He Who Knows Suffers

The story of the siblings Omara and Ariel Ruiz Urquiola is a moving one. For the four and a half days the latter went on a hunger strike in front of the National Institute of Oncology and Radiobiology (INOR), he and Omara received wildly varied expressions of solidarity; an outpouring of support for which they continue to express their gratitude.

Omara Urquiola Ruiz, 43, is a professor of the History of Design at the Advanced Institute of Design (ISDI) in Havana. Since 2005 she has suffered from breast cancer, which has been successfully treated with trastuzumab and other drugs since 2006. Like most cancer treatments, trastuzumab is effective specifically for the variant of the disease that she and more than 100 patients at the INOR suffer from.
Ariel is 42 years old, a professor, and holds a doctorate in biological sciences. His early detection of deficiencies in his sister’s treatment spurred him to research, through which he has acquired in-depth information about the disease.
When on Wednesday, November 3, 2016, he was informed at the INOR pharmacy that his sister’s medication had not arrived (it had already been two months since she last took it), and they did not know when it would appear, Ariel was so indignant that he decided to go on a hunger strike against the INOR. His reaction overwhelmed his reason, his desire to live, and his highest professional aspirations, but in three days he managed to get the INOR to bring the medicine from abroad for his sister and the many other patients waiting for it.

This interview was conducted at Omara and Ariel’s home, minutes after they arrived from the INOR, where both had been treated: Omara, receiving the drug that keeps her alive, and Ariel, a serum to rehydrate, because he had only then stopped his protest.

Boris González Arenas: What does your sister’s medical treatment consist of?

Ariel Ruiz Urquiola: After eleven years of treatment, my sister receives a combined immunological therapy based on the joint administration of trastuzumab and pertuzumab, but before that (pertuzumab entered the combination therapy in 2015, as it is a newer drug) she received a combination of trastuzumab and many other drugs. These are medications by Roche, a high-level Swiss firm.

BGA: To what do you attribute the difficulties she encountered in her treatment?

ARU: Simply the incompetence of the authorities in the Cuban public health system. Of course, that incompetence leads to medical negligence, and that medical negligence verges on a loss of humanity. Because if you have ten patients, and you plan from one year to the next, how can you explain not having the medicines you need the following year? It doesn’t make any sense. She will take 16, 17 bottles of the drug per year, like every patient. This should not happen in Cuba, which boasts about its comprehensive public health system.

BGA: Since 2006, what has been the longest period of time that she has gone without trastuzumab?

ARU: Other times it was two or three months. But my form of struggle then was different: complaints to the pharmacy management, letters to the director, waiting, looking abroad …

BGA: And why did you take a different approach this time?

ARU: For two reasons. I found out that the Cuban subsidiary of Roche, the company that provides the medicine to Cuba and the world, it being a drug from its laboratories, had been delinquent. It sold a batch of 75 bottles whose expiration date was close to one week away.

BGA: That is, the Cuban branch of Roche sold it to the Cuban authorities, and when they received it and saw the expiration date, they sent it back?

ARU: No. MediCuba, the Cuban company that imports medicines, didn’t send it back. They bought it. On top of this, it was an incomplete batch. When it arrived at the INOR pharmacy, the administration of the pharmacy said »No, I cannot keep this purchase,« considering the expiration date, and returned it to MediCuba for them to return it to Roche.

BGA: This is where your sister’s treatment broke down?

ARU: No, the breakdown came even before this, as her treatment was already a month late, but this was going to delay it for another month.

BGA: What do you mean when you say the batch of 75 bottles was incomplete? How many should it have had?

ARU: It was incomplete because there are more than 100 breast-cancer patients slated to take trastuzumab in the oncological wing. It was something like 120, 130 … The other thing that made me so determined was the response I got: »We don’t have the medicine and we don’t know when it will arrive.« This lack of precision about when the drug would arrive, and the information about the batch purchased, about to expire, sparked my protest.

»He who is ignorant is happy. Ignorance is bliss. He doesn’t see the danger, the inhumanity of it. He cannot compare because he has no basis to do so. You know? He is happy. But he who knows suffers.«Ariel Ruiz Urquiola

BGA: When did they tell you that they didn’t know when it would arrive?

ARU: On Wednesday of last week. And that »we don’t know when it will arrive« is the same response that they may have given in past years. After two months, three months, it would arrive. The State Security officer who dealt with actually asked him, »Why’s he protesting if the drug will be here in two months?« That was on the second day of my hunger and thirst strike.

BGA: Was there a paramilitary siege during the strike days?

ARU: I was arrested three times.

BGA: And how did you find out that the drug arrived was about to expire and incomplete?

ARU: I would prefer not to disclose that.

BGA: Someone you know gave you that information?

ARU: Yes. I have been involved for years with many people, and they take an interest, because we are talking about a matter of life or death.

BGA: Do the kinds of irregularities that occurred with your sister happen to other cancer patients, too?

ARU: I cannot be certain. The irregularities are widespread, but I do not like to talk about cases about which I have no proof. I can speak about infiltrating ductal carcinomas, because I know about them. And that’s why I’m going to turn to the World Health Organization (WHO) to request an inquiry into the INOR, examining treatments and the mortality rates of registered patients diagnosed with invasive ductal carcinoma since 2005. I want to collaborate with WHO researchers to corroborate information with family members, especially based on the facts of my sister´s case.

BGA: Do you have much confidence in the people involved in the system?

ARU: In general I do not have faith in the ability or responsibility of any of the public health system directors with whom I have spoken. For example, my sister’s medical file, No. 322597, has been lost since June of last year, when I filed the request for pertuzumab.
It had been lost twice before, and in June it vanished. Thus, a new history was started on a patient who has been receiving treatment for eleven years. I was able to provide them with a medical summary that is detailed and of the highest quality, as the doctor himself has acknowledged.
And, of course, it is not the fault of the attending physician, Dr. Braulio Mestre, who in my opinion is highly capable.
I do not know what they are going to do; if they are going to draw it up or whatever. I have it photocopied. That is, they’re not going to take me for a ride.

BGA: Do you feel all right?

ARU: Excellent. The only problem I have is a certain heaviness in my left leg. I don’t feel mentally tired. The human body is amazing. I went almost five days without eating or drinking, and the physical effects were nothing compared to the spiritual pain inflicted.

(After nearly a minute of silence, Ariel interrupts his long rumination).

You understand I just came to find all of this abhorrent, right? That this situation, in my particular case, was a trigger. After the events on Wednesday I just said, »I can’t take it anymore.« Understand? I couldn’t take it anymore. Because when I came to this house, to this room that I share with Omara, she asks me. She cannot demand anything of me, but she asks me, and for me, I feel it like a demand. Because I’m the person who has the knowledge, who knows everything about her case. He who is ignorant is happy. Ignorance is bliss. He doesn’t see the danger, the inhumanity of it. He cannot compare because he has no basis to do so. You know? He is happy. But he who knows suffers.

The interview was first published on Diario de Cuba