Silvia de Armas represents the Association of Patients with Chronic Myeloid Leukemia – ASOPALEU in Guatemala, she is co-founder since 2004 and its current president is Karem Armas de González.
Summary of the Interview with Silvia
Representation of ASOPALEU chronic myeloid leukemia patients since 2004 and co-founder with the position of vice president and the president is Karen Armas de González.
The board is renewed every 2 years
It is made up of the founders and people who join the work of the ad honoren association.
We support the patient and family members.
Most of the patients contact us to include them in the lmc and gist patient registry database, the association has its pillar in patient education so that they can learn more about their diagnosis and how to take it, we insist very much on adherence of the medicine, we have the informatics part and we are the link between patients and doctors and hospitals to guide them in the acquisition and orientation processes.
As patients we are an example of help and hope and hope that the treatment will do them good, it gives them peace of mind.
The association turned 15 last year and when we started we were very few and the internet was not so accessible and the information was very little.
At this time what was available was interferon and hydrea as a treatment.
We had the accompaniment of a hemato-oncologist who took the task every 15 days to make meetings with very few patients.
Not all patients are recipients of information and not all patients do not want to know anything. The patient who is alone suffers more from the side effects.
Felipe: how have you managed to reach the patients?
Silvia: We have approached patients when they are in need, rather we look for them, people are all different some more than others, some are more grateful and you are working with a thank you to God. We learned to respect everything because in the beginning the meetings were achieved, many times paid with our resources, and the people did not come, we had the specialist working ad honoren, but we learned a lot.
The person who does not want to know about his diagnosis in the long run will suffer more because at the end he will be alone in his world because he thinks that what is happening to him only happens to him and perhaps they are situations that many of you They are living and contributing something in their life.
Technology now calls a lot because now everything is on the internet.
For people who do not want to be directly with the group of patients, we try to share the links so that they can consult them, because we know that the information on all Dr. Cortez colloquia is trustworthy.
Felipe: for all those who do not know Dr. Cortes, one of the developers was the first imatinib, the first treatment, and he was part of the team of researchers and we are lucky that every year through The Max Foundation a colloquium was given to all Latin American organizations and patients.
Silvia: Yes, Dr. Cortes is one of the recognized doctors worldwide and is one of the experts in lmc, he is a Mexican doctor.
Felipe: Nor can we forget Dr. Jiménez who has contributed so well with all organizations.
Silvia: we have to diversify our services, we have a group of young patients and there are few young people who do not participate, there are other countries where young people have a hard time participating, here young people have been joining the group.
I what I have as a parameter the patients who do not want to be in face-to-face activities we share all the information
We always provide the service whether or not the pathology because we have also been a link with other organizations, because patients who come with other pathologies such as breast cancer, cervical cancer come and we try to make the link or support them with the different hospitals where these pathologies are attended.
Felipe: As we already have some recognition in our countries, people are approaching and it is impressive how people with different pathologies tell you: you helped my cousin, and we have to refer you to different organizations.
Silvia: yes, it has happened to us that there are evicted patients, there is an organization that is in charge of treating these people and they guide them very peacefully and it is a very timely and professional support.
Felipe: In all the countries of America there should be this process of good dying.
Felipe: let’s talk about your beautiful country
Silvia: the 2019 census showed 17,259,000 inhabitants
Felipe: is health in the constitution?
Silvia: health is in the constitution but we do not have a cancer law, it is still being read for the uterine cervix and breast which has not yet been decreed. Our system is mixed.
76% of people are treated in public health hospitals, 18% social security and 6% are in private centers.
Felipe: by population distribution you should have between 900 and 1000 patients with CML.
Silvia: no, sure international statistics yes, but we did not reach that figure, it is much less, but in the case of public health the patients are less than 300 patients. I imagine that part of this is because CML does not manifest itself many times until it is very advanced and many of the patients found out about it due to other circumstances.
Felipe: how many regions does your country have?
Silvia: it has 4 regions, western, south north west and eastern.
Felipe: does your president last 4 years?
Silvia; Yes, 4 years.
Felipe: and can it be renewed?
Silvia: yes, it can be renewed.
Felipe: does the congress have senators and deputies?
Silvia: yes, the laws come out of Congress.
Felipe: knowing the great support that The Max Foundation makes, our mother association, without her none of our organizations were alive and we know that in Guatemala 297 patients are treated with the aid program. Do you know someone who benefits?
Silvia: yes, I am part of the beneficiaries and I know 90% of the people who benefit from the project.
Felipe: How many hematologists are there per person, are they few or sufficient, how many are there in your country?
Silvia: The last chance was like 29 hematologists and most are concentrated in the city.
Felipe: It is very little for the existing population.
Silvia: the patient if or if he should come to the city and many times the patient abandons the treatment, the issue of the passages, the accompaniment by a relative is very expensive and that complicates them even though the hospitals have a shelter.
It is one of the most expensive countries in the region.
We have managed to support the patient with the exoneration of tickets from distant regions.
Not having to move to the city, the patient abandons the treatment.
Transparencies in organizations are very important because when people realize that what they contribute reaches people, people are more committed to donations.
Interview conducted by Felipe Tapia on April 17, 2020
Patient Journey
