The case of Omara Isabel Ruiz Urquiola
This interview is important in many ways. But, if I had to choose one, it would be how it illustrates the existence of Cuba’s civil society. Castroism has endured by enfeebling the individual, fomenting his social diminution and geographical dispersion. The testimony of Omara Isabel Ruiz Urquiola vividly reflects this, expressing our limitations under a totalitarian regime … but also our possibilities and strength as a civil society. It also conveys the transnational nature of this civil society thanks to the magnitude and patriotic commitment of a community of expatriates that has developed over nearly six decades of dictatorship.
Omara Urquiola Ruiz is a professor of the History of Design at the Advanced Institute of Design (ISDI) in Havana. She has had breast cancer since 2005. Since 2006 she has received a successful treatment with Trastuzumab, since 2015 combined with Pertuzumab, two drugs produced by the Swiss firm Roche.
In November of 2016 she became famous when her brother, Doctor of Biological Sciences Ariel Ruiz Urquiola, went on a hunger strike to get the first of these drugs for her after, due to the negligence of the Cuban representatives of the firm Roche and authorities at the Ministry of Public Health, Omara had been without the medication for two months.
In parallel to that protest there began a formidable international campaign to acquire the drug that keeps her alive. This included a crowdfunding effort organized by friends, which raised the necessary funds immediately. Changing her initial objective after the pressure exerted on the Public Health authorities to acquire the drug, Omara was able to ultimately use those funds to leave Cuba and undergo an important diagnostic test, which, fortunately, yielded auspicious results. This interview presents a summary of the process that began during the hunger strike undertaken by her brother and concludes with her return to Cuba.
How were you able to travel to Spain?
The springboard was the interview my brother, Ariel Ruiz Urquiola, gave to Antonio Rodiles at Estado de Sats at the end of October 2016, over the lack of Trastuzumab, a monoclonal antibody that emerged in the 90s for patients like me, and that I have to apply every 21 days.
Antonio Rodiles asked Ariel about the approximate cost of the medication that Ariel was urgently clamoring for. He told him that it was about $1,200, and gave him his contact information.
That came out, and my friends outside Cuba saw it. Then Maryori Montero, a great lifelong friend, from school and the neighborhood here, who lives in Tenerife, contacted Antonio Fernández, who is my best friend, a computer technician who lives in Miami. He organized the crowdfunding (SIC) campaign.
Is he also a friend of yours from the neighborhood?
From high school, and also a friend of Maryori’s. We’re a tight group, going back to that period. Tony, who works for Miami Dade County, told Maryori: “Let me do something, and I’ll call you back.” He hung up and put together the crowdfunding effort. Maryori saw it and told him she liked it.
That was on Thursday, November 3, the day Ariel began his hunger strike. The Estado de Sats video was a little earlier, very close to then. He was doing the strike and, at the same time, they were raising funds, with a lot of people involved.
I knew nothing because, without Internet, you’re cut off. A close friend of Ariel’s called me, a Physics graduate at the University of Havana who now lives in Switzerland, and asked me who Antonio Fernández was. And I answered, “Antonio Fernández, in Miami? He’s my best friend.” Then she said to me: “That’s good enough for me.” Then I asked her what she was talking about, and she couldn’t believe I didn’t know anything. Tony called me later, like the second day, and told me that they had raised over $1,200.
Ariel was on the strike, and Oscar Casanella and I were organizing companions to take care of him, with friends from here. They were repeatedly trying to seize him, and someone I knew would alert me. Many people gave me their support at that time.
Over the weekend, I remember on Saturday, Tony called and said, “We Cubans are the best. We are up to over 2,000, tomorrow I’m going to close it, whatever it´s at.” And he closed it on Sunday, with $3,500.
Who do you know helped?
There were a lot of anonymous people, but it was mostly our friends who were behind it. Neighborhood friends, from high school, from college, people scattered all over the world: Europe, Canada, the USA. Colleagues of mine, Art historians, who are outside the country, also donated. In Germany, colleagues of Ariel’s at the university with which he works.
And something that really touched me was that former students of mine gave. Former students from the ISDi, who are in Cuba, who have not migrated, were raising money and figuring out how to send it to the US.
That was so generous! So, it closed at $3,500 on Sunday, which made it possible … well, it wasn’t necessary to buy the drug.
No, because the Cuban government was pressured by Ariel’s strike and the publicity it generated. On Saturday they announced that the drug would be there on Monday. When the strike was over and my brother had recovered, he sat down with me because there had been a serious advance of the disease on my skin.
Does the lack of the medicine immediately trigger visible reactions?
Of course. With me, it is very fast. It is normal. I have to have it every 21 days. If not, my skin immediately evidences the disease’s progression. My brother then said that was happening outside could very well be happening inside, and I could have organs affected. My lungs, liver … he said that I needed to get a PET-CT, a test that I had received in Barcelona in 2012.
What is a PET-CT?
Position Emission Tomography – Computed Tomography, which is much more accurate than a normal tomograph.
And where did you get the PET-CT in Cuba?
