I belong to the Association called ASUL, Uruguayan Association of Leukemias and Related, we cover chronic and acute myeloid leukemia and other types of leukemia that we are covering from there, and I am the Vice President of the oncology group.
Felipe: Welcome my dear Gabriel, he represents Uruguay in this group of countries that we are interviewing to be able to unite in a common cause among all the countries, we were supposed to get together in Costa Rica this year, right? a tremendous program and unfortunately with the coronavirus we lost many of our dreams, but still we wanted to talk with each one, after these interviews we are going to hold a meeting of every 3 countries so that we can talk about all the problems and basically compare how it works Every country, then, Gabriel, introduce yourself to the whole world in this beautiful CML community and tell us what your organization is called who you are, I already know.
Gabriel: Good afternoon, we have been talking for a long time with my friend Felipe, my name is Gabriel Pirelli, I belong to an association called ASUL, it is misspelled, with “S”, we cover chronic and acute myeloid leukemia and other types of leukemia that we are covering from there, I am also a member of oncology groups, that is, I am the vice president of that group, this year has been quite hit with what is the crisis and everything else, the coronavirus but hey we continue to zoom, through other platforms but it is not the same, that is, we have quite serious problems here in Uruguay and with what is the treatment not so much, today the authorities changed, that is, we have a lot of problems because we had good access to the authorities of the whole country, quickly, today we have to introduce ourselves as again,Like redoing all the contacts we already had, then that is costing us a bit because they do not attend to you, because they attend to other needs, but in what is the association, what is the network we are quite communicated in this problem.
Felipe: Yes, I believe that this coronavirus has strongly affected all countries, especially cancer care, which has been relegated due to the delivery of drugs, that we have serious problems in all countries.
Gabriel: Luckily here and I say luckily, we have a national resource fund that works, let’s say basically between half state and half state, the worker is deducted an amount, that goes to that fund, the government the same and companies too, then a great fund is made that everything that is high cost or high price some authors who say, high cost, well, that goes to all that fund and it is not paid there, the state gives it to you and they comply, That works and works well, I almost wanted to replicate it in many places in Latin America that we have been because it seems that it is a very good system because it is a system that is created, that feeds on the whole society, both private and public, so it seems to me I don’t know because it cannot be quickly transpolated to that system that works and here it works.
Felipe: You know this character who has long hair and every time they ask him about something, he refers to UFOs? well I always, when you say that I say: corruption, then, you are telling me that and my head says corruption, because it does not work in other countries: corruption.
Gabriel: Not here, luckily not here, first of all, to be corrupt in Uruguay we have to be very clever, because we are very few and we all know each other.
Felipe: Don’t take me there please.
Gabriel: On any side of the Republic, I will tell you a short anecdote, here 360 kilometers from my house, I rented a house, the one next door lives 10 blocks from here, the one who went to live there to be those days of vacation and we started talking. I lived 10 blocks from here.
Felipe: You told me anecdotes that the President was there, he had coffee somewhere, the former president, what are you doing, pepe?
Gabriel: Hence the current President, who is also far right, has that link, so I say that being corrupt in Uruguay you have to do it very well and this national fund system works and in turn we have a very good health plan, or In other words, in previous government they threw a lot into the tooth and well, there are problems like everyone else, that for a patient with Chronic Myeloid Leukemia is quickly to treatment.
Felipe: And he has timely and precise attention, which is the incredible thing, which is what does not happen in other countries, we do not have the capacity to have that opportunity in the attention is as an example.
Gabriel: We have problems like all of Latin America, minor, once I had to meet with the Minister of Health, at that time the Uruguayan was very well positioned in Latin America, now too, so I told him that the only thing that we started from a flat Different from Latin America, we have other problems here, the problems of the capital and the interior, that problem exists, that to locate a hematologist we have to travel.
Felipe: Leave me there for a bit because later I have to ask some specific questions about how the interior works, which is a problem in all Latin American countries, that is, that is very strong, but let’s start with a general term, let me show you our template which is the one that we have worked with in all our countries and we have data from all our countries to see if we function well, are there still 3 mm of inhabitants?
