Translator: Perola Tavares
Reviewer: Nicolas Grossi Well, I'm so happy to be here. I'm here because I have
an objective, a mission. But I'll reveal it
at the end of this talk. You know that when we, doctors, diagnose a chronic illness
that is here to stay, the patient mourns. And as in every mourning,
as described in medical and non-medical literature,
mourning has stages. The first stage is denial. If we prognose, they say
"Doc, it's no big deal." "There's no problem if there's no pain." The individual goes ahead
with his normal life. We can lose a lot of time
and money, for example, going "doctor shopping." We visit one, then another,
to see which one suits us best, or says what we want to hear. Thus, we start with denial. This can be a strain,
it's a hard time to overcome. And later, when we can't go ahead
with this denial, the other stages emerge. But first, I'll tell you what happened
to a friend of mine. She's a doctor
and had a problem in her leg. Her leg would hurt and got numb,
it was like this for months. And notice to what extent
her denial stage went. She thought that as we grow older and are reaching our 40s,
we start to get smaller and, besides getting smaller, our nose and ears grew
like some type of monster. So she thought that the pain in her foot was because one was getting
larger than the other. That, in fact, what was hurting
was her shoe that was too small. My friend was ridiculous! But that's what she thought. Finally, she was diagnosed
with a neurological disease. And so it was. After denial comes anger. It's OK, I can't deny anymore
but I'm angry. I'm angry with God, the universe,
my family, my doctor. Here, the treatment is hard. But we need to help to overcome it. And after anger is gone,
comes bargaining. It's OK, I'm still angry
but I'll try to get over it the best I can. So we start to bargain with God, when we have a serious disease
and say: "Please, God, let me live until my children grow up" or "God, I promise that
if I get cured, I'll walk to wherever you want,
on my knees, as you want." And we also bargain with our doctor. Sometimes, patients come to bargain. Juan is a patient of mine
diagnosed with diabetes. And I had to tell him
he should use insulin. I told him: "Juan, you need insulin." "No way, Doc! I'm out." He slammed my office door,
but returned 15 days later and told me: "It's OK, doctor,
I'll use insulin, but I'm here to bargain with you." Well, what does he want? "Doc, I'll take insulin,
if you let me eat pork every 15 days" Great, it's a deal. He's doing fine with the insulin
and eats pork once a month. And after the first shock,
comes anguish, sadness, because we understand that,
whatever happens, the illness is still there. And here, the only thing the family
and doctors can do is to support the patient
so that he can finally reach the last stage
that is acceptance. The stage in which we adapt
to what we were given. Some diseases are easier
to face than others, some only needs taking medication
or changing habits. Others are harder, such as learning
how to live with a pain. And others are even harder,
such as being impaired. Up to here, we've seen
what's in the books. What I'm here to propose today
is a sixth stage. The stage of opportunity. A stage in which we take the negative
we are coping with and turn it, however small,
into something positive. The stage of action in which
we generate opportunity, for us and for others. Maybe, It sounds hard and weird. I'm here today to tell you about
only one of the ways to create an opportunity, just one. There are hundreds, thousands. As you can see, I'm a doctor
but I'm a medical researcher. What does it mean? It means that I work on studies
of pharmacological research, in which new medicines
are developed. I work to find out
if these new medicines can be released to the market
and treat some new or old illness. You know, before a medicine
becomes a drug, one molecule gets in a lab and until it arrives at the pharmacy, it's been over 10 years. But before I move on,
I want to ask you something. I want to know, raise your hand, how many of you
have ever taken medication? Let's see. Raise your hands!
For pharyngitis, for a headache. Let's see. I see you all. There, Sir, the blue pill
is also medication. So come on! Including the blue pill man, all of you have taken medication. Have you ever asked yourself
how did it get to your mouth? How does the doctor know
the dose I need, or what side effects I may have? Through clinic trials. Through research studies. And the one I told you,
that has been over 10 years, throughout these 10 years,
many volunteer patients come by. And thousands of people also work
to bring it to the pharmacy. This first part of the molecule
appears at the lab. But then it has to be tested,
first on animals. Rats, mice, Guinea pigs that are in this first phase,
that's called phase zero. And it can take years in this phase
zero, trying to find out the toxicity and the doses needed. And then, phase one appears. Now we already know it's safe,
but we want to know if it's safe for humans. So, what we do is --
there are volunteers, non-patients volunteers, healthy people, who participate in these clinical trials to examine the first contact
between human and drug. It can take one, two, three years. It happens in highly developed countries in intensive care units,
where we have minute by minute a very strict control of the patient. And then, phase two
and three appear. Here, hundreds of patients in
phase two and three try this new medication
with the one that is already being sold, with the best possible
medication available. What do we want to know?
