Sunday, May 26, 2013

The Faces of HIV

Out of town visitors commonly ask, “what’s the HIV rate here?” It’s a question that seems almost standard to ask for any African country. I wonder how many folks know, or care, what the HIV statistics are in their own country of residence?

“The latest figures from a 2011 survey report that in the Southwest region of Cameroon, about 5.5% of the population is infected with the virus,” is my rote answer.

“Oh, it’s that low!” they reply in a variety of surprised tones when I quote the statistics.

“Yes, and it is still too high,” I reply. They are not the ones who have to deliver the news of a positive result to each client who does their rapid HIV tests at our health centre. It is a rare week when I don’t have at least one person to inform that they have contracted HIV. It’s too many.

Would visitors still say, ‘that low’ if they met the faces connected to HIV?

Let me introduce the reader to five of the many faces of HIV that have crossed my path recently. Obviously, I’ve changed names and other details to maintain their privacy. Each face represents only the tip of that 5.5% statistic.
Face Number One:

JC was a middle-aged woman. She was dressed in a simple colourful dress with her head wrapped in the traditional head-scarf. There was nothing particularly striking about JC. She was a normal local Cameroonian woman. She farmed and sold produce in the market. Her four children went to school and helped out at home when they weren’t studying for exams. Her husband was a businessman, somehow managing to eke out a living to support his family through buying and selling. She’d come to the hospital for some minor health problems. Overall, she was generally healthy.

“The results of our screening tests are both positive,” I hand her the sheet of paper with ‘POSITIVE’ written in red, block letters next to the rapid screening tests we have in our laboratory. If the first test is positive, we check a second test.

She automatically grasps the sheet of paper I hand to her and stares blankly at the print. She holds it limply for a few quiet moments while I study her reaction. I wonder if she is able to read.

Finally she looks up at me. “Does this mean I have HIV, doctor?” Her voice is full of uncertainty and fear.

“Yes,” I answer with an affirming nod.

She doesn’t hear anything after that. Her mind cannot seem to capture the situation. I try to explain the next steps she will need to take. I try to encourage her that this isn’t a death sentence. There is treatment available to keep her healthy. She is deaf to any further words on my part though.

The anguish and confusion in her eyes that fill with tears is unmistakeable.” How can this be?” she mutters to no one in particular. She isn’t really aware of her surroundings now. “I’m married. How could I have HIV?” She glances in my direction without expecting an answer.

I don’t have one anyway.

“My children…” she whispers faintly. I can barely hear her as she stares, unseeing, at the paper in her hands.

“Yes, your children will need to do their own tests, and your husband too,” I confirm. She nods in automatic agreement to the doctor. Still, I know she hasn’t grasped reality yet. She sits in shock. There are no words I can offer that will dispel the ominous black clouds that have just thundered and overwhelmed her existence right now. No bright, sunny word will pierce the sudden shadows that have consumed her consciousness.

“How will I tell him?” She shakes her head. Tears overflow and drop unhindered onto her lap. She shakes her head. “I can’t tell him…”

I sit in silence as her current world spins out of control and down into a deep, dark, unfathomable future. After a while, I reach out and touch her hands. Troubled brown eyes meet mine and acknowledge my presence. “Can I pray for you?” I ask.

She nods.

We pray together in my office. It is such a small gesture in the face of such a huge obstacle. She gives me a hint of a grateful smile at the end though.

Many other patients are waiting to be seen. I must continue to attend to them. I let her weep for a while in the privacy of my office, closing the door behind me as I move on to other duties. I worry about her.  It’s easy to outline the practical steps she’ll have to take as a result of her new diagnosis. It’s not so easy to predict the future and whether she’ll take these steps.

Eventually, JC wanders out of my office in a daze. She is the epitome of confusion and distress. My charge nurse, Lea, notes this. She brings her into another private room and reaffirms everything I’ve already outlined. Later, when Lea and I compare notes about JC, we conclude she didn’t comprehend anything beyond, “yes, you have HIV.” We shake our heads, sad. This lady represents the face of too many Cameroonians newly diagnosed. She is not the first, nor will she be the last. The percentages are still too high. 

Face Number Two:

“What are you doing?” I asked in amazement as I swung round the imposing, wooden counter at the nurse’s station in the hospital.

Our day nurse was sitting at the desk scraping away at the well-applied label on a bottle of Niveripine syrup. A little pile of sticky shavings was gradually accumulating under the persistent scratching of her fingernail.

She looked up and gave me a wry smile. “Taking off the label, doc.”

That much I’d observed. “Why?” I asked curiously. It certainly was not standard procedure to scrape off labels from medicine bottles. (We haven’t become that desperate for dispensing containers.)

“The patient doesn’t want anyone to know,” our nurse replied placidly.