Gabriel: 3mm 400 thousand, we are quite close to what we include here in our payroll, and is it true that there are more cows than human beings in Uruguay?
Gabriel: Well it’s true. I think that now we are in 11mm of head of cattle, yes, it cost me, once in Colombia, that they laughed at m + i because I said there in Uruguay there are more cows than people, and they are right, we are very exporters of cattle standing like beef cattle, right, so yes, right? Well, it’s one of the little things that we have in Uruguay, that we beat Argentina.
Felipe: No, no, I still have to have that discussion, we can no longer bet, when all that happens, I in Alianza Latina had obtained it at the hotel, I have always told it, let me show it bigger, I had 2 hired grills and meat for you to prepare the roasts, but the truth of this was not given by the crisis in Chile. Well, it has a President, they adhere to the International Covenant on Economic, Political, Social and Cultural Rights and I think they are the only country in Latin America, because they give their patients access to complete health. Let me read this to you to continue talking directly with you, right? All these issues, are they an executive government of 5 years? With a presidential government? A legislature that also lasts 5 years? and the public health expenditure of GDP is 5%,
Gabriel: Yes, first of all we have a very good middle class, we also have a powerful class that we always say are 300 families that more or less support what Uruguay is, we have a very important middle class, which is the one that supports the most. The entire system, we obviously have poor people, we have assistance plans, that is, but what is health, what the previous government did, is to unify what, let’s see, the people who worked did not have the possibility or the right to go to a common hospital because prepayments and all that will not be charged, so today yes, today the worker may have the right to go to a public hospital and you do not have all that expense that they have with the copayment, many things have been done in health matters that we hope not to lose in this legislature,not because sometimes the cuts and some things that were obtained are valuable for the people, of value for the most needy people, because we will understand that it costs a lot to go to the doctor, if you are from a mutual insurance company because you have to have determined money for everything that involves both what is medicine, as orders, as tests.
Felipe: That’s where 50% of out-of-pocket spending comes in.
Gabriel: Exactly, it is very high, and well, if you are in the public that expense you do not have it, because although all Uruguayans pay it and cut, but hey, it is much more possible to be able to go to do analysis and things because Sometimes people do not go and are not attended because they do not have that money to spend, although they have the right or the possibility of going to a mutual fund in this case.
Felipe: You have imatinib, dasatinib and nilotinib.
Gabriel: We have 3.
Felipe: And the others don’t.
Gabriel: The others are quite, very difficult because we made arrangements for the other lines and well they said that the patients who needed that were very few, so like the government couldn’t spend on that because the lines that are working and working well:
Felipe: Perfect, but what if they have a mutation like 3125i?
Gabriel: Like the 315i? well, that is achieved, that is achieved because the State does attend to those cases.
Felipe: How long does it take once you are diagnosed, sorry, but since you know that this issue of thrombosis gave me, I feel a little pain and I start to play the shot because it is not a clot that is coming out, but, no, it is not that , but I get silly, ok, but how long does it take, I mean, I feel bad, I went to the doctor, they did a blood test, how long does it take for my pill to arrive once I was diagnosed.
Gabriel: I’m going to give you, I’m able to do it as an anecdote, when I paid for the diagnosis, that was one morning, I arrived at the hospital, they did the analysis, they transferred her to what is the Maciel hospital, a hospital reference, very good hematologically, has a very good unit, and we were diagnosed at 11 o’clock at night that same day with treatment and still at that time imatinib was not there, there was interferon, but we already left with interferon From there, today they go out with medication, it is quickly diagnosed once high white blood cells are detected, other symptoms, and we are going to say that everything does not take 30 days to be inside the system and you with imatinib, with dasatinib or nilotinib depending on the treatment you need.
Felipe: The PCRs, for example.
Gabriel: There are PCRs depending on who they belong to, if you belong to a mutual insurance company it is a high cost, which we had, which we did go down still without much success but if you belong to a public health system it is done, because what happens, to receive the medication, sorry, to receive a medication every 3 months or six months you have to do the PCR, the cost sometimes of the PCR, we are talking about $ 200 or more, so that sometimes costs, but of course they demand it, but we are As if fighting for the part, we want that to be able to also, also be it, to verify and lower the cost, once we made an agreement with the Pasteur Institute but then some problems came and it could not be achieved so that some PCR could be reached do there and the person does not have the necessary money, but more or less there is always a solution or something to be able to achieve,that is, because without that they do not give the medication.