No, not in Cuba. In Barcelona. In Cuba they’ve been installing the PET-CT system since 2012. I say this because that year I got my first PET-CT, in Spain, and Ariel had to go before a commission of the National Institute of Oncology and Radiobiology (INOR), presided over by Director Alfonso Luis Curbelo, then newly appointed to that office. He denied the need for such an examination, without even being an oncologist. But that’s another story.
Why did you have to go before that commission?
Because I needed a departure permit, which was mandatory at that time. One of the arguments the people used to discourage Ariel from taking me was that the equipment had already been purchased, and that in six months I would be able to receive the test in Cuba. But then 2012 went by, and 2013, 2014, and 2015, and it was not until 2016 that the first PET-CT test was performed the Oncological Centre.
Six months, in the end, were almost six years. Why didn’t you do it in Cuba this time?
Because they are running the PET-CT tests with a reagent that limits the diagnostic scope to certain kind of tumoral expression, a very small number of the 220 varieties of tumors detected on the planet.
And how do you know that?
Because my brother demanded the technical details of all the diagnostic and research devices, and did research on his own.
Do you have any idea if any other provinces in the country have installed one?
No such equipment was purchased for any other provinces. The ones they have are installed in the Hospital Hermanos Ameijeiras, the CIMEQ and the Oncological Centre.
Which means forcing patients from other provinces to come to Havana.
No. They don’t offer it to them. I know someone in Guantanamo who never had the tumor markers identified prior to surgery and chemotherapy, which is the first thing to be done to define the type of treatment.
Then, with the money raised Ariel sat down with you and told you the kind of PET-CT test you needed to rule out any progression of the disease.
Yes, patients like me around the world usually get a PET-CT twice a year. Or every three months. Carmen Acevedo, the Spanish friend with whom I stayed in Barcelona, gets one every three months, via the public health system. Due to monitoring problems, they must do so when they have an active disease, like Carmen and I do. I’m an active patient.
Do you need a PET-CT every three months?
Every three months in Spain. There are countries where it is every six months. What is outrageous is for it simply not to be done.
Once they decided that you would go to Spain to get tested, how was the money that had been raised conveyed to you?
When Ariel told me, and I explained it to Tony, he told me that the people had donated money for my health, and that I could take it to go and get tested in Spain. He sent the money here, to Cuba, for the trip, and my brother went to the Spanish Embassy for the visa. And Coco Fariñas was the one who told him to see the Embassy’s Political Attaché.
Yes. When Ariel was on strike he had called me to express his solidarity. Ariel contacted the Embassy and they said they were willing to give me the visa.
Tony sent me money and I got a passport.
CUC, which is a little more, because when you exchange it you lose dollars. It cost me 100 CUC. The visa was like 65 CUC. The flight was 1,036 CUC.
Did you also have to pay for the passport with the money Tony sent you?
Of course, I had no money at all.
What is your salary at the ISDI?
At the ISDI my salary is about 700 Cuban pesos, or 28 CUC. I was able to pay for everything thanks to the fundraising. I even went to the Spanish Embassy, where they were kind enough to propose that I have a visa valid for a full year. So, I have a visa for Spain that is good until November. That move by the Spanish Embassy was another gesture of support I received.
Was your teaching interrupted?
No. My students sent me their final papers. I graded them over Christmas and New Year’s, and then I sent in the marks.
Once in Spain, how did you do get the test?
In Spain I stayed with Carmen Acevedo. My friends were very generous. Their solidarity was amazing. I was able to get by on that money; besides the trip and expenses in Cuba, I used it to pay for the test, which cost 1,200 euros, in cash.
What about the treatment, the care?
Excellent, I always felt like a person.
Where was it?
Teknon, in Barcelona. It’s where I had done my test in 2012, so we knew it. The cost of the test had gone up 30 euros, to 1,200. And they, without me asking, ran a comparative study between the PET-CT in 2012 and this one.
So, that clinic, which had only seen you twice, retained the results of the PET-CT that you did in 2012. But at the Oncological Centre, where they’ve been treating you for 12 years they lost your medical file, Ariel told me.
Yes, and even biopsies. The comparison of the results yielded excellent news: there have been no variations between the progress found in 2012 and my current condition. That’s incredible. The oncologist who saw me told me that it was a miracle given the aggressiveness of my pathology.
You told me that TeleMartí covered it …
Of course. I sent them a thank you letter, not only to TeleMartí, but also Radio Martí, as the two outlets were extremely supportive. Karen Caballero called even before Ariel began his strike, since she saw the contacts that Ariel cited in the Estado de Sats interview. She was looking for a way to get the drug on her own. But you cannot buy this kind of drug at pharmacies. Drugs like this in the world are handled by States. For an individual it’s very difficult, because of their high cost. Health institutions have to acquire it, making large purchases.
How did this experience make you feel?
It was surprising to see something so big organized so quickly, and, despite that speed, for it to succeed. And how people from such different places could all unite for a common purpose. It’s not something you see often.
This is what our people are like.
Yes, it’s a different civil society, but a successful one. I feel very optimistic.