Cancer Institute of Uganda...a Medical Hell. What can we do?

Hello to all.

for those of you receiving my Africa blog for the first time, well, you've only missed a few updates. In short, I've already crossed Kenya and am in Uganda working on a film project.

For the first time on this entire trip I actually have some quality time to sit down and write an in depth email regarding my thoughts on the travels thus far.

This morning Amanda (film producer) Ty (Crazy good Camera Man) and I left our hole in the wall hotel on the slum side streets near the coast and made our way north back into the Capital City of Kampala. This morning I witnessed a fight that was quite scary. I was leaving the bank where I had exchanged for some shillings, and right as I walked outside I saw a car pulled off the side of the road and there were maybe 15 locals beating on the car and trying to pull whoever was inside, out. There was much anger and fist throwing before the local security guards at the bank came over and joined in the fray. I was standing only about 15 feet from the entire fight, and it was pouring rain and lightning very hard. Soon, the Ugandan Militia force drove up and hopped out. these guys have tan military suits, black berets, semi automatic weapons, and hard looks to kill. They literally throw the security guards to the side, pull out the batons, and beat the tar out of several of the people around the car. They immediately fell to the ground and the militia surrounded the car to protect whoever was inside. I suddenly realized that I was very out of place, as the only white guy around, soaking wet, and watching curiously. So I backed away and took a round-about way back to the hotel (which was in an area I would not rather be in for my own safety). So that was interesting.

It was the first time I have seen anything but friendliness and kindness from the Ugandans.

We made our way back to the Mulago Cancer Institute, where we prepared for our film shoot.

I am going to take some time and explain what is really going on here. To be honest, today was one of the hardest days of my entire life, because the entirety of the situation these people are in really really hit home.

The Cancer Institute of Mulago is the only cancer center in the country, a small branch of the main hospital (which, if any of you have ever seen THE LAST KING OF SCOTLAND, it was filmed here. In fact several of the nurses were extras in that movie). It a very small institution...imagine maybe your at a baseball game. The first Cancer ward, the pediatric ward, is maybe a bit bigger than a good sized concession stand. It is like a cement prison, and there are people everywhere, mulling about. Inside the ward is just a continuous string of wire framed beds filled with sick children, and their parents.

Why are their parents there?

In Uganda, you can't just take someone to the hospital and drop them off. There are not enough nurses to provide daily care for the patients so the parents are there to see that the child gets fed. Also, most of these people have left what little they had at home (which was likely no more than a few scraps of tin) and completely re-located to the hospital. The entire family shares the one bed, even all the siblings. If the family is lucky, maybe a relative would offer to house the children. It is at least an hour walk to the city market to get food (trust me, I made the walk), all uphill the way back. Inside this ward there are maybe 20 beds. Thats all. 20 beds. This is the only cancer in the country and their are 20 beds. Did I mention that Uganda has the highest cancer rate IN THE ENTIRE WORLD? Luckily there are tons of specialized doctors to go around and care for these deathly sick children. Oh, wait. There's only one. His name is Jackson Orem, he's a soft spoken little man, and he is the ONLY cancer doctor in the entire country of Uganda. 10,000 children come through this ward a year, and Dr. Orem sees every single one of them. You can imagine, that with such a small facility, in such bad conditions, most of the children just die, so thats how 10,000 even get in. I was lucky enough to meet Amos, the next Cancer doctor, who after this next year studying in the States, will finally be able to assist Dr. Orem. Anyway, the family arrives with their sick child...

Let me go on a tangent here. Most people in Uganda are medically illiterate. They have NO CLUE what cancer is. Say that they live in the north, which is a very dangerous area. Their child is lucky enough not to have been captured by the guerilla militia, but unfortunately a tumor appears on his face the size of a baseball. Alarmed, the parents take the child to the local witch-doctor. Nothing seems to happen. (These early days are so vital) Then they take the child to a local medical center, which is literally a tin room the size of our bathroom, and smells. (On my 2 day walk across the countryside I stopped in on a few of these). Of course they can do nothing, but they do refer the child to the regional medical center. So the parents then take the child there, and that clinic is a few rooms with no running water and no electricity. So then the child is referred to the National clinic. Keep in mind, the parents still have NO CLUE what this problem is. Unfortunately, transportation to the city requires 2 months salary, roughly 15 dollars. When they get to the main hospital, after maybe a week the child is seen by a doctor. The doctor says the child has cancer and is sent to the cancer clinic up the hill. The family goes to the clinic, but since it is full, they sit outside the building. Luckily the heat doesn't go much past 95-110 degrees farenheit. After probably a month (not joking) a spot opens up in the clinic and the family re-locates from outside the building walls to inside the clinic where Dr. Orem can finally treat/visit the patient. Unfortunately, the type of viral cancer that the child has has had enough time to spread through the systems of the boy, and within a few days, he is dead. The family now has to find a way to get back to their village and continue living, all the while mourning their child. Imagine this story on a scale of tens of thousands. And Welcome to Uganda.

