Cancer Care in Uganda

Dr. Fred Okuku, Cancer Care in Uganda March 30, 2008Welcome to Yale Cancer Center Answers with Drs. Ed Chu and
Ken Miller.  I am Bruce Barber.  Dr. Chu is Deputy
Director and Chief of Medical Oncology at Yale Cancer Center, and
Dr. Miller is a Medical Oncologist specializing in pain and
palliative care. He also serves as the Director of the Connecticut
Challenge Survivorship Clinic.  If you would like to join the
discussion, you can contact the doctors directly, at canceranswers@yale.edu or
the phone number is 1-888-234-4YCC.  This evening, Dr. Miller
speaks with Dr. Fred Okuku.  Dr. Okuku is a Fellow in Oncology
and a Medical Resident at Makerere University in Uganda.Miller
Fred, I want to thank you so much for joining us tonight.Okuku
 Thank you Ken.Miller
Tell us about yourself, where did you grow up?Okuku
 I grew up in the eastern part of Uganda, which is in East
Africa.  I know many Americans have not been to Africa so it
is good to know that Uganda is a country in eastern Africa. I
currently live in Kampala, the main city of Uganda, and this is
where I have been living most of my time.Miller
Let me ask you about Kampala.  I had the pleasure of being
there last summer, but for the audience, is it the size of New
Haven, Hartford or is it a bigger city?Okuku
 Kampala is a much smaller city.  Sorry to say it has many
potholes and many people moving on the streets, but with many
smiles as well.Miller
Very well said. I found that the people were incredibly friendly
and lovely people.  When Americans think of Uganda,
unfortunately, we tend of think of Idi Amin, and the movie The
Last King of Scotland, but is your country at peace now?Okuku
 Uganda has had many challenges.  It was Idi Amin, then it was
HIV, and recently, there has been war going on in the north. 
I think many people have watched the movie War Dance which
basically depicts what has been going on, but there is relative
peace in Uganda, and you can actually access all parts of the
country without having much trouble.  You will not have any
problems in Kampala.  It is pretty much safe.  You can go
out late, and it is a good city.Miller
I found it to be that way also, very safe, and again, just
wonderful people.  Fred, let us talk a little bit more before
we start talking about cancer in Uganda. Your country has done an
amazing job with HIV.  Could you share with us what the
incidence was, what was done and what the incidence of HIV is
now?Okuku
 About 10 years ago, the incidence of HIV in Uganda was 30%, and
then there was2:56into mp3 file 
http://www.yalecancercenter.org/podcast/Answers_Mar-30-08.mp3this aggressive program by the government.  The government
was open about this HIV problem, and we got lots of help from
friends abroad. There was this strategy of ABC, which has been
commended by Uganda by all the other international communities.Miller
What does ABC mean?Okuku
 Abstinence, Being faithful, and using a Condom.Miller
Okay.Okuku
 And this is the ABC strategy.Miller
So, A is abstinence, B is to be faithful and C is to use condoms or
protection.Okuku
 Great.Miller
With that active, aggressive work that the government has done,
where are things now with HIV?Okuku
 Now we are talking about 6% to 7%, and this has been for about the
last 5 to 10 years, which is a commendable job, and the government
is trying to keep to that level and even bring it lower. There is a
lot of strategy aimed at the young people in the primary schools,
and targeting their high-risk groups. It seems to be working quite
well.Miller
With the decrease in the number of people with HIV and people dying
of complications of HIV, what is happening in terms of cancer?Okuku
 Kaposi sarcoma is the biggest killer.  It is the largest
cause of death among cancer patients in Uganda, among both men and
women.Miller
For the audience, can you tell us what Kaposi sarcoma is?Okuku
 There are many types of Kaposi sarcoma, but we are talking about
the epidemic type that is associated with HIV.  In other
words, when you have HIV, your chances of developing Kaposi sarcoma
are about 20,000 fold. That study was done here in the US. It is
associated with the herpes HHV-8 virus, which is also known as the
Kaposi sarcoma virus.  Many HIV patients, and also many
studies done in Uganda, show that the prevalence of the HHV-8 virus
is between 70% to 100%.Miller
And that is in people that have HIV.5:33into mp3 file 
http://www.yalecancercenter.org/podcast/Answers_Mar-30-08.mp3Okuku
 Exactly.Miller
So, you are saying a number of people with HIV also have this
virus, and then some of them go on to develop Kaposi sarcoma. 
