I represent the Foundation for the Assistance to the Patient with Chronic Myeloid Leukemia, a foundation that is practically young, recent, started from the legal point of view in October last year and I have been part of this great institution from mid-February – March.
Felipe: Good afternoon everyone, it is a pleasure for me to be with my friend Nelson Brown from Venezuela again, I am going to allow him to introduce himself, I have the honor of meeting him and speaking with him at least once a week, like this that I am very proud to be with him again in this interview, we have new news for everyone because there is an important recognition for Nelson in terms of the international context and things have happened in Venezuela and we need this second interview, this second conversation to be able to establish these new things that are happening in Venezuela, so Nelson please introduce yourself to the whole community
Nelson: Thanks Felipe, always so jovial, for those who don’t know me my name is Nelson Brown from Venezuela, I represent the Foundation for Assistance to the Patient with Chronic Myeloid Leukemia, a foundation that is practically young, recent, started from the point from a legal point of view in October of last year and I have been part of this great institution from mid-February – March, the union with them was as a result of the work I had been doing with Asaphe, who had no legal representation, and that with this group of people We were working with the patients, and with the census, and they gave me the opportunity to belong to them and it really was wonderful, it is one of the best things that has happened to us because we have engaged the whole team, we have done a wonderful job and one of the most successful things we have had in the short term has been the national census of patients, we started this census and once officially entered the assistance foundation we have given more strength, more value, more content and the acceptance was great. We have registered more than 250 patients and we are still registering more and we have plans for the future.
Felipe: It sounds extremely interesting to me, because I know the story from inside the weekly conversations we have had, but tell all of us how is the relationship with this team, how many people make it up, are you the representative of the organization?
Nelson: Yes, we are 8 people, the President who is Minela López, I continue as Advisor for National and International Institutional Relations, there is the Vice President who is Zaida Moreno, there is Yanet Reyes who is the 1st member, there is Sara Colina who is The treasurer, who is in charge of having all the contact with the patients, we have a social media coordinator who is Ángel Selena, who is constantly in charge of sending information and receiving information, we have a legal advisor who cannot be absent and we have also a medical advisory board, a group of doctors who are an indirect part of the foundation but who are ready to participate in any kind of guidance and help for patients and for oneself as managers of the institution.
Felipe: Very well, so you tell me that there are more or less 250 patients.
Nelson: Yes, we have managed to contact exactly 250 patients, among those patients there are 2 from GIST, there is 1 from ALL in the maintenance phase because it requires consuming imatinib and the rest of us are CML patients.
Felipe: Tell me, how does it work in your country, is there a cancer law, is there a structured way of treating cancer? Because we have had many problems with Venezuela in terms of access, if you can also talk to us about that in these two ways of how cancer is articulated in Venezuela and of these accesses that we are finally seeing the light
Nelson: I believe that since 2011, I remember more or less, that President Chávez was still already suffering from cancer, a lot was enacted, or rather a lot of appointments were made to create cancer hospitals and sub-hospitals and laws cancer and really that came to us, even that was adrift, waiting as if waiting for the promulgation of the law but it never happened.
Felipe: In other words, they could never build the hospitals, there was no definitive articulation:
Nelson: No, from the number of hospitals that they had said, they were not actually built and the cancer law was left there, on standby.
Felipe: Let’s talk about something positive, tell us, how did the medicines arrive? If there are medicines, if there is imatinib,
Nelson: The imatinib that arrived is under Spanish supervision and from India, no medicine had arrived for more than a year, or I think a year and a half that imatinib did not arrive, what is dasatinib and what is tasigna, if it is missing It has not arrived for years, but the generic imatinib option arrived now, but it had not arrived for a year and a half, it is arriving now this month, more than a week ago it began to arrive not in all states, it has arrived to Maracaibo and in Valencia, and in Maracaibo the management of the Sso has put a thousand and one buts not to deliver the medicine, what is the intention? I don’t know. In Valencia I understand that so far there has been nothing new and we hope it will arrive for the rest of the states.
Felipe: At least it’s an open door, right? I mean, imagine a year and a half without the medicine, I find it a lot,
Nelson: Yes, it is true, but we have a problem right now that of the 250 patients we have about 75 patients who are tasigna consumers and there is no tasigna, it is a large number.
Felipe: I mean, the battle is definitely not over.
Nelson: No, I think it’s never going to end.
Felipe: I hope that our authorities will one day understand that this is not a political problem, it is not an economic problem, but a human problem.
