AIDS patients and privacy

I have been inspired to write this post by a group of AIDS patient with whom I have been working recently. They were telling me about the harsh consequences they have to go through on daily basis because they are not anonymous.

But why are you not anonymous, I asked naively?

And they took me on a journey of betrayal, lack of professionalism and a culture that simply does not know or understand the concept of confidentiality.

Their problem starts at the center where they need to go every month for treatment…… one of them and lets call him Mahmoud says that “we all learnt about each other there’s existence at the center, you go into the center and everyone sits together, doctors, visitors, patients, reporters… there are signs all over the place that show us where we should go…There is no anonymity, there is no confidentiality, there is no privacy…throughout the years we identified each other and became a group… what gathers us is our tragedy.”

They told me a story after a story of how hospital staffs, who are supposed to package professionalism and sell it in the market… are not professional ….oh boy, these guys have never even heard of the word! They would call them from the waiting room “AIDS come here!” or would write on their files AIDS all across in red, bold and underlined so that every single person who works with that file would know who they are! We should not forget that medical staff should take an oath of secrecy as a condition to get awarded their degrees!

They then explained how Jordan is a small place and everyone knows about everyone… they explained that … somehow the news reached their families, their landlords and their managers… all by accident! subhan Allah! these people whose skills vary often find themselves homeless and jobless…and struggling to work for living.

I started looking around me when I heard their stories… and it suddenly dawned on me that the concept of confidentiality simply does not exist in this culture… you go to any bank and the booths are so close to each other. They are only divided by a short what is referred to as (securite) wall. You would be explaining your problem and it won’t be surprising if the client sitting in the next booth will start giving their opinion.

You go to an administration office… This happens to me with the office I work with these days… the manager says every time we are there to his secretary please close the door and do not allow anyone to come in… and to her, it sounds like, please let anyone who asks come in! actually invite them…get them from the street and have them come in while we are in meeting!!!

At some point there was a money transaction that was supposed to take place… I had to write the manager a note asking him if he preferred to do this transaction confidentially… and he simply smiled… he was embarrassed… he wanted the transaction to be confidential, but could not ask the coffee drinkers to leave, because it is 3eib!

No resolution here… the different standards by which we live our lives still shock me… we are so much in love with our privacy… our homes are designed around privacy, yetwhen we are in a public domain, we don’t even know what that means… We are so clean in our homes, and the moment we step outside, our eyes don’t flinch when we throw garbage on the floor. We pretend to be religious in front of people and then when we are alone, we sneak out for a drink… we kill our womenfolk during the day for honor and then we go spend our nights with whores…

fascinating! truly is!

bambam

July 15th, 2008 at 13:31 · Reply

hey thanks for the post, that was a breath of fresh air.
if i may ask, what sort of work were you doing with them. and if it’s volunteer work who can i contact in order to participate?

Madas

July 15th, 2008 at 15:38 · Reply

I am trying to find them a program, i try to invlolve them in small things here and there… but if you are serious about it, please me let me know… i am sure we can find something to do… What kind things can you do? we are thinking of a documentary for example… is that part of your domaine? i don’t know… i think we could talk more.

mr.anonymous

July 16th, 2008 at 19:26 · Reply

As if the patient doesn’t already have to deal with a lot. Those “Medical Professionals” should be stripped from their jobs dishonorably,until they learn the ethics of what they do!

Don’t let people with double standards get to you madas,I know they are all over the place,but these kinds of people are specifically insecure and can be taken down easily if they think of mis approaching you.

July 16th, 2008 at 23:22 · Reply

Thanks for your kind words… I don’t think they get to me … i think I am just fascinated… seriously fascinated….I just don’t understand how we remember the different roles we play in our daily lives….

July 17th, 2008 at 13:04 · Reply

madas i don’t know exactly how i would help but my email is on this comment, please get in touch with me so we can discuss what can be done since i’m interested in helping in whichever way i can here.

regards

David

July 18th, 2008 at 06:55 · Reply

The absence of anonymity for Jordanian AIDS patients is really unfortunate. The fear of public humiliation will discourage people from getting tested for the disease. If they won’t get tested, they may continue to spread the disease to other people, or they will delay getting treatment for themselves until it may be too late.

In the U.S., anonymous HIV testing had been available in most cities for years now. Doctor patient confidentiality is a very important and long established principle. However, one thing that works against this principle is that health insurance companies demand to know a patient’s health history before allowing her/him to sign up for insurance. Most, if not all, private insurance companies will not enroll a person with any sort of chronic health problem. Compounding the problem is the fact that insurance companies share information about patient health histories with each other. America really needs a national health care system that will give everyone access to the system regardless of the state of their health or their ability to pay for treatment. Anyway, as you can see, I have reasons to be very disappointed about health care in America!

I can assure you that American people are equally guilty of hypocrisy! Many pretend to be religious, but when they think they can get away with it, they will do all variety of immoral acts.

July 19th, 2008 at 07:55 · Reply

David,

As usual thanks for your insightful comments I think the problem is cultural here… people are very curious, we are simply not used to better.. Everyone gets in everyone else’s affairs… it borders the hilarious sometimes.

I think hypocrisy exists in any society that follows organized religion… this is the case in Jordan and the case in the States… as long as you are required to rise above humanity… people have no choice but to become hypocrite…as long as we get our status from a society that sees being religious as decent… then we have to have parallel lives… I mean as a friend of mine used to say.. .and please forgive the crudity and the vulgarity of the comments… but everyone shits and everyone fucks… it is just human.

July 19th, 2008 at 20:06 · Reply

Your friend is quite right Mariam, everyone has certain physiological needs that must be satisfied and sometimes the dogma of organized religion is in direct conflict with those needs. A prime example is the Catholic Church’s requirement that priests must be celibate. Well, unless a man is castrated, this is nearly impossible. I think that the Catholic Church teaches that masturbation is a sin, so what is a priest to do? Well, homosexual acts with other priests may satisfy their libidos, which is an even worse sin. Or, some priests are driven to become pedophiles which is a horrific crime, in my opinion.

I think there are some issues of morality that transcend any sort of religious dogma. For example, a person should never lie or break promises. I suppose that some would argue that lying to the enemy during war time is a moral thing to do. Perhaps it is. During WWII, the Americans and the British convinced the Germans with fake radio transmissions that the invasion of France would take place far from the actual landing zone in Normandy. This ruse probably saved many thousands of Allied lives. However, simply one person lying to another where there are no lives at stake, is completely immoral, as far as I am concerned.