María Valdebenito is from Chile, represents National Corporation Maxivida, is one of the oldest patients with CML in Latin America (24 years) and has been treated with all medications: Hidrea, Glivec, Tasigna, Dasatinib, Ponatinib.
Summary Interview with María Valdebenito on April 13, 2020
Felipe: María is a patient with CML, she is the oldest patient in Latin America, she has received the entire line of treatments.
María: I am María Valdebenito, I am from the Maxivida Corporation since 2006 when I started taking glivec, I have lmc 24 years ago I started with hydrea glivec, tasigna, dasatni and polatinib, I have been for about a month and a half and I am fine.
Felipe: I have the honor of working with her, we have been presidents and vice presidents, as directors, we know the reality, it is the intention to work and teach Chile how our health is.
Mv: When I found out that I had CML it was very complicated, the survival was from 3 to 5 years with the hydrea but I beat that part and at 9 years old I never made a change until I came to a new medication, now That has changed, now the patients come and we guide them, we help them, it is different, because at that time I was alone, in 2006 when I came to Maxivida with the medication and that was easier.
Felipe: In those times The Max Foundation gave the medicine?
Mv: Yes, I received the glivec from The Max Foundation 2 years.
Felipe: She says 2 years because after we won, we managed to get the medicine to the government delivery and it was like in 2012, not Maria?
Mv: But it turns out that patients who received glivec from The Max Foundation who have lmc and still receive it from The Max Foundation.
Felipe: Let me show you some information about the work we are doing. The only lmc association that exists in Chile is us Maxivida Corporation, in Chile there are 18 million to 20 million, in the constitution health appears as access and not as a right and that makes a small giant change, but we are affiliated with the Inter-American Convention on Social, Cultural and Political Rights, which implies that health is a right, and we have a Public Health Institute that allows us to have good quality medicines in Chile and, as María said, there are still 35 patients in The Max’s program Foundation receiving medication through it. We thank Max for those 35 patients.
Mv: Yes, because there are also CML and Gist patients.
Felipe: Tell me about our President, what is our President called?
Mv: Sebastián Piñera
Felipe; Tell me, how do you like it?
Mv: I don’t like it.
Felipe: And our Minister of Health?
Mv: Nor did it happen to the Minister because I don’t believe anything.
Felipe: What do you think about the Isv?
Mv: That it takes a long time to approve medications, it is very slow and in other countries they already have the medication.
Felipe: In Chile there are 3 health systems, the Isabre system is equivalent to 15% of the population and Fonasa serves 70% of the population. It has 4 categories, most of the patients are in Fonasa. Are the majority of patients in Fonasa María?
Mv: Yes, in fact I convince you to tell him: I receive the medication and I do not have to pay any extra coverage.
Felipe: According to the projection in Chile, there should be 1074 patients with CML, and there is a 39% out-of-pocket cost that implies that people must pay a lot for their health.
Mv: Yes, you have to pay a lot and sometimes the exams for the medicine that is not covered by the Fonasa and Isapre systems.
Felipe: Fortunately we have several lines of care for the medicine, we have as its first line by a law the imatimib, dastaitbin and nilotinib that is delivered by the public and private system and is delivered by a Ges Auge law that insures 80 pathologies or 96, these 3 drugs are added and we need to add a high-cost drug ponatinib, bosutinib, are they in Chile, not Maria?
Mv: Yes, they are in the Isp but it costs a lot for the government to buy them.
Felipe: Because since they are not in the Ges Auge law, now it is ridiculous and I say it with a lot of responsibility, because Maria who was dasatinib who cost about 3,000,000 pesos and Polatinib like 3,500,000 pesos the difference in cost does not it is a lot and still they are not giving it to the patient.
Felipe: We have a per capita of $ 1,200 per month, the difference between the good and the bad in the GINI, even though we are better than Bolivia, but it is not an excuse for not getting more. I think we can get more things, not only the medicine but the support and all those things, isn’t it Maria?
Mv: The emotional support is very little and if they give it it is to the patient and not to the family member, because when you get sick the family also gets sick because of the worry, and the medicines that you buy or when you arrive is too late and the Patient dies or sometimes they call you for a specific thing like an exam or an operation and when the time comes the patient has already passed away.
Felipe: One of the problems that we have detected in this investigation that José Castro from Costa Rica is leading is the lack of empathy from the authorities, it is impressive, your blood runs cold about how little the person cares.
Mv: As happened to us this morning, we are asking for help and he says no, it cannot be done, but if the patient does not have the medicine they will die and no one says anything and that gives anger and grief.
Felipe: On the other hand Maria, we managed to do all the steps and received the medication at the right time, she was an important part of the medication decision and look at her now, this beautiful Maria.
Mv: My Dra went to see me and told me you are going to take the ponatimib and I said to you, I’m going to think about it, but there was the Dra who played it for them to buy it because she was scared that they would not buy it like the other patients.
Felipe: We have managed to get them to buy the medicines, now there are about 12 patients who are taking it, which is difficult for some hospitals that do not make the decision. Are there 96 doctors in total in Chile?
Mv: Yes
Felipe: There are more or less 88 in Santiago.
Mv: More hematologists and younger have arrived at my hospital in Talca.
Felipe: Further south, but more or less a hematologist sees 200,000 people in Chile. Hematologists are missing.
Mv: There are several who are already retiring.
Felipe: When we know the reality of other countries we understand how we can connect, that is our dream with the CML team.
Mv: Yes, we are going to continue fighting because there are several who need it and need medicine, there are fights for hours, at the moment we are concerned that everyone receives the medicine and does not have to be traveling because of the virus and that they have to change it the hours.
Felipe: That is the reality of Chile, we are better but it does not mean that we are well
Mv: Thanks and greetings to everyone, if someone later wants to ask me something here we are. I like to do the meetings with the patients.
Felipe: In Chile the palliative program is quite good. They have supported the family.
Mv: We like that and the patients are also happy.
Felipe: Thank you María for your time.
Patient Journey
