When having HIV is a blessing
A shocking thing to say, believe me, I know. Attention given to Africa in regards to AIDS relief has been clearly helping - I am told by people who should know...particularly so in Uganda. My colleague tells me that when she first left Uganda in 2004, HIV was a death sentence, but today most people are getting the needed drugs...thanks in large part to the Unites States' PEPFAR and the EU's Global Fund. As a side note, I was told today (again by those who should know) that the US was well discerning in distributing their funds for use to organizations based within the US, while the EU was a bit overly trusting in giving their funds to the Uganda Ministry of Health where a significant (I would suggest every penny is significant) portion was squandered by corruption. Yeah, so toot our horn...but not too loudly.
So I have spent some time up at the Uganda Cancer Institute (short article HERE that discusses some the particular diseases - like KS - that we are working on). Having already spent some time at Mulago Hospital I knew a little of what I was to expect, but of course I was again overwhelmed.
In one bed is a child with Burkitt's Lymphoma (a horrible cancer associated with EBV and first described at this very Institute that often causes horrific disfigurement of the face). In the bed next to him is another child with the same ailment. One will die and the other will live. The difference between the two? Nothing except one happens to also have AIDS and thus will have access to funds to pay for his needed chemo drugs. The other child being unlucky enough - as it were - to have developed Burkitt's without AIDS, and thus will die. For the latter there are no funds from the US or the EU to help him and he will die.
Seeing kids - or anyone for that matter - with Burkitt's is not easy. I'll be honest: I just wanted to leave...it was too much for me to comprehend...too much for me to deal with. I maintained my composure though, smiling and talking to the kids and adults who were clearly and offensively-to-the-eyes suffering so horribly. Of course I felt terribly sorry for them, but the environment was so overwhelming. Nothing at all like the hospitals we know and expect back home - I don't know how to describe it. Individual rooms? HA! Nurses catering to your needs? SORRY, no money for that...bring a family member. It even looked as to me as though they were required to bring their own beddings. I was actually told that the cancer clinics had been recently painted and cleaned up for their open house on their 40th anniversary here - hard to imagine their previous appearance. Again, I could not take pictures of the kids or other patients...I just could not do it.
Here is an exam room in the outpatient clinic (make sure to click to enlarge):
And here is their kitchen:
The fuel to cook with:
As I noted before...bedside care...whether it be delivery of drugs or delivery of food...cannot (normally) be provided by the Institute, and so most times family members stay with their sick family members. Keep in mind, they often have to spend a month's salary or more just to GET their sick loved one to this facility and for many it means starvation or death to the family at home if they choose to remain at the hospital caring for their sick. And so what you end up seeing around the entire facility is a massive campground of people no doubt praying for a miracle.
So...what can we do? How do I wrap my head around this? One child lives because his Burkitt's is associated with AIDS (therefore his chemo is funded) and another dies because his isn't? Outside of just hitting my knees and crying : Mukama sisari! (my best attempt at "Lord have Mecy" in Luganda) I don't know what to say or do!
So I asked, how much money does it cost to give these kids their chemo. "Typically," I am told, "about 350,000 Ugandan Shillings." [Long pause of disbelief] Again Uganda has me undone...$200.00 dollars folks...to save someone's life: $200.00?!?
Hey, Michael Moore? You wanna talk about health care issues? Why not quit trying so hard to change the current political party ruling the US executive branch and make a movie about how a mere $200.00 can actually save a human life in Uganda? Right now...as I type...$200.00...perhaps even a child I personally met today.
Can anyone hear me out there? I cannot process it...how many times have I squandered $200.00 a month on crap like beer, oreos, and Pay-Per-View movies?
I am so lucky blessed that the work I am doing is being done here. I am so thankful for the experience I am having here...the motto of the FHCRC is: "Advancing knowledge and Saving Lives" but too often the REAL unspoken motto is "Publishing papers and building prestige for the Principal Investigator."
One of my colleagues is, in correlation with our work here, building a very unique charitable organization that will implement a methodology that capitalizes on the free market, private interests, the generosity of the average comparatively wealthy individual, and the industriousness, ability, zeal, and need of the average cancer patient's family members to generate SUSTAINABLE and RENEWABLE funding for the Uganda Cancer Institute. I have seen enough to know that I want to do more than just give, I want to be a part of it. Perhaps in so doing I can begin to wrap my selfish head around this all.
We've only just begun and I am very much on the sidelines watching as the plays are called. But when the game begins...when it comes time for the rest of us to help...I will let you know: over and over and over again.
Thanks for reading this far. You all likely know the following from the gospel of St. Matthew. What is striking to me...particularly now...is this this judgment has little to do with what we do with or for ourselves, but about what we DO FOR OTHERS. Given my experiences, I suppose - God help me - I can expect to be even more accountable.
“When the Son of Man comes in His glory, and all the holy angels with Him, then He will sit on the throne of His glory. All the nations will be gathered before Him, and He will separate them one from another, as a shepherd divides his sheep from the goats. And He will set the sheep on His right hand, but the goats on the left. Then the King will say to those on His right hand, ‘Come, you blessed of My Father, inherit the kingdom prepared for you from the foundation of the world: for I was hungry and you gave Me food; I was thirsty and you gave Me drink; I was a stranger and you took Me in; I was naked and you clothed Me; I was sick and you visited Me; I was in prison and you came to Me.’
“Then the righteous will answer Him, saying, ‘Lord, when did we see You hungry and feed You, or thirsty and give You drink? When did we see You a stranger and take You in, or naked and clothe You? Or when did we see You sick, or in prison, and come to You?’ And the King will answer and say to them, ‘Assuredly, I say to you, inasmuch as you did it to one of the least of these My brethren, you did it to Me.’
“Then He will also say to those on the left hand, ‘Depart from Me, you cursed, into the everlasting fire prepared for the devil and his angels: for I was hungry and you gave Me no food; I was thirsty and you gave Me no drink; I was a stranger and you did not take Me in, naked and you did not clothe Me, sick and in prison and you did not visit Me.’
“Then they also will answer Him, saying, ‘Lord, when did we see You hungry or thirsty or a stranger or naked or sick or in prison, and did not minister to You?’ Then He will answer them, saying, ‘Assuredly, I say to you, inasmuch as you did not do it to one of the least of these, you did not do it to Me.’ And these will go away into everlasting punishment, but the righteous into eternal life.”
$200.00
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thanks for sharing.