Those who put the body to advance science

Having an illness was synonymous with entering the cave and telling as few people as possible. All provided that this moment has pbaded as quickly as possible. However, for the journalist and screenwriter Bibiana Ricciardi, this formula did not work. She had bad cancer five years ago and on going to her chemotherapy sessions, she published on her blog and on her Facebook or WhatsApp status how the treatment was evolving. Bibiana is also a teacher, documentalist, playwright and cultural leader: she directed the signal art of the channel (á). Therefore, communicating is part of its essence.

Opportunity. He said he saw illness as an opportunity for change and that he was no longer going with his life and was writing a lot. Now he has just published the book, Put the Body, on stories related to pharmaceutical experimentation on human beings. "It's like a first-person collage with bits of life, emails, messages, that although I did not write them for publication, now I use them to tell about my illness, more reports to other people ". [19659003] More than a hundred. Bibiana, after her illness, has shed light on a somewhat unknown topic of public opinion: in Argentina, a hundred or so investigations are carried out annually on drugs before their launch on the market. As he reckons in the book, the treatments are usually expensive; so, many patients are accessing for economic reasons and without fully knowing the risks. "Someone tried drugs before I got sick and I feel like a debtor for the women who came before me and put the body so that I could be cured so easily today."

-So you clarify that this is not a book of the complaint, who could be responsible for experimenting with humans?

-The book is not a complaint book, because I would not know who to report. It seems to me that in any case the complaint is collective: let's look at what we are doing as human beings and we do not know how not to do it, because I do not think it's the fault of the people pharmaceutical companies. I started by saying that I was not very happy with this type of clinical research and that I realized that there was no other solution and that that I supported her fully. But at the same time I know it's a problem and it seems important that we see it. Is it ethical for us to experiment with a few human beings so that many of us are doing well? He is strong. And you understand why it's so invisible: no one likes to think that the aspirin you were taking needed someone to test it before consuming it.

-You say that since treatments cost thousands of dollars, a lot Sometimes people agree to be part of the experiments because they give the opportunity to do it for free. Could you say that this fills a failure of the health system?

– That's the big question. Eventually, medical health protocol ends up being a way out for people in need who can not access treatment. Then, many doctors recommend that they be part of it. This should not compensate for the shortcomings of the public health system. But he does, and they sign a risk agreement. Although ethics committees consider how much the patient is aware of this. If you ask me what would be the most controversial conclusion, the question arises: is it ethical that we do and after a few we can buy it? The most resounding case is that of hepatitis C: ten years ago, 95% of patients died and today, with medication, 95% of patients are saved. But it is so expensive that only a few can do it and many even die without knowing that they have it.

– Specifically, what is happening in Argentina?

– The legislation is not fragile here; Anmat is quite rigid and the time of approval is important. Macri talked about the subject and speed up the search process, but the truth is that it is very tricky. Compared to the United States, here we experiment with humans 1% of what is studied here.

-It draws my attention that in the book you do not talk about other issues that are very fashionable today regarding the cure of cancer, as the subject of holistic therapies, food, sports .

-Yes, he appeared in many discussions. Why today we become sicker. The scientific community is thinking more and more about the effectiveness of the environment. The whole socio-cultural situation around us, which makes every human being has his own way of getting sick and healing. We know more and more that there is no generalized treatment that works for everyone. The treatments are personal and everyone is sensitive to the treatments in a particular way. The question of the human genome is more and more often crossed by the environment than by the DNA

– What did you feel when you finished the book? Was it cathartic?

– I think you can write about reality because you know that it does not really say what hurts in the background. At the same time, write about it, it's cure. It has a cathartic process, which is also produced with the readings of others.

-To finish, without this being naive, could you say that cancer has brought you love? Because you say that some time after the diagnosis you have found your first love.

– I do it, totally. I do not know if it was the cancer that brought me love. But I consider that it takes the disease as an opportunity. I am grateful to have had cancer because it has made me see something that costs us and that we are finished and that we do not have to postpone the decisions to be happy. I could part, fall in love again. In addition, bad cancer is female and there is a reading that the tumor is so close to the heart. Many come from painful situations. For example, I had postponed the topic of living from writing because it was something I was flirting with but did not encourage me to do. And now it's been five years since I got sick and five years ago I live writing.

How to apply to participate in an essay

"We are the search engine for clinical trials for patients.Thanks to a test for me, you can know the current clinical trials and apply to participate in these investigations, find a new opportunity for your disease and for other patients, "argues the Argentinian site A Trial for Me, researcher of treatments, according to the suffering of the one who comes in. In the country, in 2012, there are had a case that sparked a lot of controversy and was the laboratory Glaxo, considered the second largest pharmaceutical company in the world, which was sentenced to pay by the Argentine justice when irregularities were detected children from the provinces of Mendoza, San Juan and Santiago del Estero, although the laboratory of British origin has been authorized to carry out clinical trials on a vaccine against pneumonia and acute otitis. 9, company and two doctors were fined one million pesos for failing to comply with the formalities of parental informed consent. ]

Phases to reach the public

Pharmacological research is divided into progressive phases of experimentation. (…) The second stage is carried out with a small number of people affected by the disease for whose treatment the drug is developed. Phase III is performed with the same parameters but with a larger number of people, potential beneficiaries of the new drug. Laboratories are tested simultaneously in different populations, with different environments, ethnicities and genotypes. Here, the motive of the people involved is more obvious: patients who do not present a satisfactory evolution of the existing drug. These people hope to be cured or improve their quality of life in exchange for a free and personalized treatment. They put themselves in danger, but their health is already deteriorated, even without submitting to the experiment

In Argentina, hundreds of clinical investigations are underway in Phase II and Phase III, sponsored by several multinational laboratories that simultaneously test the same drugs in different parts. of the planet. Today, thousands of Argentines of various pathologies voluntarily submit to these experimental treatments. They put their bodies to try new drugs, or old but with new uses. The most common method of investigation is the so-called double blind. Half of the people concerned receive the new medication; the other half receives a placebo, that is to say nothing: something disguised as a pill, or an injectable product or an inhalation spray that contains no medication. It is called double blind because neither the doctor nor the patient know what roulette reserves for them: medicine or nothing? In this way, the subjective perception of the people involved is prevented from influencing. But in the protocols where a drug that could replace a pre-existing drug is studied, it's not compared to a placebo, but with the best drug available so far.

* Fragment of the book Putting the body, by Bibiana Ricciardi.