Silvia Díaz Ruíz lives in the Province of Heredia in Costa Rica, has been a Chronic Myeloid Leukemia patient since 1998 and represents this AGALEMO Association where they provide support to patients or relatives and the general public on Chronic Myeloid Leukemia and Myeloma .
Felipe: Hello everyone, it is a pleasure to greet the entire CML community again, I have never learned to say it well, today I have the pleasure of being with a friend of many years, who has seen her in all colors these years, We have accompanied her in her sufferings, we are pleased that she is here with us and I am with less hair, hahahaha
Silvia: And I colored.
Felipe: A but fantastic, let me introduce you, my dear friend Silvia Días, Silvia Díaz Ruiz or Silvia Díaz say to herself.
Silvia: Yes, Silvia Díaz Ruiz.
Felipe: Silvia Díaz Ruíz from Costa Rica, from that beautiful country.
Silvia: Hello, good, Silvia Díaz Ruíz from Costa Rica, I currently live in the province of Heredia, I have been a patient of Chronic Myeloid Leukemia since 1998, I am a veteran in the field.
Felipe: Wow. You are 22 years old, you started with Hidrea.
Silvia: With Hydroxyurea, then with interferon and then we started with inhibitors in 2003 and since then.
Felipe: And what inhibitors are you taking?
Silvia: I am currently taking Dasatinib, a generic from Rafo or Asofarma from Argentina, it really is a generic for those of us who have had that experience from 2011 of very good quality in terms of its effectiveness and the side effects are really quite manageable.
Felipe: So you feel good, in addition to all these problems you’ve had.
Silvia: So, of course, in 2017, with breast cancer, but we have been qualifying between one treatment and another.
Felipe: I am going to ask questions that may be very private but I think of this community that is quite protected, right? Are they treatments that can be done at the same time?
Silvia: Actually during the chemotherapy period, rather the year due to radiotherapy, the Dasatinib was better suspended, because the chemo was going to lower the cells so much, the hematological values, they saw that it was with absolute, treating with a treatment if it went to be eliminating on the other hand, but the body really gave me its sensitivity during that time in the treatment, then it really showed the success of Dasatinib and then what was chemotherapy for breast cancer and radiotherapy that is in the treatment After 11 months, as soon as I finished radiotherapy, I returned to Dasatinib and the anti-hormonal one that I am taking together, the anti-hormonal one and Dasatinib.
Felipe: Yes, that is the necessary treatment to take care of you.
Silvia: Yes, so that maintenance for those 5 years with the inhibitor and the anti-hormonal agent, we have really been observing it, I do not take it together, I take one in the morning and the other at night, so that each one makes its effectiveness for a period alone, but I’ve done relatively well …
Felipe: Good, we all need you.
Silvia: Thank you
Felipe: Then it’s not your time yet.
Silvia: Definitely.
Felipe: We are tough nuts to crack, here in Chile it is said like this, I don’t know how it is said.
Silvia: Yes, a tough nut to crack.
Felipe: Tell me Silvia, how your organization works, what to do you.
Silvia: Agalemo was born a bit parallel with my diagnosis, although I did not participate from its main beginning, in 98 it was founded by a Multiple Myeloma patient, Doña Amalia, she travels to the United States and sees how support groups work but more That in everything is for the patient to join, talk and start looking for solutions together as a patient, then she founds that group and we see the sign later in the hospital consultation and we call Doña Amalia and that is when we participate in the groups support, at that time it was very basic, we met one afternoon once a month or every 15 days, we had coffee and talked a little about how we felt with Hydroxyurea,with those who were taking Busulfan at that time, which were a few, and by then clinically it had been said that Busulfan was quite toxic and then it was being stopped, but in the country there was a remnant and they were finishing giving it to some patients to whom Hydroxyurea did not have much effect on them, they gave them Busulfan and we began to talk about interferon a bit and that’s when, seeing that there were therapies and that they already talked about, for example when the Imatinib studies began that those of South America and we wanted to find out how to participate, at that time we did not know well what clinical studies were, everything that had to be fulfilled, so we already arrived at the end of the clinical study and José Enrique could not enter,But there it was, let’s say, an achievement and we began to have as an organization to see that it was a need at the country level, to participate in clinical studies because we were totally lagging behind, the bioethics code regulation on that, then there were many taboos, that that It killed people who produced strange mutations, so there were a whole series of myths in that time before 2000, which they did not leave then, the opportunity for clinical studies had been closed.the opportunity for clinical trials had been closed.the opportunity for clinical trials had been closed.
