Fahd Al-Mulla: I had my -- thank you, everyone, for inviting
me.
And I very really -- I appreciate it so much.
And everyone from the other as well [spelled phonetically].
[laughter]
This is the eye, as seen as by [unintelligible], and they were painting, they collected the
Greek -- I'll say the Greek science and all that.
Since I don't have [inaudible], I'll get on with it.
My name is Fahd Al-Mulla, and I am really a molecular pathologist at Kuwait University,
and we switched gear a little bit, that's what I am going to talk to you about.
We moved into genomic medicine as well as a finer [spelled phonetically] education.
So, in my talk, I will introduce Kuwait a little and its health service systems; Kuwait
as a public sector challenge.
And I will give you a brief history of our work and our capability, just for you to know.
And that the private sector model as well, that you should know about, and a little touch
on the Genome Arabia.
So Kuwait about 17,000 kilometers square; it's a little bit bigger than Singapore.
The population is about 3 million, and one-half million or 1 million around Kuwait [inaudible],
that were there from all over the place.
And you -- we have six governorates, and the public -- the hospital, the health system
is public and private, and the health insurers who include the private and the public is
free for everybody with minimum fee for the ex-patriot, something like $2 per see, essentially.
I would have centralized health service and centralized hospital as well, so we have the
Cancer Control Center, where they have all data on cancer from the country.
And we have Medical Genetics Center [unintelligible] genetic basis in the country.
And we have one university, which is Kuwait University, but many public universities.
And the research of this data and organized by the research administration of the university,
they do funding and set priorities and so on.
This is Kuwait University, but if you want to get some private extended funding, you
go for KFAS, Kuwait Foundation for Advancement of Sciences, which takes 1 percent of every
profit from the business and gives it to research programs and education and funding.
And most of monies are actually sponsored by this.
I love the university.
And we have also the Kuwait Institute for Scientific Research; you can also apply funding
for it.
But this is interesting, because in 2006, this was published in Nature, basically "Oil
rich, but science poor."
And this unsurprisingly was only 0.1 percent of our GDP only is given to research and development,
0.1 percent.
That's really very low.
There is a trend now, that increase [unintelligible] in Saudi Arabia, up to 5 percent, maybe more.
But Kuwait, Bahrain, UAE remains in the low standard of research.
And what you will see is an effort by new people that want to lift this beyond the 1
percent, 0.1 percent.
I made a cry in The Scientist about how difficult the system is, I mean, there is not one American
[unintelligible] university and [unintelligible] anywhere.
I mean, it's just very -- extremely challenging environment.
And you get delayed because of tenders, everything is tendered, go to buyer agents [spelled phonetically]
then things are tendered.
And when things are tendered, you don't know [unintelligible] --
[laughter]
So I said, well, I'm not going to [unintelligible], and this might be a way out of current revolution
and not listening, because science is the only way to move forward for these -- for
everybody, really.
And so we started to convince the policymakers around 2008, even more.
They gave up around 2012.
And to demonstrate the effectiveness of genomic medicine, and for the lost experience and
performance and cost effectiveness because Arabs love [unintelligible] and they really
want to know how much they save, and that's good with [unintelligible].
Okay, so --
[laughter]
So we can do that.
And so to really, you do not know how much volume you're going to save, the model -- the
financial model is unknown, but there's a nice review by James Crawford, and I tell
you to read it.
But also the benefit is not whether you found a mutation now, it's a lifelong benefit.
It's maybe you find something now or maybe you find something later.
And this is very important concept.
So it's unknown.
But when I'm talking to the policymaker and telling them, look at different generations
for 14 millions to be breast cancer clear, it would cost you millions to achieve that,
but if you let we can save you millions if you can predict them before they happen.
That was a quick response.
Not only this, but here is Ashlyn Blocker, an American patient who cannot feel the pain,
and the discoveries are priceless.
I mean, imagine the discovery you get out, the IP you get out from these discoveries
are really priceless.
[unintelligible] And we told the policymaker how important it is, we changing medicine
from descriptive to heuristic, from empirical to evidence-based and so on.
And it also showed them that we don't need prior knowledge anymore, we can do exome sequencing
and find something.
And it's as effective as Sanger sequencing, and if you do it 70x, you don't even need
to confirm that [unintelligible].