Felipe: Of course, because if it is evolving well or if there is any change, the medication must be changed, and tell me about the hematologists in Uruguay, how do they work? Are they all in the capital?
Gabriel: Well yes, there are very few hematologists.
Felipe: I have the impression that in Uruguay there are not many hematologists either, do you have a figure of how many there could be?
Gabriel: I think there are 100 hematologists from 100 to 120, I think, I do not want to lie too much in the figure, not be very precise because they are mixed among oncologists, perhaps there are fewer, what happens is that they are very centralized, to understand it a little, there are 3mm 400 thousand but in Monte Video, the largest town, that is, the smallest territory there are 1 mm almost 600 thousand people, and then if you divide it into 88 thousand people per department, per town, then what happens They are very centralized, the hematologist, although there is a hematologist somewhere in the interior, they belong to the mutualist.
Felipe: And with that large population, I have the impression that there are not even many public hospitals in the interior.
Gabriel: We are talking that this is an average, there may be cities that there are 200 thousand or 300 thousand but if we do a quick average it is that, then what happens, they travel and stay a week or stay a few days but come back, that is, What happens when there is an emergency they return to what is the capital, many patients have to come to be treated in the capital and well the system gives them some help for the passage but it is problematic, it cannot be attended and we know very well well too and we say that in the association that always has to say that they have the CML to be treated well, because sometimes it is not known.
Felipe: In other words, in the end, if you are in the countryside, and the LMC detected you, you necessarily have to go to the region or if you are a public employee you have to go to a mutual and that is the same as going to the capital.
Gabriel: Almost always, that is, if you belong to a mutual company, more or less the agreements you have in the mutual company …
Felipe: Because mutual, it is for us all to understand, they are health insurance, right?
Gabriel: Yes, they are health companies, they are private health companies, there are insurance that are other things than there are private insurance, but we are going to say that it is a private health company, that it provides certain benefits and that the foot of the basket of benefits provided by the state that the private mutual insurance company is obliged to provide.
Felipe: And how many benefits is that basket? How many benefits are they?
Gabriel: Regarding the total benefit.
Felipe: Yes, how many benefits, because that interests me, because in all countries there are a certain number of benefits.
Gabriel: When you talk about benefits, it is the part of …
Felipe: How many pathologies
Gabriel: ahhh well, yes, all pathologies are covered, but what happens is the treatment they give you.
Felipe: Ah perfect, that is, he has a pathology and a treatment, but they realize that there are 7000 rare diseases and 6000 normal diseases, that is, I do not know if there is a list that covers all countries, I know that in England They do not let anyone die, not even in Spain, I have the impression that there is none either, but in what other countries, my friend, they let us die, give me one …
Gabriel: We fight it, much of that basket is the updated part, because sometimes there are treatments that are outside of that and well, there are radiotherapies that change very quickly and they still continue with that and then people have to pay why not …
Felipe: We are facing an incredible crossroads where there are patients with CML who are going to stop treatment because they no longer have leukemia and that will happen throughout the world, so we are in a year that if it were not for the coronavirus , we are in an incredibly important year for cancer treatments.
Gabriel: Well, that is an issue that you achieved that is very tasty and important. I think that the associations have to achieve good communication about that because when the doctors say the suspension of the treatment people are going to get nervous, bad, exactly, then we have We have to go out and explain, we have to have a lot of information about it, a lot of statistics in the world, what is happening, what we saw in Lisbon last year, that is, we have to be very precise and very convincing and we also have to be very convinced that that will be safe.
Felipe: In other words, it will happen, so we are working with the doctors, so we have to convince …
Gabriel: Felipe, we have patients with 20 years of evolution, 25 years of evolution
Felipe: But they have to spend on those patients who are not going to enter, they are new patients, those who were discovered in time, those who have, there are a series of conditions in the list to remove the treatment that is quite specific, but it goes to happen, that is, the patients he has such as María who has 25 years of treatment will not take it away or Cristian who is 20 years old, but new young patients who are just in the first stages of the disease who have lowered at undetectable levels.