What are some other common cancers; let us say in men for
example?Okuku
 In men, we have Kaposi sarcoma and then we have cancer of the
prostate and esophageal cancer.  These are the three main
cancers among the men.Miller
And in women?Okuku
 In women, the most common is cervical cancer, and somehow in
Uganda it is not associated with HIV. This is something that is
being studied. We have cancer of the breast, which is quite common,
and also Kaposi sarcoma, the epidemic type, which is quite
common.Miller
Both in men and women, there are a lot of people with Kaposi
sarcoma.Okuku
 By and large, Kaposi sarcoma and Burkitt's lymphoma form the bulk
of cancers in Uganda.  Burkitt's lymphoma was first described
in Uganda in the 1960s. Denis Burkitt was a surgeon working in East
Africa and he was the first to describe this.  It has been
about 40 years since he did that.  Every year the cancer
institute in Uganda sees about 150 to 160 children with Burkitt's
lymphoma, which is very different from what you see in the
US.  Burkitt's lymphoma is the jaw type, and even the staging
is oriented towards the jaw, so it is quite different from what you
see.Miller
I remember when I was in Kampala, one of your buildings was
primarily children with Burkitt's lymphoma with swelling of the
jaw.  That has been a tremendous success story; the work that
was done at the cancer institute.  You were not practicing 40
years ago.Okuku
 No.Miller
But what happened?Okuku
 The center that you saw was actually named in respect to the work
done by Denis Burkitt, and it is called the Lymphoma Treatment
Center, the LTC, and more than half of the children there have
Burkitt's lymphoma. I must report that we have done some remarkable
work, and 86% of the kids that come with Burkitt's lymphoma go into
remission.  In other words, the cancer totally
disappears.  We have about 1% that is still a challenge, and
we also lose many patients during follow-up, but we must say that
we still use the old combination of COM;8:35into mp3 file 
http://www.yalecancercenter.org/podcast/Answers_Mar-30-08.mp3Cytoxan, Oncovin, and methotrexate, which was developed 40 years
ago, and we are still seeing success with the same regimen.Miller
Which I have to say is amazing, that 40 years ago those three drugs
were put together and worked incredibly well, and really taught us
some lessons about using combinations.Okuku
 Yeah, exactly.  And, as you know, we are not able to do many
genomics of this tumor, we cannot type, we cannot do the cytometry,
we depend on the H and E stain that is the basic stain that was
used many years ago. This is what our pathologists still use. 
We think that the 1% tumor that does not respond probably has
different genomics, which probably requires different treatment
like Rituxan, so this is one of the challenges we are facing.Miller
Fred, talking about challenges, let us talk about adults now. If
you as the physician feel that the patient needs chemotherapy, do
you administer it, do you write a prescription?Okuku
 Our healthcare is still government based, and one of the
challenges is that the government cannot keep up with the growing
population, and so, we have patients supplementing and buying the
drugs. When I see a patient, I write a prescription, and the
patient goes to the store to buy the drug, but many of our patients
cannot afford this.  As a matter of fact, many of our patients
come in late in the advanced stages.  For example, cancer of
the breast, 95% come in the advanced stage.  Only 5% come in
stage I and II, and this is a big challenge.Miller
We have talked about how in the United States, thankfully, now it
is about 85% of our patients that come in with early stage breast
cancer.  It is a huge challenge that you face.  In your
country, if people do not have the funds to buy chemotherapy, what
happens?Okuku
 About 10 years ago we had hospice come on board, and this has been
very helpful because we cannot treat many of our patients and we're
basically palliating them. We have hospice in different parts of
the country, and they help control the pain so that people die
peacefully. Probably, where we are, is where this country was many
years ago, and it is a big challenge.Miller
I know there are tremendous efforts being made in your country to
diagnose cancers earlier.Okuku
 It is great.  Recently, we've had many people visiting, Ken,
you visited last summer, and it is really wonderful.  It is
great because this van that you are bringing over, the Mammo-Van,
is going to do a lot of help to us.  It is expensive for us to
treat cancer, patients cannot afford the treatment.  We do not
have12:17into mp3 file 
http://www.yalecancercenter.org/podcast/Answers_Mar-30-08.mp3insurance like you have here.  The best way is to catch the
cancer early, and this van would be very helpful to go down to the
villages.  Many of our people use traditional medicine, and
this is a challenge because they come to us very late. In Uganda,
as it is in other African countries, many people first take the
traditional herbs, and by the time they come to the hospital, the
cancer is advanced.  We are hoping that this van will
help us in our screening program that we are beginning.  We
will go out to the villages and to the schools and encourage people
to come screen for cancer and teach them about BSE, breast
self-exam, and encourage them to come to the cancer institute
because this is a program that is beginning, and we want to screen
as many women as possible.Miller
It would be fantastic to be able to find cancers earlier and
hopefully with a much higher success rate.  I would like to
remind you, our listeners, to please send any questions that you
have by e-mail to canceranswers@yale.edu.  We are going to
take a short break for a medical minute. Please stay tuned to learn
more about cancer care in Uganda with Dr. Fred Okuku.Miller
Welcome back to Yale Cancer Center Answers.  This is Dr. Ken
Miller, and I am here with Dr. Fred Okuku who is a resident in
internal medicine in Kampala, Uganda.  Fred, I want to ask you
a little bit about medical care in the villages of Uganda. 
