 doses a month, at a cost of 10,000-20,000 Bs. per unit (about US$2,000, according to the official exchange rate used to import the medication).
Living without Treatment a Constant Risk
During the six months that the drugs have been unavailable (aside from July), Adelsón Belén has had to miss work for an entire month due to inflammation in his left thigh.
The lack of mobility that occurred as result of complications of hemophilia during his childhood does not allow him to have a normal job. He is a cashier at a supermarket in Caracas, and just like any Venezuelan employee, he fears that the economic crisis could cause him to lose his job.
But without factor IX, Belén cannot even function like his fellow employees. His blood’s clotting capacity is at 2 percent of a healthy individual. In the last delivery of medication in July, he recieved four of the 60-80 doses he normally receives, and of these, he only has one left. Economic crisis or not, he may have to leave his job.
He says that prior to the shortage, he would go the pharmacy every three months to get the dosage he needed, in case of an accident or severe pain. Now, without any medication at home, he must rush to the city blood bank to receive an emergency dosage.
“Accidents can happen at work. If something happens to me there, I will have to run to the blood bank.”
“Not having the medication with me is very dangerous. Just going to work is a risk. If someone robs me, I could get shot, or an accident could occur at work. If something happens to me there, I will have to run to the blood bank,” he explained.
It is the only treatment center for hemophiliacs in Caracas, the Venezuelan state of Miranda, and the state of Vargas. Their combined area is 9,872 square kilometers, but under normal circumstances, hemophiliacs would simply keep medicine in the house.
Despite the precarious situation, Luque de Garrido of the Hemophilia Association says Adelsón has endured pain similar to a woman in labor, to give his medication to a child or someone in an emergency situation. Generally, after suffering an injury, the extremities of a hemophiliac are most severely affected.
Adelsón is most concerned about Venezuelan children who suffer from the disease: “I lost mobility in my legs and elbows when I was born, because the treatment could not be found in Venezuela, and they treated us with plasma, which doesn’t have the same effect.”
The association reports that almost 200 children under the age of 9 have had their treatment suspended, which could have a detrimental affect on the normal growth and functioning of their limbs. The coordinator of the organization says the smallest children are given a prophylactic, so they always have factor IX in their blood, which prevents minor and moderate injuries from drastically impacting their health.
“For me, this entire situation is a return to the past.… people will experience a lot of pain and discomfort. When there have been protests in the streets of Venezuela, now that there is the medicine shortage, the president has purchased millions of dollars worth of tear gas and riot gear. The spend all of this money, but they can’t buy medicine for the people, which is more important than mistreating the same Venezuelans, that are in the street protesting,” Belén says.
Indebted Regime Cannot Pay
As of last week, the Venezuelan Treasury owed pharmaceutical companies $3.5 billion, according to the Venezuelan Pharmaceutical Federation (FCV).
Blood clotting drugs are among the 60 percent of medications that have virtually disappeared from Venezuelan pharmacies. Freddy Ceballos, FCV president, said that the same thing is happening with the chemicals that are used to determine, through hemodialysis, the amount and type of medication that a patient may need at any point in time.
Of the 14,ooo vials of factor IX that are needed annually in Venezuela, only 4,400 had arrived.
Luque de Garrido says that of the 14,ooo vials of factor IX that are needed annually in Venezuela, only 4,400 had arrived by September 1, which is 31.9 percent of the annual demand by the end of the third quarter of the year.
However, pharmaceutical company Octapharma, represented in Venezuela by PharMed Enterprises and winner of the public bid for the importation of the medication, told the PanAm Post that all shipments for the year have been made. This is the level that IVSS has requested; they have not finalized more shipments because “the institution does not have the capacity to handle it.”
The spokesman who made the statements also said the state maintains a debt with regard to these imports, but he could not say exactly how much the government owes the company, nor the amount of other medicines that have been requested for import to Venezuela.
Luque de Garrido says it is impossible that IVSS has only requested the 31.9 percent of the required annual medications: “IVSS cannot ask for such a small amount of medication by September.” The shortage, she says, is not from a lack of demand, but the inability of pharmaceutical companies to import the drugs without the ability to pay in foreign currency.
The PanAm Post contacted the Pharmaceutical Treatment Department of IVSS for comment, but they said no further information was available.
On Monday, Adelsón Belén went to IVSS to get his quarterly supply of medication, but he was informed that it was not available. They also did not know when the potentially lifesaving medication would be available again.
The Venezuelan Association for Hemophilia believes that the government approved a new shipment on Wednesday, but it has yet to arrive to pharmacies.
As the supplies remain absent, the organization asks patients to report their complaints to the Venezuelan Program for Education and Human-Rights Action NGO. They track and support individuals whose economic, social, and cultural rights are threatened, to pressure the regime to make changes to the importation of the medication.