This story was told to me by Erica Sessele, the operations Manager of the Cancer Clinic.

The clinic has 4 or five buildings, one for children, a few for adults, and 1 outpatient care unit (which has no electricity or water).

The Ugandan Govt., after years of receiving requests, finally this January came and toured the clinic. So moved, they promised, 1 billion shillings allocated for the clinic this year.

So far.......nothing. And Dr., Orem says they will not receive anything.

How has cancer been so over-looked? There is no doubt that cancer has been over-shadowed by the HIV/AIDS crisis, of which Uganda is one of the few success stories. But it's just crazy to see how little attention this disease gets. Seriously, this is one of the most common diseases in the country, but onlyu a trained specialist can treat it.

1 in 2 Ugandans are victims of a viral cancer strain, and in slightly less than half of those have the virus evolve into cancer.

This is a treatable disease. Here in Uganda the most common strains are Kaposi Sarcoma and Burkitt's Lymphona. You dont see much of this cancer in the USA ever, because Kaposi Sarcoma is linked to HIV/AIDS. So this particular strain is quite deadly (especially combined with the rampant malnutrition) If someone has Kaposi Sarcosa, this indicates the the AIDS virus is quite advanced, but there are still treatment options, and the Burkitts disease is not related to HIV, and with 6 cycles of Chemo it can be cured. How much does that cost? 500 US dollars. Thats all. The prices are cheap. But still that is more money than most people make in a lifetime here. BTW Burkitts is a form of Mononucleosis, the kissing disease, in a more advanced stage. (I will try to stay away from technical jargon if possible, but Ive been so immersed in it the last few days it will be hard.)

For me, just walking through the ward was quite intense. For the first time, these werent just numbers, they were humans. Some raised their arm in a painful greeting to wave hello, even though I am a MUZUNGO. They know that even though I am a strange visitor, I am a friend.

However, even life inside the hospital with decent treatment is dangerous (as you know the dangers of constant rotting flesh are numerous...and yes, inside the room, thats ALL you smell...rotting flesh.)

Erica and Dr, Orem explained to me the story of a small girl named Olivia. She was a 10 year old orphan who made her way into the clinic with serious cancer, but was treated. Unfortunately, because of the limited staff, and the fact that she had no family with her, she was too weak to get food herself, and was found one day starving and near death, as thin as rails. (This is not negligence on behalf of the staff...trust me, all 5 or so of them work like crazy, non-stop) Luckily, Olivia was found and Erica was able to nurse Olivia back to health with daily cans of ensure and constant care (Erica actually bonded with Olivia in a way she doesnt like to do because of the 90-98 percent death rate of every person that comes through the door) Eventually Olivia was healthy enough to leave the compound and return to her her village where she was adopted. Unfortunately, she died soon after. But the nutrition system at the clinic is horrible as well.

Can you even begin to imagine these type of problems in a US hospital? And trust me, I have left a lot of the gory nasty details out...How can go about our daily lives and not think of the situation here? It was strange, standing there today thinking that these people were just un-lucky not to be born in a developed country and receive proper care...but it certainly wasn;t their fault. And its not like they aren't trying to improve themselves, but its hard when you have dictators like Iddi Amin murdering citizens left and right, corrupt govts, and a British influence that has left a gap between rich and poor the size of the Grand Canyon. It was just crazy today to see al that because the Ugandans are really truly the absolute nicest people I've ever met. Maybe because its the dark brown skin that makes the white teeth shine that much brighter when they smile, or the way they hold themselves even through unreal hardships....that reminds me, the eeriest thing....when I was in the ward today, the childrens ward, I heard not one cry. No a single one. I turned and asked Dr, Orem why that was and he calmly replied "these children are tough. They have had nothing given to them. They have had to work for everything. They know it is not their fault that they are here. The only crying you will hear, son, is when one of them dies."

So...yeah. I know thats a lot but its on my mind.

I will spend tomorrow visiting with the patients, getting to know them, and doing some filming. We have spent a few days without the camera just so the patients get used to us and are not scared to open up.