But we also showed them that our 250 patients, that the end looks at the unknown neurological
-- unknown syndrome, 25 percent were diagnosed in this study.
So we're trying to tell the policymaker we have something.
We tried to tell them also, we are looking at the disease, we can divide it into a lung
cancer, into squamous, adeno, and large cell in the past, now we're looking at specific
pathway.
And this pathology is useful drug sensitivity, but also for survival.
This is dramatic; if you want to convince any policymaker, you really show them the
effect of the [unintelligible] in melanoma, when they have -- most of them have BRAF mutation.
And here's metastases in this individual [unintelligible] and you do not -- you want to show them the
research efforts in the area [unintelligible] because the metastases come back again.
But this systematic policy can endure anyway.
We showed them that we doing the same thing in Kuwait, we can subdivide the breast cancer
in luminal, basal, into this and HER2, and we've done our own, our hip [spelled phonetically]
base classification as well.
And for the policymaker, again, to show them before we started, 80 percent of the people
-- of the women with HER2 amplification died within two years.
Since we instituted Herceptin treatment, 80 percent are living in Kuwait.
And so we pass through this discovery loop, everybody know about.
And we make sure we have you're [unintelligible] molecularly policy network assurance in Kuwait.
We only are a healthy among Europeans and Americans that have this [inaudible].
It didn't work.
From top to bottom model, this simply did not work.
I was not able -- I failed to convince the policymaker to put anyone into this.
I wanted to sequence everybody in Kuwait, and even went down to sequence 10,000 people,
it just did not work.
I was not able to convince him.
And we are slowly reaching the people themselves, reaching a few people and a few doctors actually
know about, what's the benefit of this.
And so there are also mechanism how the hospital or the Ministry of Health pays Kuwait University.
And the straw that broke the camel's back is when they told me, okay, we're doing this
only for Kuwait and not expanding it.
And I refuse to do that.
So we decided to go private, and try a bottom-up approach.
So we -- I went to the Center of -- Medical Center against most of the specialty: pediatrics,
cardiology, everything, and I inserted myself into that model as the only way.
And this is under the license of Dr. Jamal Al-Ghanim, he's a surgeon.
And we offer that as a stoke [spelled phonetically].
To make things cheaply, instead of buying 11 sequences, you buy one, but you make a
network of laboratories from around the world.
And so we made a network, over 3,000 test.
And we have together 11, about 11 American sequencing and most of us have CPA part of
the certification, and we offer what is important [inaudible].
Most people ignore them in our part of the world.
What we do is genetic disorder and counseling, personalized genomic health, predictive genomics,
and entire family.
Not much individual for the series, to do that yet.
Genetic and molecular counseling service as well.
But we work on the bioinformatics, we -- the forecast really don't play a factor until
the last thing.
So, we work with Darrol Baker, who really are looking for funders here and we need help
with that.
But this is a system that we make, as Darrol Baker make, and this looks at the board review.
So the doctors and the breast surgeon in group number 10 has a patient with breast cancer,
he would click on this page and click on the breast.
And the picture comes out, and this and the genome, only the genes associated more with
breast cancer comes out here.
If he wants to know, oh, she has a melanoma, oh, she has a dark patch there, he will click
on the scan.
And that brings out the genes involved in the subdisorders.
So this is kind of dynamic report we do.
So we wanted to make sure that the clinician and the patient, and that the report is dynamic.
So it's self-updated.
And that's the important [unintelligible] factor.
I mean, I hate a report that is 100 or 50 pages and tells you this and that, and this
and this set, and you don't have the time to do this, so that's what we want.
Also we give the patients, if they want, their whole genome or whole exome in the mobile
phone as well, because you can transfer it now.
And we can take it very high, 51,000 [inaudible].
If they don't want it, that's okay, so it's up to them.
We are open-minded.
Sometimes the codons -- well, sometimes, the codons work for protein, but in synonymous
changes, we now realize that this -- they're not -- synonymous changes also called for
transcription factor binding.
So it's important to know that the change -- although it doesn't change their mind,
it will also change the transcription factor.
What do they do to data generation?
Well, we did not want to be [unintelligible].
So we brought them down into already known databases that coincide with the syndrome
and the data for breast cancer, but others are lagging behind, but we're doing this.
