Brenda Hurtado is from Bolivia, currently representing two groups of patients; one is Celebrating Life in Santa Cruz and the other is New Hope Foundation in Cochabamba
Brenda Hurtado, one is since I started my treatment since they are 10 years old, the birth of the group of patients in the city of Santa Cruz was almost parallel, I am in charge of the group of patients Celebrating Life and for a year I have been in charge of group of patients in the city of Cochabamba New Hope Foundation.
Felipe: How many years have you been with the disease?
Brenda: I am patient and I have been for 10 years, exactly I started taking imatinib on 02.10.2010.
Felipe: There are 2 organizations for the lmc and they are designed to serve 10,000,000 inhabitants. How many people are in Bolivia?
Brenda: Exactly how many.
Felipe: In the constitution you have the right to health in article 18, 35, 36 and I understand that this is not true.
Brenda: We have the right to life and health, as always the laws are more theory than practice, it is a problem of all governments where the health sector is always affected, there have always been plans and projects, only last year was work began for the cancer and cancer patients law, it was an initial project as prevention and it was for children, but a joint work was done with the authorities of the moment and it was possible to elaborate a more complete law that has to do with treatment and diagnosis and palliative care, but with the country’s problems due to a change of government, the law was suspended.
But on the health issue, there are no trained personnel, and if there are, the personnel do not have the necessary equipment to provide good patient care.
We have universal insurance that does not cover us.
Felipe: The international covenant on economic and social and cultural law allows us not only to defend human rights but also the rights to access things, they also give us the right to our quality of life
Felipe: What happened to the president last year?
Brenda: We are now a multi-national state. The previous government wanted to focus on the government but the laws do not allow it, it could not run again. There was a kind of social revolution, people woke up and we began to oppose each other, civic strikes were carried out in each city.
The issue of the law was more of a political issue because in 14 years they did not do what we did in 3 working groups. They took us into account to elaborate this law, but there was also a bit of an imposition to accept what they offered, but in the end it was demanded that it be broader and that it cover as much as possible the subject of cancer, including even palliative work.
There are many people who say that the law is not complete, that it should be done again, but we must wait until the issue of the pandemic passes and a new election date is set.
Felipe: Don’t they have a patient registry?
Felipe: If I make the projection that we have in lmc for the number of inhabitants you should have about 640 lmc patients. There are only 216 The Max Foundation program and I’m about 420 missing on average.
Brenda: I don’t know exactly how many we are but there are many more than 200 because the program here in the 3 most important cities such as La Paz, Cochabamba and Santa Cruz and could assure you that in each of the 3 cities there are more than 200 patients.
Felipe: About medications, do you only have imatinib and dasatinib?
Brenda: No, we have imatinib and nitlotinib through The Max Foundation, dasatinb has a separate laboratory but it has too high a cost. But by donation we only have imatinib and nilotinib which are the original ones.
Brenda: The health issue is very precarious, it is very poor and not everyone agrees to it, the medicine must be paid separately for chemo and radio.
Felipe: The cost is too little in health therefore the risk of getting sick in gigantic
Brenda: We have been asking for years for this spending to reach 10%, but it is not approved in practice, nor do we even reach 3%.
Felipe: You who are receiving the donation of medicine through The Max Foundation, for which we greatly appreciate the great help you give us, even if you have the donation but if you get pneumonia the same you are at risk as if there were no donation because there is no other kind of attention
Brenda: We patients benefit from this program, we have eternal gratitude because what The Max Foundation does for us we cannot achieve through ourselves. The medicines that we have to consume for another complication are higher costs, because the medicine has to be approved by the specialist.
Felipe: I will always say that thanks to The Max Foundation we have my dad alive, the gratitude has to be proportional to the benefit.
The fight that each country has made is impressive.
Brenda: We are the original volunteers because none of us receives money for the work that is done, but in the end if one does not do it, it could be that there are other people who do it too, even much better than you but there is nobody else doing it. , then you have to do it and in the end the benefit is more personal is a satisfaction to do it and feel useful.
Felipe: What we are doing is super important, Bolivia has to grow, you are a great example of that. I thank you very much for talking and showing this to all the leaders of Latin America, we are going to send this to CMLAD so that they have the registration and thank them for allowing us to connect with all the associations in Latin America.
Brenda: I thank you for the opportunity and I send a brotherly hug to all from this small and wonderful country and we continue in the fight.