So Im sure Ill have more to say about that when its all said and done.

Oh, I forgot to mention, to build a new cancer clinic, 2 stories, would cost 3 million dollars. That sounds like a million dollars less than the brand spankin new church being put up down the road...and 500 bucks for one child to receive 6 cycles of comprehensive, curable chemotherapy.

In 3 days we will leave Uganda and focus on a subject that is very hard to deal with....the Rwandan Genocide and Tanzanian refugees. We are meeting with people there near Kubungo who have spent the last 10 - 15 years cleaning up the bloody mess of the 1994 genocide massacre....

Ok I suspect that is enough for now. Know I am safe...I lucked out on lodging tonight!!! Erica generously housed us in a mansion next door to the Ugandan President's house!!! (It was supposed to be occupied but the people didnt show up!! (And we would have stayed in a rat hole downtown...yeah!) Of course, nothing is the same after witnessing the atrocities today. but I am grateful for her hospitality.

Cheers,

-Ben

A 2 DAY WALK ACROSS THE UGANDAN COAST

SUN SUN SUN SUN SUN SUN

RAIN RAIN RAIN RAIN RAIN RAIN

The last 2 days have been crazy. Right now I am in a small coastal town about 5 kilometers north of Ggaba on Lake Victoria.

After visiting Mulago Hospital Cancer Center it took awhile to adjust. Although we havent done any filming there yet, that starts today, I did visit the cancer ward for children, which looks kinda like a ratty bathroom stall in a new york suburb.

Uganda has one of the highest cancer rates in the entire world...and there is only ONE practicing cancer professional
in the entire country, his name is Dr. Orem, and we met with him on Saturday.

I almost couldnt take the horrible sights inside the ward. One little boy was laying down and the entire bottom half of his body was one huge open flesh wound. And so on and so on.....So this will be rough few days.

On saturday we WALKED from center Kampala to the hospital which took several hours, and then walked ALL THE WAY to Ggaba. I dont know how far that was but I think maybe 14 kilometers or so, with our packs, in the bazilli9on degree sun......It was crazy.

And yesterday we did the same things, all day, walk walk walk walk....all around....needless to say I am not as white as I was when I left.

The Ugandan word for White Person is MUZUNGO!!!!! So everywhere I walkI hear people shouting that out.

This morning it is a pouring mess of monsoon like rain...

On the way to the bank this morning I witnessed a terrible fight involving the militia and locals...

I only have like 1 minute left to type!!

Um.....I will send a better update in the next few days.

Love you all!!!!!!!

-ben

Into Uganda

Greetings from Uganda!!!!!!!!!!!

Wow!!! All I can say is that so far this entire experience has been mind blowing. Yesterday we flew from Nairobi to Entebbe Uganda - right over Lake Victoria, the biigest lake in Africa!!

We found a taxi from Entebbe to the capital city, Kampala. On our way there (50 kilometers) it was one of the most beautiful regions I have ever seen in my life. The forest is SOO green, and we drove along the coastal lake side, which is the same as an ocean coast beause the lake is so big. The tropical biodiversity was just astounding :0

As we drove, our taxi driver o\pointed out a very nice looking estate...perhaps some of you have heard of the Dictator named AMIN (from the movie LAST KING OF SCOTLAND) he was a cruel man, but wow, his palace was quite beautiful. It was so strange to be at its footsteps.

The city of Kampala really is small, definately smaller than wichita in size, much much smaller. However, there are 6-7 MILLION people there, it is the most congested city Ihave ever been in. There are small peddlers and shops every inch of the sidewalks and millions of little buses the size of minivans and a gazillion little mini motorcycles. The motocyles are personal taxis, for a small charge you hop on the back of one he'll speed you through town.

I DO NOT LIE....there are NO, NONE, ZILCH traffic rules in the city. No lights, no signs, NOTHING!!! No street POLICE!! So imagine how the driving is with a million people crossing the streets at every part, and the cars not even slowing down....its crazy.

Last night we witnessed a lady crossing the street and a motocycle taxi mowed her down, in a busy city square (in a very poor part of the city) the driver continued on, and only a few old ladies ran out on to the streets to help move the woman, who was hurt badly. There were literally thousands of onlookers.....it must be a common thing. This was the first time I have ever witnessed a traffic accident like that.

We found a small hotel called the Le Hotel Fiancee. It was very cheap and ratty, just the way I like it :) In probably the worst part of town, as well. I find it much more of an experience to avoid all the expensive parts of town and really throw myself as much as I can into the REAL culture of the city.

