Reinaldo Esquivel and Martín Rosales belong to the Mexican Association of Leukemia and Gist – Ameleg in Mexico, they emphasize that it is very important for an association to have a website where they can attend to patients remotely and clarify their concerns.
Reinaldo Esquivel Nuñez from Mexico of the Mexican Association of Leukemia and Gist.
I am Martín Rosales, President of the Association and it is a pleasure to be with you Felipe in this type of innovative interview for us.
Felipe: We were going to do all this in Costa Rica and we decided to do it this way. It is a pleasure for me to see you. I had the opportunity to know your system, we met some hospitals, some openings and this country that is gigantic. How many million people are you?
Reynaldo: We are 130 million people.
Felipe: We are in Chile from 12 to 15 million.
Martín: Plus those who are abroad.
Felipe: How is the relationship of patients with the organization?
Martín: They contact us through the Ameleg website, we have a portal where patients register and ask us questions that are important to them. In the morning I was contacted by a person who tells me that apparently he had been diagnosed with CML but that today they were doing the studies, with the tomography I was going to tell him what type of leukemia he had, I told him no, that I needed the pcr to know What diagnosis is there? Anemia has nothing to do with leukemia, but if it is very severe, it could possibly turn into leukemia, as long as that anemia is not treated. But the doctor is the only one who can do the tests for your diagnosis. That is how patients contact us. And I also did a campaign in 2017 visiting all the hospitals.
Felipe: The State or Country hospitals?
Martín: Those closest to us, so here in Mexico City and in that way the doctors refer us to the patients, and the patients begin to ask the questions, mainly they ask about the discounts on the medicines.
Felipe: How many patients do you have?
Reynaldo: According to the last census, we had about 600 patients, the problem is that many are outsiders when they come, not all are from Mexico City, northern Tijuana, the North Board, the southern part, so they are patients who are registered but change their address or telephone number are people who do not know how to use technology, they are people from the province and they lose contact very quickly. There is a person who is in charge of monitoring patients, doctors, social networks, to see what situation he is in, many died and we do not have the knowledge either but we have 600 registered listings.
Felipe: Let’s talk about your country? That I love him from the crickets, dried fish, tortillas, tamales. Does your President last 6 years in office?
Martín: Yes.
Felipe: Is he relegated?
Martín: Hopefully not, not by law. Those who can be reelected are legislators and municipal presidents for a maximum period of 2 times. Federal deputies have senators for 3 years 6.
Felipe: And you, how is the regional function, are each one regions or states?
Reynaldo: Provinces that each have their internal constitution are governed by a federal or national but each province has its own legislature and local federal deputies and senators.
Felipe: So they have their own administration?
Martín: Yes, each State does.
Felipe: You have 26% of public spending on health and care and 48% private on health.
Martín: Yes, that has been because of the previous presidents who have privatized both the health and education sectors, so that is why the private health service was managed a lot, so INSABI, the Institute of Health for Well-Being, which is the popular insurance, has just entered here in Mexico of patients who have social security but who have to buy medicines, pay their consultations and studies at a moderately low cost depending on the socio-economic study, but right now with INSABI the President promised that from December 1 he would be working and giving free medicine and consultations to those who are at INSABI.
Felipe: That they are the ones who can’t pay anything. But it is incredible in Mexico, almost 50% of the population has private insurance or you earn a lot.
Martín: No, what happens is that there are companies that give you this benefit.
Felipe: You have a per capita of $ 1500 a year, that implies that you earn $ 1000 a month.
Martín is very high.
Felipe: Absolutely because the GINI is at 48.07%.
Martín: If you average it between those who earn many and those who earn few, it may come out on average. On average, people in need of social assistance in Mexican pesos are about $ 700 a month, between 10,000 and 15,000 pesos.
3 years ago they started with the national cancer registry, the previous President with a meal and with a whole fireworks show announced it, nothing more than to appear in the photo which the national cancer institute is the rector who takes the baton of that national registry we have been with this for 3 years and we cannot have a 20% progress.
Felipe: According to my study, I have 7,600 patients in Mexico with CML, regarding the incidence of the disease, for that they should have 1,000 hemato-oncologists and that is very difficult for them to have. As always let me mention The Max Foundation because with you it has a program with 603 lmc patients and is giving help, you are the country that The Max Foundation gives the most help. If The Max Foundation was not in your country it means that 603 people had died, is that correct?
Martín: Yes and no because we had a record of more than 800 people with CML supported by The Max Foundation, there are only 2 deceased, many years because imatinib no longer worked for them and they had to change medications and it is very complicated.
Felipe: How many medicines do you have on the market? Do they also have ponatinib?
Martín: Yes exactly, in fact the ponatinib representative just sent me a message because a patient requires ponatinib.
Felipe: And do they have nilotinib?
Martín: Yes, nilotinib and dasatinib, the advantage of imatinib is that it is obtained more economically until January 2020 because Novartis removed the discount and right now we are handling a generic that promises many hours for the patient. There are patients who do not like to take it because the pill is very large, we investigated with the laboratory what formula the generic imatinib brings, and they have 90% of the original formula.
Felipe: It is not a bad thing.
Martín: Yes, exactly and we have been taking the generic for 3 months now.
Felipe: And there are no side effects?
Martín: Until now there have been no drastic reports, if there are more discomforts from bone ailments and some who want to drown because the pill is very large, that’s the least of it, the important thing is that the disease be controlled, and the In the case that I was telling you about Ms., I am concerned because she is already 8 days old and is taking generic imatinib.
Felipe: And that can be the cause of a side effect.
Martín: Exactly and that imatinib is not working for him.
Felipe: Or that he was given a coronavirus.
Reynaldo: Hopefully not.
Felipe: I have not heard of a patient with CML who has a coronavirus. They take great care, in Latin America there have been no reports.
Felipe: How do you confirm that the medicine has quality, is there an agency that authorizes it?
Reynaldo: In this case there is an Institute that is taking care of the medicine that is entering.
Felipe: Can people do the pcr, is it cheap, is it expensive?
Martín: It is expensive, Novartis has been covering the costs of these studies while imatinib had the normal patent, but now that the patent has been lost, there are problems getting them to do the pcr.
Felipe: Are people doing it at home 6 months or every 3 months?
Martín: No, every year.
Felipe: Every year?
Martín: Yes, and they already stopped doing it to me and I have to demand my rights so that they do it to me by the social security.
Felipe: It is the way to control the disease
Martín: The doctors are reluctant for Social Security to carry out these studies because, according to them, these studies do not work because the institute does not have the capacity to do them. But the idea is for it to improve, I am going to start doing the work to to improve these studies and give the results that we patients need.
Felipe: Is it serious because how they control that the disease is kept under control with undetectable levels, how strong because if you can’t get a pcr?
Martín: They are doing it in a particular way so that patients spend because the pcr that has a low cost in social security when it should be free,
Felipe: Not in all countries it is free but it should be covered by social security systems, it should be insured.
Martín: Yes, nothing more than the previous governments assigned a certain amount to the state for health and used it for the campaign and did not invest in health, that is why the statistics indicate a certain investment but were not met
Felipe: A friend of mine said that as long as there is corruption in Latin America there will be no health.
Patient Journey