Felipe: There was a theory that it changed genes or inhibited cells, there were a lot of stories, of these conspiracy stories.
Silvia: Yes, and then there was not much opportunity, and then we began to contact other organizations from other places, but only very few, we were like very raw, newsletters and we began to dialogue a little more with the doctors, there were doctors who It was scary to talk about support groups and sit down with the patient, they felt that their authority was being taken away and there were others who said excellent to help them financially, but we do not want to help in this way, we want to help the patient, who understands that it is the medicine that is being given, why it is being given, that he has the opportunity to ask and speak, that was our work in hematology and with the support meetings that the patient was a little more aware of what he was taking, not because the doctor told me,but because he knew, he was aware of what he was taking, or of the importance, because in this journey since then from Agalemo many comrades in the fight have fainted because many were afraid or were exhausted from the medicine or had conflicting ideas, then no, no They followed him, for example, I remember a farmer who arrived, he was from the rural area and he says it is not that I come to get the capsule because these medicines give me a stomach ache, I better take the other medicine, That was 2003 when they were changing us to Imatinib, and then I went out, please come and explain, where is your wife, come and explain why they were people that one saw every 3 or 4 months because of the distance, and then I said no let him see that the medicine will give him a better quality of life for more years, instead,If you continue taking Hydroxyurea, your months are numbered, and then between experiences like this, we begin to live and see that need to educate patients, to seek, for example, here we have the Ombudsman’s Office, they have a department called Quality de Vida, then with them we have also been training, we brought them to the association so that patients could see that the rights of patients were not a dead letter in the law but that there was the possibility of reactivating it or making it effective and enforcing it, that that It is very important, let’s say one did not go much to the clinics that we called him, near the communities or the hospital and he was like with typeface RIGHTS OF THE PATIENT, and in letters as well as number 5, and then there were all his rights but to the hour of the hour really did not apply.
Felipe: Of course, you have to develop that advocate to be able to do that and I believe that patient organizations are vital to be able to have a frank and direct communication of the real situations of what is happening.
Silvia: Yes, let’s say here, a blessing that we always say is that percentage that you see of access to the public health service, that if you work and contribute you have access and if you do not work and have such a serious oncological diagnosis or have a permanent illness begins to have a study of the social side and the state has to insure the person.
Felipe: That’s what we saw in the statistics of 80 percent of the public service, right? Against the 14 percent of the private service, so it has a fairly large and strong public system.
Silvia: Yes, so for example in Chronic Myeloid Leukemia there have been very few patients that we have realized that have used the private system or insurance to buy the medicine, most of them use it through the public system and they have the opportunity to do so. If you are working, you must pay contributions and if you cannot pay it, they do a study and pay a monthly fee so that you are insured, and the last part of the insurance by the state, those in extreme poverty, migrants, there is a clause of rights humans and refugees where the insurance gives them treatment.
Felipe: Look, I’m tempted to emigrate to Uruguay or Costa Rica, so get ready because I’m going to get to one of the 2 countries.
Silvia: Well, welcome and that yes, help us with the fight.
Felipe: Yes, please, that’s what we’re going to be there for. Tell me, are there 3 million 900 thousand inhabitants or 5 million inhabitants, I don’t remember?
Silvia: 5 million.
Felipe: 5 million inhabitants, they are a beautiful and small country, with a tremendous volcano in the middle.
Silvia: Yes, we have volcanoes everywhere, volcanoes surround us there, tremors everywhere remind us that we have to be alert. If of that percentage in all that time they have already been created before Agalemo there were other organizations that worked in hospitals, for example in Calderón Guardia, where they began to found the support group for hematological oncology patients, there was already a cancer foundation, that is a foundation that is created to support cancer patients, to date they are a very large number of volunteers, they work directly in the hospital, many are survivors, their relatives are also survivors, as a result of that Doña Amalia is the same and amplifies its coverage to the San Juan de Dios Hospital, where I attended, and from there we began to make the larger group,
Felipe: I would say that this year the vision of the world changed, right?