Which one is the best. And if the new one may help
to treat an illness. So, all these patients
who engage voluntarily -- We must check a lot of data. There is a big data base being
done in one part of the world where independent people
and strict statistics methods -- What they do is to check
if the medications work and if they are safe and effective. It's done in different countries
at the same time, with the same protocols,
and quality standards. And the researchers
and research institutes have to abide by the national
and international laws. And we also need to have
nearby ethics committees to protect the rights and security of the patients that participate
in the clinical trials. Once it's over, through statistics we send this information
to the most important entities in the world. They decide whether
this medicine works and if it's safe and efficient
so that when you have that problem again you use this new medicine. In the clinical trials,
there is very strict criteria for inclusion and exclusion. Why? What we do in this inclusion criteria is to see that the patients
all over the world are included in the same way. There are many exclusion criteria to take care of
these patients' health. And many times,
patients want to participate, many patients want to volunteer. This is what happened to me once. Pedro had gone through
an investigation research. And he was really, really proud. He said: "Doc, I want to participate
in other study" Great! Let's see the inclusion
and exclusion criterion. He's completed them all but one, and the result should be 8 or more. What does it mean? That his illness is out of control and that his entrance to
the research is justified. If he gets less than 8,
he's well and won't enter. He's taken blood, then he tells me: "Am I in?" I have bad and good news. Bad: he didn't enter. Good: he got 7.9. "Look, Doc, I need to enter, I need to take part.
I want to do it. Doc, I need an 8. How can we do it?" That's what he told me, really. No, we can't do it, we are very strict. And thanks to this strictness,
you can take all these medicines you have taken all your life, safely. Many patients like Pedro
want to participate. That's what
investigation trials are about. Thousands of volunteers. This is one way of creating
an opportunity. Participating in a clinical trial
doesn't assure us that the medicine will cure us
or make us feel better. It is only a hope, and an opportunity, If it works, thousands of patients will have a new medication for the same illness. As a research, I have invited
hundreds of patients to participate, for years. But there was always the same question. When I told patients
about the possible benefits, but also the possible risks,
they asked me: "Doc, if you had my very same illness would you participate
in this clinical trial?" "Doc, if your dad were here,
would you invite him to participate of this trial?" My answer was always "yes",
absolutely, because I believe in what I do, I believe that without it,
science won't go ahead. I'm certain about it. So my answer was always "yes". Until one day, something happened to me. That day I was the patient. That day I sat the other side
of the desk asking the same questions,
my patients asked me. I got sick from some strange illness. We, doctors are awful when getting sick. If we get the flu,
we finally have pneumonia. Or we get some strange illness
like I did, I'm no exception to the rule. For you to realize
how strange my illness is, I will explain you
how illnesses are classified. Strange, stranger and mine. It's so rare that
it doesn't have a name. And well, as every patient, I mourned. From absolute denial, because what happened to me
at that moment was: "Thanks for the diagnosis , Doc,
but I don't have time to get sick. I'm a very busy woman I have many beautiful children
to take care of, I work with many people, that need me. I don't have time to get sick. Besides, I have to go to the gym" Obviously, nobody paid attention to me. Not even my illness that told me:
"Relax, dude, I'm here to stay,
so make yourself comfortable" I'm going to confess something,
but don't say it. The ridiculous woman who thought
her foot hurt because her shoe didn't fit was me. Yes, me. So many years studying, for what? To think that nonsense
and lose months of diagnosis. But denial can get
to unthinkable extents. And then, the mourning. Yes, like every patient, anger, sadness, anguish, fear, fear to the unknown, fear to what could happen
to me with such strange illness. And finally, acceptance, and adaptation. Then I discover that books missed one last stage, opportunity. The stage to turn something
into positive, that couldn't be for nothing. I needed an action stage,
I needed to go beyond, as I have done with everything
in my life. Then I said, well, I'm reaching
sixth stage, I have to do something. So, what did I obviously do?
Search a clinical trial. I searched an investigation study, in some place of the world
where I could fit inclusion and exclusion criterion. So I searched, and searched,
and searched. But there aren't clinical trials
for my illness. But, not only
there aren't clinical trials, there is no treatment for my illness. One day I went to the doctor,
and he told me: "The truth is we don't have treatment,
but we will try this medication for an illness
that is similar to yours." OK, let's try it! And I'm here thanks
to that medicine, but also to the thousands of
volunteer patients that participated in this clinical trial,
where they checked the medicine, thanks to
thousands of anonymous patients I will never know,
and I will never thank, that I'm here telling you
my experience. That's why participating
in a clinical trial is one way to create
an opportunity, only one. Participating is something
really small we can do to do something bigger. Because life can give us
an incredible, wonderful opportunity to help. And no matter how small,
this can have a multiplier effect you can't imagine how big. If only one of you today, only one can, in that moment of adversity
in which you or someone near you is ill you can, for a second,
remember this talk, I met my goal. Thank's a lot!