Nelson: We are in that fight, we are in that fight for the tasigna and well, let’s hope that this will be solved soon, because we can’t talk anymore.
Felipe: It has to be done.
Nelson: Percent there is a curious fact is our organization, which apparently is a unique case in Latin America, we have a Dr. who is a CML patient, at age 12 she was diagnosed with a purpura, her spleen was removed, then she She graduated as a hematologist and 7 years later she suffers from CML, and the curious thing about this, to put it also beautiful, I don’t know whether to name it this way, she tells me that it is impressive that one as a hematologist tells patients what it is , but that you know how the patients feel too, that is, you really understand them.
Felipe: I think it is a tremendous tool, we could do a conference with it, I think it is a potential.
Nelson: It is in the plans, because as far as I know it seems to be a unique case in Latin America.
Felipe: I also met another
Nelson: Ok, so it’s two, two in such a large population is important.
Felipe: Now let’s talk about more technical things, already earning our salary and knowing what happens in Venezuela, direct question, Is there a national cancer institute?
Nelson: Yes, there is.
Felipe: But with nnnnn, I think it doesn’t coordinate everything that it should coordinate.
Nelson: No, no, if there is, there is the National Cancer Institute, but we do not have the national cancer law, but if it exists, it is a public institution that has been around for many years but we do not have the cancer law.
Felipe: You have to fight for that too, you know that the law articulates all the processes, having a cancer law is tremendously important.
Nelson: Yes, there are countries that also have a cancer institute but still don’t have the laws.
Felipe: It’s like having a head without a body.
Nelson: It’s kind of illogical.
Felipe: Yes, let’s talk about all the illogical things that we have in Latin America that we handle, it would be incredible, right? Things that one cannot understand. Let’s see if your technology evaluation agency works, to explain to everyone what the Technological Evaluation Agency is, it is the agency that evaluates the drugs that enter the country and that allows only those drugs that are good for the country to be distributed in the country. human health, so does your agency exist? Is there an evaluation?
Nelson: Yes, if there is a national institute, if it exists, it is called Rafael Rangel and it is directly attached to the Ministry of Popular Power for Health, now, that it is working with the drugs that are entering or with the few drugs that are entering, I really do not know. But if it exists, at least there is the skeleton:
Felipe: You always have to think that in Venezuela there is a structure that is like hidden, difficult to understand, I think Venezuela has much more labyrinths that are difficult to unravel.
Nelson: But there are institutions here, that is, they exist as institutions but they don’t work. I was amazed these days that I was seeing a report from Doctors for Health, a group of doctors that exist nationwide and have taken the task of evaluating all hospital institutions because they are part of those institutions, there are more than 9000 ‘Doctors and they have prepared some reports where they reflect the reality of the hospital systems here, there are 102 hospitals here in Venezuela and they tell you that among the best of them they do not reach 50% operation, imagine, already there you can get the situation .
Felipe: Well I imagine totally empty rooms, people asking for health and that there is nothing.
Nelson: No, on the contrary Felipe, the rooms are full but there are no medicines, if you go for an operation you have to carry everything, you have to buy everything, they don’t give you anything, like years ago, other things are that Everyone knows the salary situation here that we depend on a salary of $ 1 per month to put it this way but it does not cover you and our out-of-pocket expense is practically 200% for health.
Felipe: I have to admit that I told Nelson a very unpleasant joke when he told me how much the salary was, and I told him: I pay you double and come to Chile and it was very unpleasant and I apologize again, that is, $ 4 it’s crazy it’s unintelligible, I don’t understand how you can live in a country with $ 4.
Nelson: You can’t, and another thing that you can’t express yourself either or you can express yourself properly because it’s frowned upon, that’s why you have to be very careful with what you say.
Felipe: remember that we have a country where we cannot talk much, that our leader was threatened with his daughter, we are not talking about Venezuela now, because unfortunately it forces us to think in what world we are living. Now tell me about the tests, and our entire community knows, you know that all our patients every 3 months or every 6 months and the worst cases one a year, a PCR should be done, I don’t even want to ask if they do PCR in Venezuela.
Nelson: Well, if you have $ 450 to pay for it, if you can get a PCR done.
Felipe: So if you earn $ 4 then you would have to work 10 years for that.
Felipe: In other words, the 250 patients that you have, how many have had the PCR?
Nelson: They have been done like 5 or 6 patients.