Silvia: Exactly, because before they were waiting for the monthly meeting to see us, on the other hand, every day now, every person has a condition, they do not like the treatment and how you felt and you gave this or that, and then the new patients are go: no but better take the medicine at lunch, with heavy food.
Felipe: They have to talk to him, eat banana, prepare for before the pill.
Silvia: Exactly, you have cramps, eat more bananas, eat more bananas, so the support group has been a lot in that way, one would like the patient to adhere more but like everything there are some who stay on the sidelines, let’s say they seek support alone when they need it leading a normal life.
Felipe: I have a theory about these patients, they are patients who try not to know about their disease, and it is also fine, part of this group who know they have silent support but when they need us they always remind us of our organizations and appear They are also quite important people and we know that our influences always go further than the patients we always have.
Silvia: Yes, correct. For example, we have always been happy that in this niche that we have to work, right? That called us to work at the time in 2000, the prognosis for Chronic Myeloid Leukemia was very dark with a very short life
Felipe: Always giving years, 3 years maximum.
Silvia: Yes, exactly, and later when we see the inhibitors we had the opportunity, in fact it was not me, I even fought for the first line, but there were some patients ahead, who managed to put an appeal before me, although The appeal for protection is a tool, one would not wish not to have to use it because it is like putting the law into force but they managed to win that appeal for relief and then the other patients began to pressure me to speak to the doctor with more property and they already started to change the therapy, after that many years it was a treatment that had to be justified a lot and everything, today a patient is diagnosed with Chronic Myeloid Leukemia and at once they give him the prescription and go and withdraw the imatinib treatment at the pharmacy .
Felipe: And that’s thanks to the organization
Silvia Yes, yes.
Felipe: And this is how we change public policies throughout Latin America. I believe that there is no organization of Chronic Myeloid Leukemia patients that has not led these policy changes.
Silvia. Correct, and then when the other lines come, we have to fight for Nilotinib and Dasatinib and currently we are very happy with respect to the generics that have entered, I hope they continue to maintain the line of good quality, because unfortunately for our pockets of public institutions, it is a reality that they will look for an alternative
Felipe: The most practical, there we must be careful for side effects.
Silvia: Yes, to be watching over the side effects and the effectiveness, because sometimes a doctor said if it does not do so much side effect, you have to ask him if it is having an effect, if the person, if it is really fulfilling its effect.
Felipe: Because deep down we don’t know if he’s taking talcum powder or not.
Silvia: Exactly, of course.
Felipe: Tell me, just to sort me out with the idea, do you have Imatinib, Dasatinib, Sprycel, with a copy?
Silvia: Copy, yes, generic of Sprycel.
Felipe: And Ponatinib, he also has an original or a copy.
Silvia: No, copy.
Felipe: It has the originals and copies in the country already installed, but giving more copies to patients. And the other lines, let me look for the name because I am reaching an age that I forget things.
Silvia: Yes, the first the Imatinib we have the original and we have a copy, which is only last year there was a massive change to the copy but we have still been asking patients to monitor very well, some that copy has It went well, from what we can investigate, is that it is a copy with a good reputation, if they have not liked it so much that they continue insisting with the doctor to give him the original so that he does not lose his quality of life.
Felipe: And have they heard anything about Bosutinib in your country?
Silvia: No, not yet, they have reached Dasatinib and now Bosutinib.
Felipe: The good thing is that you can still talk with the doctors, you have control of what is happening and have a fairly important coverage of patients, I told you before the interview that an NGO has coverage of 10 and 15 percent of all patients, but you up to 50% of all patients according to statistics
Silvia: Yes, as a statistic, let’s say we have been able to recover those people as I was saying, we succeeded, there are doctors who sometimes recommend the organization, which is very important, some of them remain neutral, but I don’t say because later they throw the law on me and put me in an appeal for protection, but no, there are others who say: I better leave that to the organization, patient education, then for example when a newly diagnosed patient with too much anxiety, then one tells him the route, and at the next appointment from the doctor as you have it as soon as every 22 days, request the referral for psychology if you have financial problems request the referral for social work, because if we say we give ourselves to the tasks of helping financially they fill us with patients, but we do not have the capacity and we would dedicate ourselves to something else,But if the system has these aids we strongly urge people to look for them so that they are registered, who are people who need these aids, because sometimes families go crazy, they get stressed by this lack of help and at least If for at least the first 3 months of diagnosis there is a system that supports them emotionally and financially, I believe that the patient begins to emerge on his own again to his routine, because he recovers his quality of life, I can now start working or continue studying the boys.If at least the first 3 months of diagnosis there is a system that supports them emotionally and financially, I believe that the patient begins to emerge on his own again to his routine, because he regains his quality of life, I can now start working or continue studying the boys.If at least the first 3 months of diagnosis there is a system that supports them emotionally and financially, I believe that the patient begins to emerge on his own again to his routine, because he regains his quality of life, I can now start working or continue studying the boys.