Gabriel: Yes, I misunderstood that, Felipe, they also have to have a fairly long period to get the treatment, that is, I think that it will not happen that patients with a year of evolution can get the treatment, they must have as of 5 years forward then, but all that also if a daily pill works for me and I’m fine, then say no, no, don’t take any more, we have to be very clear about that part.
Felipe: And the monthly PCR analysis, so there are a number of conditions but what is going to happen, which is there in the table and that in realistic terms speaks about the cost of medicines in the world, the high cost of medicines in the world and I think there is an issue there that we have to use patient organizations, we have to have the leadership that organizations have in Europe, we have to have a continuous voice in all countries about this change that We are also worrying about the governments’ pockets and we want there to be a solution for high cost pills, or high cost treatments, or high cost chemo therapies, and we are not associated with any researcher, laboratory, politician , what we want is the best care for the patient.
Gabriel: Totally, but that’s why I’m telling you, but we have made a lot of progress in the information part, we have to be clear very clear on the information issue, doctors have to be much clearer, because they are responsible for saying, why give the assurance at least to the patient that this treatment and that he does NOT take medicine that if it works, it will continue to work and it will continue in the same stage or with the same security that he has been living, then it is a challenge, well because There is a medicinal cure, that before the only cure was transplantation, today the medication can become a cure, but it is good, it is very good, but we are at the hinge of this,Because for future diagnosed patients who may already have a certainty that they have a treatment for a long time and that later they can leave the pill that will already be installed, today there is an uncertainty about it because we are on that hinge that is going to last a few more years, but hey …
Felipe: But it’s super interesting, now we don’t want to lose this original idea of the information that we have to deliver to organizations because with you always the possibility of talking for hours and hours and hours is interesting, but look, tell me if there is a hospital that handles everything cancer in Uruguay.
Gabriel: Yes.
Felipe: And that it has that condition and if there are modules of those hospitals in regions.
Gabriel: No, there is a central that is in Monte Video, it is called INCA, which strictly cares for cancer.
Felipe: INCA, notice that I in Brazil at the last meeting of Alianza Latina, where I am Director and I am very proud of that, several INCA leaders met, that is, INCA directors, from about 3 countries, and they talked, I know the director of INCA in Chile and she has a fairly close vision of patient organizations, there is a connection between those INCA directors with patient organizations that have the same objective, which is to save life, but with politicians It must be said from that tone, I always say the INCA, which are these giant octopuses, they would have to have tentacles and cover all hospitals or care centers throughout the country, not in all countries, does it happen in Uruguay?
Gabriel: No, the tentacles work because INCA belongs to the State, where it works at the State hospitals level and that is how it works, then also, they continue to centralize those patients, if they belong to INCA they go to INCA and travel to what is Luckily, the capital today has a place where a family member can stay, but before they were gone, very wandering, that is a great challenge that Uruguayans have, because of such a small population, so it is capable that sometimes they are not It justifies having many things installed and if not, they do not work well, such as the part of alternative medicines or specialized medicines, but always as many of us die in the capital.
Felipe: I’m thinking how many veterinarians there should be in Uruguay
Gabriel: How many what?
Felipe: How many veterinarians, it is better to take care of cows than human beings, it has no scale.
Gabriel: I don’t know if veterinarians are very well distributed, yes, that is, in that “fight” we have, that patient who is well cared for but sometimes very far away, has to be transferred or monitored by phone, luckily today the platforms that Nowadays there are possibilities of having a quick consultation because in many Institutes what they did quickly is to have a possibility quickly to have a consultation, so now it is not, now I have to ask, I can call by phone and that also has to be used a lot technology, because sometimes depending on the speed of the query, you have to act but sometimes it is a query that can be done via these platforms that are being generated today, or another, so, I say you have to use all the technologies towards everything which is for the best quality of the patient.