Felipe: Are we giving him medicine and we don’t know if they are working?
Nelson: We are taking a drug and we don’t know how we’re doing, or we haven’t been taking the drug for a long time and we don’t know how we’re doing. I remember that about 5 months ago with the situation of a patient who died, which was Greisy Salazar, that it traveled the world because she asked for help everywhere, Denis Costello asked me for a direct report from tasigna consumers here in Venezuela and I I was amazed at the results, 67 patients were contacted by phone by me and I was amazed that there were actually 5 who had the PCR and that they had to pay for because they did not know how they were doing and they are patients who are 2 and 3 years old without medication, at Unless you can afford it, a box of tasigna costs you $ 550.
Felipe: Sure, it’s crazy, there’s no way to finance that when you’re in a country where the minimum is what we’ve talked about. Now tell me, you see from the organization a vision of the authorities for the change or you see that this is not going to change in a period of time.
Felipe: It is a difficult question, I know, but today I was in the Ministry of Health of my country and that is why I ask you that question.
Nelson: We as an organization have pressured our authorities through all social networks, indicating our situation due to the lack of medicine, thank God, I will take the opportunity to thank The Max Foundation for the help they gave us, we know it was difficult for a few months due to the same country situation and the same coronavirus situation, but thank God the medicine arrived and a number of people have benefited, we really appreciate it.
Felipe: Yes, The Max Foundation is always online with all of us.
Nelson: But I really want to express myself in some really positive way, but it is difficult, and even more so now that parliamentary elections are coming that have put a number of people, there are 502 registered by the government, something that has never been seen, 502 applicants from the government, so to be positive, I would like to, but no.
Felipe: In the last interview I asked you if Venezuelans were happy, you told me yes.
Nelson: Happy, I don’t know, it may be that because we make jokes about anything, the world is not falling on top of it and from that we get a joke, because for those we are good, but the truth is sad to see people on the street constipate with a long face, with an uncertainty on the face, one would like to be positive, one tries to set aside so that it does not affect oneself or the family environment. But it is not easy.
Felipe: I have a new question to unburden this conversation and thank you very much for this time because he who has to pay for the internet, has to pay it to talk here, so, I the other day talking with someone, I don’t remember who, from some point country, he told me that you have the super power that you are not afraid of earthquakes, I believe that each country has a super power of some natural disaster that does not hurt us. If I ask you, what natural disaster do Venezuelans have that innate ability to resist it and not affect them at all?
Nelson: We are in solidarity, yes.
Felipe: But it has natural disasters or not, they are a wonderful country, if we take out the politics.
Nelson: Recently yes, a natural disaster is happening here in Maracay but hey they are counted like that, it is unfortunate, but natural disasters, well, yes, we have had a natural disaster for a few months that there is an oil spill that he has not been able to control and it is unfortunate that the Morrocoy National Park, one of the most emblematic parks there is, has been being destroyed for a month.
Felipe: And there is no way to solve it
Nelson: And they don’t want to and I don’t know.
Felipe: Well between disasters, poor patient care, the important thing is that we are still alive, we continue working for a better world, I have always believed that all leaders of patient organizations have something of a super hero, of dedicating our lives and not They will not appreciate it either, I think we do it with the love that implies that we have to be human beings I want to leave you with this reflection today from Sister Teresa de Calcuta, they asked her once: listen to what you do is just a drop in the sea and Sister Teresa replied that even that drop is necessary, I feel that we do a job from drop to drop but we generate a change that makes the world better, I don’t know your opinion on that.
Nelson: I hope with this project that is being developed in Latin America, of which we are coordinators, to know the real health situation of each of the patients and the situation with the patients, I hope that this conglomerate of information can To really lead us to improve the situation in Latin America, I think that a great step is being taken with this project because it seeks to know the situation of each one of them, it is evident that there is no universal health as such, it would be magnificent and much less on the other side of the world, nowhere, I don’t think there is, but I have the hope that if we continue with this project and we can expand it with new projects, always oriented to these, I think that soon we could be better, all countries In Latin America we could be better,, directed, oriented, towards what we want, a better health system, better treatment for patients and that we really can among all the countries to put pressure or force ourselves so that we are all better.
Felipe: God willing and Nelson, it is always a pleasure to talk to you, thank you all for listening to us and see you at the general meeting of all organizations. Thank you very much and take care everyone.
Nelson: Bye Felipe and bye everyone.
Felipe: See you, thank you very much.