Entre angustia, incertidumbre y miedo sobreviven pacientes trasplantados en Venezuela
A publication on Instagram by the account @amigostrasplantadosdevenezuela with the message “Transplant patients in danger. More than 3 months without receiving immunosuppressants from the IVSS”, warns about the serious situation that patients are going through.
Pableysa Ostos // Correspondent lapatilla.com
“Amigos Trasplantados de Venezuela” (ATV, Transplanted Friends of Venezuela) is a non-profit organization founded in 2001 (NGO), it has 15 chapters in the country. Its members are transplant recipients and defenders of their rights as patients.
They thus seek to contribute and provide comprehensive support to those who are waiting for or have received an organ transplant, in order to improve and maintain quality of life and also an active and productive integration to society.
Reimer Villamizar, Director of “Amigos Transplantados de Venezuela”, admitted that they are already reaching a crisis point. He explained that in the first months of January 2023 there was a huge shortage of mycophenolate mofetil, an immunosuppressive drug that prevents organ or graft rejection in patients receiving transplants.
“The delivery of medicines by the Social Security Administration was restored in March 2023 and this was at the national level. Transplanted Friends from Venezuela had a little stock and many emergencies were covered. What happens if a patient does not have their immunosuppressive medications? Well, it happens that episodes of rejection begin to appear. How does this happen? What immunosuppressive medications do is inhibit the immune system so that the body as such recognizes the transplanted organ as its own,” Villamizar added.
Since there is no immunosuppressive medication, then the immune system begins to attack all that is ‘foreign’, in this case it would be the graft, the transplant or the transplanted organ.
Shortages even before any sanctions
But this situation is not new. In 2017 there was a crisis similar to this, which resulted in many episodes of rejection. “We are talking about almost 100 rejection episodes in 2017. Many of them were able to recover, others had many complications derived from these rejection episodes, and rejections as such. And this, of course, brought some consequences in the loss and death of people. In 2019 there was another shortage. But none of this is the product of sanctions, this has already been happening for a long time and is gradually increasing.”
The director of the organization warned that 2023 closed under this situation and in 2024 the failure in the delivery of medicines continued.
“By the end of the year and since September, complaints were already being made about a medication called Tacrolimus. Even as early as September, I’m telling you myself, because I have a transplant, I myself met in the high-cost pharmacy in Los Ruices with the general director of high-cost pharmacies of the Social Security Administration. We as an organization approached it about the Tacrolimus situation that was already occurring. This was the first month without delivery by the high-cost pharmacy to patients,” Villamizar said.
He commented that the official told him to inform the other patients that the medication was already in the country and that it would be delivered, which did not happen. “I’m talking about September 28th and we are already in January 2024,” he said.
Neglected transplant patients
The organization made clear that they began the year with this emergency and see it as a regrettable and alarming situation given that a few transplants have been performed in the unit that operates in the ‘Popular Clinic’ of El Paraíso (Caracas).
But the reality is that many transplant patients live with anguish, uncertainty and fear, because they cannot get the drug Tacrolimus.
“When December arrives, international pharmaceutical companies, the few that could distribute this medicine, close in December and some do not open until after January 15th. So some, who could or had the opportunity to buy, were able to do so. At this moment the pharmacy is receiving preorders and you have to sign up on a list to see when it arrives and they are distributing. I’m talking about a bottle being sold for around $50. These are medications that have to be taken for life. So we are concerned that not all people can or have the economic capacity to buy this medicine,” said Reimer Villamizar.
Of about 2,000 people who are undergoing a transplant procedure or have a transplant in Venezuela, almost 50% must take this medication.
“And there is another medication called Micofenolato Mofetil that is already scarce already in some pharmacies, inside friends are saying. Then two immunosuppressants would be scarce, and it is important to note that all these treatments are the combination of several immunosuppressants, it is not just one, it is two or three in some cases. They are essential for the survival of a transplant patient,” explained Villamizar.
At risk
According to information managed by Transplanted Friends of Venezuela, last year there were a few deaths of transplanted people and others became complicated. “Sometimes it is difficult to get a doctor to tell you, ‘look, you lost your kidney as a result of this or that,’ but there are some testimonies from patients who state that after having taken some of the medications that they are giving us in the Social Security Administration, they have presented problems, they have presented certain complications. Even a girl, a young woman almost at the end of the year during the last trimester, received some medications, after 10 days she had very serious complications and she ended up in the ICU, she almost lost her kidney. Thank God she was interned on time, she had to go to a private clinic.”
He explained that patients, once they are transplanted and for doctors to control how that medication is going in their body, must undergo tests called levels. “Those levels (tests) are around $100 each time it needs to be done.”
This evaluation provides information about the dosage of medications. “If the dose is very high for them, then they must readjust the dose; once the dose is readjusted, other levels must be re-done. In other words, this is an expense that would not be incurred if we had quality medications. Before this was not seen that one had to evaluate the levels so often, but at this time doctors have seen the need to request that patients repeat the ‘levels’ of, for example, Tacrolimus,” he explained.
There are many patients, even recent transplant recipients, who must undergo these tests once or twice a month. That is, they incur expenses of $200 on that test alone. The monthly maintenance of a transplant depends on the medications the patient requires, and the cost is generally high.
“I’ll give you my example: I called a pharmacy that sells these medications in Las Mercedes and there they told me that 10 tablets of Cirulimus, a medication I take, costs 120 dollars (U.S.A.). I need 60 tablets, we are talking about 720 dollars in these tablets a month. How can a patient be able to afford them? We do not have the capacity,” he pointed out.
Transplanted Friends of Venezuela has tried to attend emergencies. The relatives of those patients who died last year sent their medicines to the organization.
“At this moment we are making donations with medicines from patients who ‘have left’, because they unfortunately lost their lives. So, that’s how serious the situation is, this worries us a lot. Even last year until September, I received expired medications from 2021. Starting in September, they began to deliver medications with a current date, but before September 2023 we were receiving expired medications from 2021,” he warned.