And for a whole exomes and whole genomes, we're working with George Patrinos at the
Genomic Medicine Alliance, and we are trying to drop all these at once, for free, for everybody,
recruited nationally.
And we'll talk about this tomorrow.
And databases are very dangerous.
This is a recent paper we published in Nature Genetic showing that 66 percent -- this is
curated date -- 66 percent of the mutations we had to reclassify from class one, unpathogenic,
to sometimes pathogenic and vice versa.
So, databases are dangerous, we need to look at them in a very, very [unintelligible] light.
So this is Kuwait and Saudi Arabia and the Gulf states, and 50 percent to 70 of marriages
are cousins, and by the way they -- we are not completely from the human 1,000 genome
project, nothing is known.
So [inaudible] we're all funded by the Health and National [spelled phonetically] Foundation.
And it's important that this unique variants can change your -- the phenotype dramatically
compared to hormone ones [spelled phonetically].
And so also we need to sample the population very well because this, the Xs -- the green
Xs are from [unintelligible].
You can see they cluster probably near the Turkish, near the Egyptians, near the Africans,
and everywhere.
And this means our population [unintelligible] is heterogeneous.
So you cannot go to one group; you have to cover [inaudible].
And we started to do this with Dr. Lotfi Chouchane and to collect samples in 2012.
And also involvement from the Pan Asian populations among it.
Ladies and gentlemen, the genomics should be done internationally.
Now this, we have very high rate of areas of homozygocity compared to Orkney.
And here is just a case of some of the exomes from [unintelligible], and you start to get
about 139,000 variants and 13,000 abnormal, not with 154 [spelled phonetically].
And this rate drop down when you start to look at the Syrian lady and her child, which
is interesting.
So I think there is a time to do this.
You've heard this, I have visited Saudi before today, if you have been here, but they are
trying to sequence the Saudi genome, about 100,000 of them.
And this is important, so I will invite you to look at this, the Kapalins [spelled phonetically]
and the Saudis have problems with the evidence.
Saudis have something, also the [unintelligible] have something else.
[laughter]
And so -- now that was part of the genome project, again.
Really this is my message, we need to educate.
Educate is really key.
And behind this veil is a human who is really 90 percent, 99 before asking why [unintelligible].
Because [unintelligible] variation plus location, you realize is much more than 99 identical
to whatever.
So thank you very much for listening to me.
[applause]
Male Speaker: This question probably could have been asked
for some of the other speakers, but Genentech is offering tests that are based on European,
Caucasian genetic variation, so if I read out what you're telling us, you will also
be offering tests that will be unique to this region of the world, as well
Fahd Al-Mulla:Right.
So we are, --we are going to unwind these sequences we're getting to the Arubian [spelled
phonetically] gene [unintelligible].
To the 1,000 plus, some of the genomes we have bought already, from the -- at least
a thousand in all, at least 50 or fewer --
Male Speaker: But yet today, you're making clinical decisions
based on the genetic variation we know about from 1,000 Genomes.
Fahd Al-Mulla: Right.
Male Speaker: And who's paying for that?
Fahd Al-Mulla: The patient -- the patient themselves in the
private sector.
But also, oddly enough, the government as well, because while they realize we are doing
better than other university [unintelligible], and the government is now sending the samples
to be [unintelligible].
And genetic map means your genes, it's not gene type.
[laughter]
Teri Manolio: I wanted to ask you about the comments you
made about giving the exomes to patients on a mobile phone.
What -- who wants those and what do they do with them?
Fahd Al-Mulla: Right.
So I put [unintelligible] at least that they have Ph.D, and, yes, and some people who actually,
you'd be surprised.
And I got really [unintelligible], and they are so interesting, I want to look at it.
And we thought of a way to look at it, the sequence [unintelligible].
But we -- the message I want to add is we should collect these sequences somewhere and
[inaudible], it's criminal, in my opinion, genomic criminal, or criminal to that genome
initiative.
You take one information from the abnormal genome and kill the rest.
This is what's happening.
So we're collecting [unintelligible].
Male Speaker: Other questions?
If not, thank you very much.
Thanks for coming all this way.
The next presentation is from Korea, from Dr. Bok-Ghee Han.