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Saturday, November 12, 2016

Ariel Ruiz Urquiola, who went on a hunger strike to protest the lack of medicine for his sister, talks about the irregularities affecting cancer patients

Ariel Ruiz Urquiola, who went on a hunger strike to protest the lack of
medicine for his sister, talks about the irregularities affecting cancer
patients
BORIS GONZÁLEZ ARENAS | La Habana | 12 de Noviembre de 2016 - 09:47 CET.

The story of the siblings Omara and Ariel Ruiz Urquiola is a moving one.
For the 4 ½ days the latter went on a hunger strike in front of the
National Institute of Oncology and Radiobiology (INOR), without eating
or drinking, he and Omara received the most diverse 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, among 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.

Ariel is 42 years old, a professor, and holds a Doctorate in the
Biological Sciences. His early detection of deficiencies in his sister's
treatment spurred him to undertake research through which he has
acquired in-depth information about the disease.

When on Wednesday, 3 November, 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,
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 them to bring the medicine from abroad for his sister, and for the
many patients who were also waiting for it.

This interview was conducted last Monday 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 abandoned his protest.

What does your sister's medical treatment consist of?

After 11 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.

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

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 10 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 a year, like
every patient. This should not happen in Cuba, which boasts of having a
comprehensive public health system.

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

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

And why did you take a different approach this time?

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 had sold a batch of
75 bottles whose expiry date was close to one week away.

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?

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.

This is where your sister's treatment broke down?

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

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

It was incomplete because there are over 100 breast cancer patients
slated to take trastuzumab in the Oncological Wing. 120, 130, something
like that ... 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.

When did they tell you that they didn´t know when it would arrive?

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 Oscar Casanella 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.

Was there a paramilitary siege during the strike days?

I was arrested three times.

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

I would prefer not to disclose that.

Someone you know gave you that information?

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.

The kinds of irregularities that occurred with your sister ... do they
happen to other cancer patients?

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) in order 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.

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

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.

Before it had been lost twice, and in June it vanished. Thus, a new
history was started on a patient who has been receiving treatment for 11
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 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.

Do you feel all right?

Excellent. The only problem I have is a certain heaviness in my left
leg. I do not 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.

Source: Ariel Ruiz Urquiola, who went on a hunger strike to protest the
lack of medicine for his sister, talks about the irregularities
affecting cancer patients | Diario de Cuba -
http://www.diariodecuba.com/cuba/1478940472_26673.html
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