You grew up in a small village.  What was the care like?Okuku
 The care has since improved.  There has been an attempt to
build health centers in every country, in every village, and this
has helped improve care.  The government has an emphasis on
primary health care and targeting tubercular diseases such as
malaria, which is the biggest killer, and TB and HIV as well. 
WHO Report 2007 for Uganda indicates that cancer deaths in the last
year were about 10,000.  Now, this could be under-reported
because only 5% of our population seeks medical care.15:40into mp3 file 
http://www.yalecancercenter.org/podcast/Answers_Mar-30-08.mp3Miller
And the other 95% do what?Okuku
 The other 95% are familiar with home remedies that people use, and
people tend to use the herbalists more.  There are many drugs
sold by herbalists in the local market, and so people tend to go
for those because they are cheap and easily accessible.Miller
What are some of the reasons why people would not access the
government's medical care, or other medical care?Okuku
 I mentioned that the government has attempted. We have four levels
of health care in the rural setting.  We have health center
one, two, three, and four.  Four is where we have an ambulance
and we have a doctor.  At the other health center levels, we
have either what we call a medical assistant or a nurse.  So,
people have difficulty.  These health centers are still very
far away from most of the population.  They aren't easily
accessible because of the infrastructure, and by and large, most of
the population earns less than a dollar a day, and so, people are
very poor.Miller
If someone needs cancer care, they are diagnosed, let us say, with
breast cancer, where do they go for that type of care?Okuku
 You cannot believe it but there is only one cancer center in the
whole country, and it is amazing because this cancer center also
serves neighboring countries like Rwanda.  Rwanda does not
have a cancer center.  Burundi does not have a cancer center,
and the whole of the eastern Congo doesn't either.  We see
patients from Burundi, from Rwanda, from eastern Congo, and from
southern Sudan.  There are a lot of patients coming from all
these regions, and if you are 300 km away from this cancer center,
you will have lots of trouble because you cannot access it easily.
A lot of people do not have the money to come over because it is
the only unit in the whole country.  Imagine somebody who
lives 500 miles away coming over to Kampala where this center is
located, it is sometimes very difficult.Miller
Fred, I want to ask you a little bit about your journey.  I
know that in an attempt to grow the opportunities for caring for
patients in your country, a number of physicians are coming to the
United States and other places as well, and it is wonderful having
you here.  What is it like to be in Connecticut, and then in
the United States?Okuku
 These are two different worlds we are talking about here. 
Uganda is very different and I had to adjust too many things; the
weather, the people, the food and the healthcare system. Many
things are very different from what we see back home.  Back
home, we use our clinical skill to make a diagnosis.  When you
look at a patient, you are looking for anemia, what we call pallor,
you are looking for19:15into mp3 file 
http://www.yalecancercenter.org/podcast/Answers_Mar-30-08.mp3jaundice, and you look at the chest, see the chest movements and
make a diagnosis.  Many times, a patient cannot afford x-ray,
so you are seeing with your hands and eyes to make a diagnosis and
start treatment.  Here, it is a different world.  In 30
minutes a patient is totally worked up, and a decision is made
based on what the results are showing.  It is very
different.  It takes two or three weeks to gets results and
start things moving back home. It is amazing, and is what we call
internal medicine, looking at the inside of the person.  What
we do at home is we look at the outside and make a diagnosis of
what the problem is inside the person.  Here, you look at the
inside and the outside and make a decision, and I think that is
very amazing.Miller
I will share with you the other perspective.  What I saw when
I went to visit Uganda was an incredible physical exam that the
doctors in Uganda do, and the careful attention to detail. We have
tremendous technology, but I think the clinical skills that you
have, and your colleagues have, is pretty amazing.Okuku
 Yeah, we do rely on that and there is a lot of emphasis on
clinical skills. I have interacted with many residents from Yale
through this Yale-Makerere University Collaboration. They come over
and they really appreciate the exchange program, and the bedside
exposure that they get.Miller
When our residents come to Uganda and spend time there, what do
they leave with in terms of new skills, and I want to ask you what
some of the skills are that you hope to bring home?Okuku
 Your residents, when they come over to Uganda, get exposed to a
huge number of patients.  Our ordinary admission in a day
would be between 50 to 70 patients. We have many patients on the
floor because the beds are not enough, and you have people who are
very sick, you have people with advanced disease, advanced
immunosuppression, HIV, you have people with huge tumors, people
with huge pleural effusions, and your residents are usually amazed.
