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!