Viviana Olivares has been the Patient Coordinator since 2009 at ALMA – Argentine Myeloid Leukemia Association. They guide patients with chronic and acute pathologies as well as patients with purpura.
Vivi: I have been working at ALMA (Argentine Myeloid Leukemia Association) since 2009 as patient coordinator, I am a family member of a patient, Fernando is a patient since 2002 and we work as coordinators, we have 2 psycho oncologists to accompany patients and we support patients with purpura and all kinds of leukemia. There are shelters, in Bahía Blanca there is a shelter that cares for patients while they are doing chemo.
Felipe: You are the only ones who support patients with access and treatments.
Vivi: Since 2010 we have been carrying out the Contaging Life program that we are visiting different provinces so that patients and doctors can get to know us, and we provide the same meeting we held in Buenos Aires on education and their rights, teaching them how to take care of themselves and how to claim for their rights. and treatments.
Felipe: Why is ALMA called ALMA?
Vivi: When the first group of patients formed by The Max Foundation was made, they looked for a name that represents them and they chose ALMA because they fight for their treatments and diseases and their initials are Asociación Leukemia Mieloide Argentina.
Felipe: And you are 42,000,000 inhabitants?
Vivi: We are 43,000,000 dispersed in 23 provinces.
Felipe: Does each province have a governor?
Felipe: Does each province have a governor?
Felipe: Is the health system in the constitution as a right?
Vivi: Yes, full coverage is in the constitution, in article 42, which is a right to health.
Fe: And you are 55% public and 45% paid. How is the prepaid system?
Vivi: We have 3 large groups, Social Works that is propagated, the Public System and the Retirement System. The retirement system is 9%, the public is 35% and the social works system is 35%.
Felipe: Do you have companies that provide you with health insurance?
Vi: They are private companies that people pay to have better coverage and quality.
Felipe: Does everyone have a flat and with prepayment can you have a better benefit?
Vivi: Yes, there is a social work system and according to the salary you earn you can pay a difference, then there are those who work independently who pay and access that private health system. The union social works are those that have the workers who are under a dependent relationship who are hired and every month they withdraw 3% of the salary that goes to a social system.
Felipe: Do you have a President that lasts 4 years? Can you be reelected?
Vivi: Yes, it is democratically elected that lasts 4 years and can be reelected for 4 more years.
Felipe: How much is your out-of-pocket spending on health?
Vivi: Independently it is 0.4%.
Felipe: So you don’t spend a lot on medicines?
Vivi: Not because it is covered by the health system.
Felipe: What about transplants?
Vivi: transplants are also covered in both the private and public areas, those with social work have it covered but those who do not have social work take longer because of permits and authorizations and assignments but have it covered, pre-transplant and post-transplant.
Felipe: It is impressive, they have all the lines of treatment, also do they have asciminib?
Vivi: Yes, we have all the lines, the last one is in the research protocol, there are patients who are entering this protocol and have everything covered, transfer, shelter, there are the 3 lines of inhibitors, imatinib, dasatinib, ponatinib and bosutinib, this The latter is entering Argentina as a compassionate use.
Felipe: Is the public system not delivering it?
Vivi: There are many patients with treatments, because of bosutinib we have few patient registries, we are just starting to work because many were waiting for this authorization.
Felipe: You have many copies. Conetec, which is a drug surveillance and control system.
Vivi: Conetec is an institution that was recently made to control all this, there are 3 NGO’s that have been able to help patients but for the control of copies we have the ANMAT (National Administration of Medicines, Food and Medical technology ), the issue that Anmat authorizes all medications, but if a patient does not report that the medication falls ill or has no response, they cannot control it.
Felipe: If a doctor says it doesn’t work, take action on the matter?
Vivi: Yes, they take the complaint a report of drug surveillance, with patient data and expiration lot number and when it is delivered they do all the follow-up and the more patients they report the better because they get to the control. This process is a little cumbersome. In a meeting that organizations from Latin America invited us we could have the talk of the director of Anmat and Fernando asked him how we should do to report the events the loss of patient response, he informed us that there is a report that should be done but many do not denounce. From this a meeting with Anmat was arranged and as a result ALMA is the peripheral effector of Anmat. We are inviting doctors and offering them this ALMA service because it is a waste of time for doctors. This report can be done by the endorsed NGOs, the treating doctor or the patient. The doctor knows that the report can be done, the patient does not know what can be done or has no idea how to do it.
Felipe: All of our patients do not have much knowledge and they are totally ignorant about this and that is why several Latin American leaders are trying to promote this from the University of the Patient, that the patient is preventive rather than the passive, there is a need for Important patient organizations to contain and prevent and guide patients in their process.
Vivi: Above all, to help and educate the patient regarding his illness, to know about the treatments that exist, up to where they can claim and make use of their rights. This year we were just beginning to mold and now with this pandemic this affected everything as a stand by.
Felipe: Yes, I believe that in all countries the blow of cancer patients will be strong in this period with the pandemic and the organizations will have many defenses that we will have to do, I believe that the blow will to be very strong.
Felipe: Are they a happy people?
Vivi: Yes, we are a happy people.
Felipe: Because your Gini is not as terrible as other countries.
Vivi: Even the class difference is abysmal, over time the middle part has been lost.
Felipe: When a patient has CML, is it detected quickly or is it detected very late in the country?
Vivi: A patient with CML is detected when they have a worrying examination and there he discovers that he has CML and some are detected late, because the patient says that afterwards I go to the doctor and when he goes to the consultation they say yes, for a year I have been felt bad. It all depends on the organism of each one.
Felipe: How do patients get to you?
Vivi: It is important that the patient has a person to accompany him or her, that the other people also have an emotional charge and the patient often arrives stunned, worried, that is why then we tell him to talk to Fernando and Cristina who have been in treatment for many years. , that what is important are the controls and medication, that you access it, that you follow the treatment instructions to the letter.
Felipe: This way you lose the feeling that I am going to die and the feeling that I am going to live many years with this disease begins.
Vivi: When they arrive at ALMA the patient is totally different from when they arrived, the burden is less, they also feel that there is someone accompanying them, we offer psycho-oncologist help. There are patients who are hospitalized they are called and they have gone to clinics that have been hospitalized. Now because of the pandemic we are thinking of making a virtual meeting. In November the year ends.
Felipe: Congratulations for the country you have, it is good that you are fighting for the last line of treatment and not for all lines of treatment, it is good that The Max Foundation is helping 40 patients because that implies that many more patients achieve access to medicine and that’s good. The work of The Max Foundation is tremendously important, it is nice to see how organizations that work together with governments are evolving. Imagine that all of you (us) are working and that we have all this in our countries, it will be something totally different and that could change the health issue in the world. We are 10 years from Europe but we have the capacity to make this leap and be on par with Europe.
Vivi: Yes, not to lower your arms and fight for access to treatment for patients. In 2018 when we had problems accessing ponatinib that is not covered by the drug bank, we managed to have meetings with this agency and we worked with other NGOs and with them we have managed to keep in touch.
Felipe: It is good that we have these conversations. I’m going to do it in Costa Rica, but now we’re doing it online.