Felipe: Or help others, hence the new leaders who can help you in the organization.
Silvia: Yes, that is a point that I believe that volunteering or the new replacement generation would be good to strengthen them in organizations a little more, how we can recruit them to go from being volunteers to being leaders or leaders so that we can have suddenly that replacement or support mattress to also expand the work of the organization, because if in the provinces, although they are close, these links are occupied.
Felipe: Imagine that we are old leaders, well with experience, I did not mean old, we have experience and imagine that something happens to us, I had a very dangerous situation a very short time ago and it forced me to think and where is the replacement, what happens If I die, how does it come, how do we manage to do it, live, what you are saying is super important because if we do not change, if we do not have new generations, organizations can fail and die, you know what has happened in other organizations than in other countries, where the leader passes away unfortunately and it is very difficult to give her the impetus to get the organizations back to work. Tell me, how does the hospital system work in your country, do you have a reference National Cancer Institute?
Silvia: Do we have what apology?
Felipe: Do you have a referral hospital that, a hospital that dominates all cancer efforts in your country?
Silvia: No, they have been working on that project but unfortunately at the professional level of those who want to have the best cut of the research budget, then the hospitals classified type A, here we have 3, the San Juan de Dios Hospital, the Hospital Mexico and the Calderón Guardia Hospital, these 3 hospitals have a very wide area of hematology, onco hematology, they have quite specialized research laboratories, so they share what is the onco hematological part among them.
Felipe: Is it the 3 hospitals in Costa Rica?
Silvia: No, those 3 types A, then there are the others, they are like 3 from the provinces, they are by quantity more than everything by size, they have less reduced resources, but they also have hematology and chemotherapy, and they attend the treatments, they have been working to be able to make a hospital for oncological specialties, but the parts of the pseudo-professionals are still not convinced.
Felipe: It seems to me, I hadn’t heard the word pseudo years ago, I think it’s great that they compete for the budget in the end that’s what they’re doing.
Silvia; If of course, due to our size, for example in leukemia or other pathologies, the tests, PCR or ABL are carried out by the genetics laboratory of the Children’s Hospital, there, the research laboratory has developed a lot, then all the specialized tests or for example breast cancer for a brca1 or brca2 or genetic study, it goes to the laboratory of the Children’s Hospital, then they have had an expansion in terms of equipment and technology resources and human resources to attend other hospitals, others like They want to expand, but I think that if that laboratory is given that opportunity, to develop further, there could be more research and more statistics on how it has evolved to improve cancer treatment in Costa Rica.
Felipe: And that is another interesting question because what I have discovered in this, because what we are doing with José, your husband, which I love, with Fernando and Nelson, is that there are no statistics on patients.
Silvia: No, you have to undermine a lot, let’s say, they are very general, in the pyramid of diseases there are 7 that they focus on cancer of the stomach, prostate, lung, and leukemia, well together we form a whole chapter there, they still They do not put us there in the pyramid of the priority 7, we always fall below, there is not that statistic very often, you have to go a lot then to the center of the Ministry of Health to request that by the code such they give me such a thing, and then They begin: why are they investigating? Why such a thing? Why the investigation? Bring a letter so that you want to sound
Felipe: No, that is not a transparency law, we protect the patient, we don’t want the names, we want the statistics.