Felipe: Yes, of course, in the end, well, I always say that the Uruguayan in an example about how he has humanized health, it is not because you have problems but I remember that sometime in a meeting I called you on the phone and that you were with some minister, I no longer remember how many there were, and you said: noooo, the Uruguayans have the same problems, and I sent you a message, hey, you are saying that they are without medications and you said they had all the medications and I raised the hand, I’m calling Uruguay and you are lying … so I think, you are a small country but you are responsible to the people, you have gone beyond the problems, you have said that people are cured.
Gabriel: But we already, well the part of some medicines that are not in the basket and that if we had to go to court, of which much has been achieved, here is a very good study at the University of the Republic level that he attends these cases for free and almost everyone wins them and that is very good, there is a specialist in winning lawsuits or making lawsuits with medicines, we have a position in this regard as well, that sometimes the doctor has to be very clear at the time to give and be very responsible because sometimes you can …
Felipe: There cannot be doctors who experiment with patients, not even without the patient’s authorization, that is, they cannot come to do experiments with me and make me suffer by lengthening my life unnecessarily, then, if there has to be a necessary limit.
Gabriel: We always in those cases that are very special stages, which are the last stages, which begin that I have to take a specific drug, that the doctor also has evidence of that drug in the stage that that person is going through, Because sometimes the scene of uncertainties that are not real, then, that also has to clarify it, so if we have evidence from the stage that person is going through and we send that to those who are public health or whoever, to the minister, which is the one who decides the last case, I think we are much more supported, because sometimes the doctor prescribes what you need and then you find a very important bureaucratic system that sometimes you do not know where to go,So it seems to me that the evidence when you say dasatinib is going to provide you with this quality because there is this evidence that in the world we have more than 80% remission, so that gives security, patient security, system security, Physician safety, then, I think the evidence is very important.
Felipe: I totally agree and in order not to take away the whole day, tell me a secret, are Uruguayans happy?
Gabriel: What I’m saying is that we are always more or less laughing, in my worst moments I laughed and once they made me blush because I was laughing in the situation I was in and they treated me crazy because this is sounded, it’s crazy, because In a worse moment of my life than you know it, I also laughed and it seems to me that although happiness is personal and I contribute to my happiness and I believe that when I am happy you are happy because we are all going to be happy, then it seems to me Happiness is very personal, each one of us builds happiness, so I build it every day.
Felipe: I am a specific witness of that, I once wrote on my facebook that Uruguayans were so happy that they woke up in the morning and the rainbow was waiting for him, he took him to work and brought him back, and one day Fernando that he is from Argentina, in a hotel from now I don’t even remember which hotel we were in or in which country …
Gabriel: Mexico
Felipe: We were in Mexico and he yells at me, Felipe come, come, come, come, as desperate and Gabriel was at the hotel reception and the glass was making a rainbow on his feet, it is a thing not to believe, so I I have photos about the happiness of Uruguayans.
Gabriel: It has happened to me in elevators and it always happens to me, we have problems like everyone else, we also have the pessimism of society, also everything that is in all places, what if we are a very friendly people in that if perhaps in terms of the kindness and it is that the other make you feel good I will think that if it is a quality of Uruguay.
Felipe: I find all of you incredible, to end this meeting I want to say these 2 things, the first man who kissed me is Gabriel’s friend and the second man who kissed me in my life was Gabriel.
Gabriel: That reception was very nice, I always remind him that when we have a conflict, Felipe should not forget that I am the second man to kiss him and he was very shocked by that fact because the truth was that it was in Uruguay and I am very saying and this rooster that happened to him, because Chile was not very …
Felipe: In that, in Chile there were not many kisses, Chileans were males at that time.
Gabriel: That was in 2010.
Felipe: 2010? Imagine, and an old man who I found wonderful jumped up to kiss me and I was going to hit him and Gabriel grabs me and kisses me too, but wow, what great Uruguayan people.
Gabriel: And I kiss him every time we see each other
Felipe: And I shave so it doesn’t itch, so it has been a pleasure to have talked to Uruguay, I’m going to stay talking with Gabriel, the idea is that we get together and talk in Latin America and that they see in the rest of the world how things work in Latin America and compare. All countries have the same problems, but they are going to see that Latinos tend to be quite similar, so thank you Gabriel, I’m still going to stay talking.
Gabriel: Thank you very much and greetings to all of Latin America and to the whole world.
Patient Journey