How are we able to detect a pleural effusion, how do we detect
consolidation, and you can find those patients here in the US
because everyone goes to the doctor, but back home, it is a
different story.  You will find patients with amazing clinical
signs. Many residents from Yale have never seen an EMF case.Miller
What is EMF?Okuku
 EMF is endomyocardial fibrosis.  This is a kind of
infiltrative disease that infiltrates the heart and makes the heart
smaller.  The heart muscles are huge, and the patient becomes
so thin.  We describe it as a potato on a stick.  They
are so big up here and the feet are so small so it is like you are
supporting a whole potato on a stick.  This is unique to
Uganda because you cannot find these cases elsewhere. 23:12into mp3 file 
http://www.yalecancercenter.org/podcast/Answers_Mar-30-08.mp3Miller
Our residents leave having learned new abilities to do a physical
exam and to recognize diseases that they've never seen
before.  What are some of the skills that you hope to bring
home?Okuku
 It is amazing, the ability to look at the inside and the outside
of a person, and it is the best way to take care of a
patient.  My clinical exam might be good, but I may need to
see something inside.  One thing is to try to improve our
labs, and I know this will take a long time, but how do we
integrate this into our system where we lack good labs? We are not
able to do chest x-rays, we do not have MRIs, we cannot do CTs on
everyone.  Many times we are looking at the most important
investigation in a patient, and this is one of the things that I am
trying to learn.  Amidst everything that I have seen here,
what would be most appropriate for this particular patient, so that
they do not have to spend so much?Miller
Here, we tend to do a lot of investigations, a lot of studies, and
what I think I am hearing you say is that back home you are going
to need to focus on one or two things that you can do and use them
to the best of your ability.Okuku
 Exactly.Miller
You are faced with a big challenge when you go home. You will
eventually be one of the few oncologists in Uganda, which gives a
sense of optimism.Okuku
 I am hopeful and what I am doing is to improve my skills. 
There are lots of resources here and lots of people trying to be
helpful to my people because back home, as you know, we only have
two oncologists, and one of the oncologists is retired.  So,
effectively, we have one oncologist for 29 to 30 million people in
Uganda. It is going to be a great opportunity when I get back. My
emphasis will be on health education because this is
important.  My country cannot afford to treat people with
cancers.  It is too expensive, but we can catch the cancer
early, because, as you know, the earlier you present with your
cancer the better the outcome.  We want to have people come
early with resectable tumors, and also we hope to improve our
healthcare.  We cannot do just the basics like ER status, or
PR status of some of the breast cancer tumors, and yet tamoxifen,
Arimidex, these are wonderful drugs that can be helpful to these
patients.  We want our pathologists to also have these skills.
Currently we have been giving everyone tamoxifen, and I do not
think that is fair because of the side effects.Miller
You will be able to eventually bring some of the technology, some
of the techniques, back to Uganda. What you are talking about in
terms of earlier detection may make a world of difference.  I
know that you are involved with working on a research project while
you are visiting, can you tell us a little bit about it?26:58 into mp3 file 
http://www.yalecancercenter.org/podcast/Answers_Mar-30-08.mp3Okuku
 I am involved in looking at DCIS.Miller
What is that?Okuku
 Ductal carcinoma in situ, which is a very early cancer of the
breast. We are looking at how it changes with treatment. We look at
women who come in with DCIS, pre-chemotherapy, and then we look at
them after they have had neoadjuvant therapy and see if there is
any change. It is interesting to see how the DCIS tumor, this very
early type of cancer, changes with treatment. It is a very exciting
study.Miller
One of the projects I hope that we can work on together when you
return, is to perhaps look at the biology of breast cancer in women
from Uganda.Okuku
 We see young women, younger than 40, probably because of life
expectancy. It is about 47 for women and about 45 for men, and we
tend to see young women. It would be interesting to see whether
there is any genomics behind this and look at the biology of this
tumor. It would be very interesting to compare that with the
American population.Miller
I have one last question. What was it like seeing snow for the
first time?Okuku
 It was a different experience.  I have been battling with the
cold of course, having many jackets on me and a lot of warm
clothing.  It has been very cold indeed.Miller
Fred, I want to thank you for joining us on the program.Okuku
 Thank you.Miller
Until next week, I want to wish all of you a safe and healthy week
from the Yale Cancer Center.If you have questions, comments, or would like to subscribe
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transcripts of past broadcasts in written form.  Next week, we
will learn about the treatment of brain tumors with neurosurgeon
Dr. Joseph Piepmeier.