Silvia: Exactly, so one tells them, no, not I, what I want are numbers, the real names, that they treat them well, you have them very clear there, we want the statistics to demonstrate, but that part of the statistics costs a lot , and suddenly one finds the statistics very studied, in their postgraduate studies, for example, in Chronic Myeloid Leukemia in recent years there have already been several theses, where hematologists have chosen to do Chronic Myeloid Leukemia because of course the inhibitors came to change the perspective of the disease.
Felipe: To the point that some cases in some countries had to conduct treatment cut-off investigations.
Silvia: Yes, with regard to that we here in the country, that’s why since there is no institute that regulates it, they have begun to give options that doctors to patients with a certain profile and for many years of taking imatinib they They have said you are a candidate for us to explore suspending treatment, in Agalemo we already have several patients, one of them, the oldest is going to be 4 years old or it was now in July, 4 years of being without treatment and they are doing very well , we have others of 2 and another of 1, so we have already been capturing those patients who are without treatment who are in remission, and well hopefully some are postgraduate so they can show us more data because only suddenly so with the academy we can also capture.
Felpe: Which is the most important thing, when patient organizations get involved in the process it generates a totally different raid, medical research is not enough, clinical studies are not enough, patient organizations can create a different cockpit, now tell me, in the capital, how many hematologists are there more or less for a population of 5 million ?, because another problem that we have detected is that all the hematologists are in the capital.
Silvia: Yes, because or I can tell you that there are, to see, 21, to see, 24, 25 they really are like 31 hematologists, and they are in hospitals A, for example Limón, which is the Caribbean, who travel once to the month.
Felipe: But do they have a hematologist there, fixed point?
Silvia: no, he travels once a month, a week he goes and does residence and stays in Limón and treats very critical cases, otherwise they have to come to the capital, then there is displacement, the patient has to come to the capital and then it is when the patient loses adherence to the treatment a lot because there is the fact that they have to come here, either because of economy or because they are lazy, because there is no yes that and well because I am going to the capital.
Felipe: Is PCR done every 6 months or every 3 months?
Silvia: They are really doing it here, if the patients are doing very well, they are done once a year, only when in the first years they are done every 6 months, after 4 they start doing it once a year.
Felipe: Ah, except if there is a problem.
Silvia: Yes, or at least it lowers them, that they have a significant change in the PCR, they are sent every 6 months if not once a year.
Felipe: And tell me, do they have to pay the PCR or does the government finance it?
Silvia: No. Anyway, the health system covers it.
Felipe: Totally?
Silvia: Yes, totally.
Felipe: I have to go to Costa Rica or Uruguay, there is no reason to decide, the condition is incredible.
Silvia: Yes, it is that the health system really, we contribute when we are workers that 9% we put from our salary, the employer puts a percentage of 15% of each employee that he has and then everything that is the state apparatus the government has to pay those salaries and really apart from those, that percentage of the uninsured, that percentage of the uninsured of those insured by the state is a percentage that if it comes out of a fixed budget, then insurance really has a lot of sustainability, we Let’s say when in private it is adhered to and it is because they have an additional plan, that some, let’s say, as you rich people say, silver people, they can have an additional plan so they see themselves in the insurance but every 6 months they see themselves in private insurance,but every 6 months you see it in the insurance so that they give them the prescription to do the PCR, because a private hospital is not going to cover the expensive cost of Chronic Myeloid Leukemia.
Felipe: It is true, $ 1000 for PCR, $ 1000 for imatinib treatment but, each country is different, there are very high costs. And tell me, how many provinces does Costa Rica have?
Silvia: Costa Rica is divided into 7 provinces, we are very close to Cartago, San José, Alajuela and Heredia,
Felipe: You don’t live in San José directly.
Silvia: No, we live next to Heredia, we are 20 minutes from the capital when there is no dam, when there are many cars it takes an hour or more.
Felipe: José, how are you? I want to tell you something, the first time I met Silvia, we got together in Costa Rica in a very important meeting, and they told all the delegates, she has the afternoon off, Silvia fell, I’m going to write her on WhatsApp, the I’m reconnecting, the internet may have been cut off, so let’s wait a couple of minutes. Then I tell you Silvia’s story, we are almost at the end of the interview, I missed a more important question, but we can try again, meanwhile I have a beautiful drawing made with down, there was a blackout there, I am not going to dance, meanwhile remember that this program is developed to know the realities of all countries.
Patient Journey