To give you an idea of the exchange rate here in Uganda, 1600 Ugandan shillings equals 1 US dollar.

Prices:

Single bed hotel room: 20,000 shillings

Single Beer : 1,000 shillings

Dinner of Chicken Curry and Rice: 3,500 shillings

A cell phone (I got one for emergencies - u cant call me tho) : 39,000

A nice back pack from a street vendor: 4000 shillings.

So yeah things are quite cheap here. the taxi from entebbe to Kamapala ran us 48,000 shillings (which was too high) that has been our biggest expense.

However, as you all know, I travel on an EXTREMELY cheap budget, and other than the initial VISA (50 bucks) and that long taxi, I will try to stay under 10 US bucks a day...

For food, the best thing to do is stop at a street vendor and purchase a mango or avocado and some bread, maybe a fresh tomato. Quite cheap and you can eat them throughout the day.

Last night, Ty, Amanda, and I (for those who dont know by the way, Ty and Amanda are videographers from Seattle accompanying me on this trip, they are both very nice) went on a long walk across almost the whole city. I feel safe other than crossing the street, but still I have to always be on my guard because there are a lot of thieves and thugs here, and very little police. Not to mention the police are quite corrupt. However, my personality is give EVERYONE the benefit of the doubt and treat strangers as kindly as I can. To get the most of my experience here, I often stop and talk to strangers on the street, vendors, security guards, random passerby's, etc. Just to ask questions and become as familiar with my environment as I can. I feel like Ireally want to avoid being the "tourist" person. I want to blend in and fell at one withthe community. However, we have some serious camera gear, and hauling that around does bring attention to ourselves.

In Kenya most people spoke Swahili, that is not the case here in Uganda, the languages are various Tribal languages, all different and much harder to speak than Swahili. It's funny, all the signs and EVERYTHING in the city is written in English, but the people actually have a very hard time speaking English wqith us, its apparent they usually speak to each other in their common tongue.

As for our plans -

We are on our way to the Mulago Hospital to meet with a lady named Ericea Sessele, who I actually met while I was in Seattle. I told here my plans and she graciously invited the crew and I out to her hospital (a Cancer Clinic) to meet and film and interview and really get a good grasp on the situation here. The hospital is on the outskirts of the city. In the nex \t week we will be traveling to rural jungle areas for more footage of pediatric health problems (there will be no internet out there, and that is where we will be in the most danger)

Just so everyone knows, we are filming and following 3 main storylines

1.) Pediatric Health Crisis

2.) The refugee influx along the Rwandan Tanzania Border

3.) The development of a soda ash plant on Lake Natron, Tanzania, which is where 80 percent of the Lesser flamingos in the entire world breed, and if the plant is built, all the flamingos will disappear from there. 80 PERCENT!!!!!!

So this has been great so far.

In the next week we plan to take a one day break from filming and go to a small village called Jinja, and there we will hike to the SOURCE OF THE NILE RIVER. (Dad I wish you here for that trek.....)

I love you all and miss you all and know I am doing everything to stay safe, but, at the same time, my adventurous spirit is always looking for a crazy adventure.......thats just me though.

PS - Josh Moore - I get back in the states around June 1st so if you have already left for Morrocco - good luck man.

Good bye!!!!!

-Ben

Nairobi day 2 - Animal Orphanage

HIBARI!!! (Swahili for hi)

Well right now I am in an internet cafe in nairobi.

Today, the family that i am staying with us (The Omido's) have been very grateful.

Amanda, Ty, and I started off the day in the Nairobi Nature Orphange and I was allowed into a cage and had some great one on one time with a CHEETAH!!! They were quite nice. Dad - tell Abby that I had a baby zebra walk right up to me :) This was a refuge for orphaned animals from the wild, Lions, Monkeys, heyenas, etc.

this afternoon we went to the Birdlife Foundation and interviewed/filmed the leader of the Lake Natron Flamingo project / Soda AsH plant. That went well. Google Flamingos and Lake Natron and u will find out the story.

Tomorrow we fly to Entebbe Uganda to meet with the health clinics in the region, and from there we will trek around Lake Victoria and across the serenghetti - ending in Dar Es Salaam.

Ok i must go now,

Nairobi landing

OK!!
I landed in AFrica....I woke up on the plane and looked out the window
and we were flying clear skies over the Sahara Desert!!!

I met a family in Nairobi and they have generously played host. I
wandered all around town today...it is very very very very crowded and
the drivers are crazy.

Im going back to the airport to welcome in Ty and AManda, they were a day behind me.