“I see.” I knew exactly which patient she alluded to. KT was one of our new mothers in the maternity ward. Two days ago she had delivered a healthy girl, weighing almost four kilograms. KT was a modern woman, University educated and well spoken. Her commanding presence made people stop and listen to her when she entered the room. KT was also one of our patients who was HIV positive. She took her treatment rigorously and now her newborn would be taking Niveripine syrup until she finished breastfeeding her.

Earlier that same day, one of my nurses had pulled me aside in between seeing the patients in our outpatient centre. “Doc, she says you have to change it.” My nurse pointed to my discharge instructions written in KT’s medical booklet. “She says she has friends who are medical people. She doesn’t want them to know.”

“Ok. What shall we put down as a reason for the baby’s six week blood test?” I thought about it for a moment. “How about ‘return in 6 weeks for vaccination’?”

Our nurse approved and nodded her head.

Now, as I watched our hospital day nurse continue to scratch off the label on the baby’s syrup, I was not surprised. KT was just another example of the effort people living with HIV take to conceal their diagnosis. Although even the little primary children can talk about AIDS and HIV freely, the infection is still a shameful secret.

KT and her baby boy went home later that day. She was satisfied. Her medical book was clean of any hint or obscure implication of HIV and her baby had a good supply of Primulin cough syrup.

Face Number Three:

“Are you sure this is correct?” I pointed accusingly at the patient’s recorded weight. At the top of the page, in the vital signs section, my nurse had penned, ’35 kgs’. But the patient was twenty-four years old! An adult. No adult is supposed to weigh 35 kilograms unless they’re a dwarf – which I seriously suspected she was not.

My nurse peered at the offending number under question. “It’s correct, doc,” she cheerfully answered. She clucked her tongue in disapproval at the weight though. “Her stomach is just stuck to her spine.”

I nodded in acknowledgement and sighed. Thirty five kilograms in a 24-year-old female that, according to my nurse, was still breastfeeding her 6-month-old infant, could not be good.

“Where is she?”

“They took her to the ward.” My nurse shook her head and frowned. “She’s even too weak to walk. They had to carry her.”

Well… ‘too weak to walk’ turned out to be the understatement of the week.

By the time I made my way over to the hospital from seeing outpatients in clinic, the young mother, SH, was already receiving her first bag of IV fluids and medications. A tiny black wisp against a cloud of white sheets. I gathered from the friends and family that had insisted upon her going to the hospital, that SH had been rapidly dwindling away over the past four months. She’d finally reached the point where she could not eat, could not stand, could not feed her baby. Only then did she assent to coming to the hospital.

“She’s weak, doctor!” Her companions crowded round me and pointed to SH lying in bed, their eyes filled with worried concern. “See, doctor, she’s really weak.”

I nodded. I didn’t need their emphatic repetitions to convince me of the fact. SH lay motionless in bed, an IV bag hanging next to her with the tubing snaking down to a vein in her hand, a slow drip attempting to infuse some strength into her flaccid shell. As my nurse had so aptly put it earlier, her stomach and spine did lie in almost the same horizontal plane. Clearly this was not just an acute attack of malaria or gastroenteritis. Her illness had been gradually dragging her down for a few months.

“SH?” I touched the patient on her shoulder in an attempt to rouse her. Her eyelids flickered open for a moment while she made some attempt to focus on my face, then, just as abruptly they rolled back leaving only the whites of her eyes visible. “SH?” I tried again. This time she made no effort to respond. I left her to continue her treatment, hoping that some fluids and medications might improve things over the next day or so.
“Thanks,” I replied as our lab technician handed me the results of her HIV test. I already knew what it would say. My lab tech only hand delivers positive results, after all.

“The family says she did the HIV test when she was pregnant and everything was OK,” he commented as he turned to return to the lab.

“I see,” I murmured, not actually believing such.
The next day, SH was a bit brighter. She was awake enough that I decided to discuss the results of her HIV test with her. As I suspected, she didn’t blink an eye when I told her the news. There was still her husband to consider.

“Can we discuss your test results with your husband?” I asked leaning close to her face to hear her response. The briefest of an affirmative nod gave me permission.

“But how can this be?!” the husband exclaimed, his hands flying up in dismay at the news.

“The test doesn’t tell us that.”

“But,” he paused and seemed confused. “But, they did four or five tests when she was pregnant,” he ran his hand through his short, cropped hair, fear, confusion, dismay, written across his face. “They said everything was fine.” He bowed his head in thought.

I sat across from him. My nurse was present to help in any communication difficulties. “Do you have any other questions?”

He looked up, “but, doctor, I did my own test… it was negative.” His eyes pleaded with me, as if I could change the diagnosis based on this new piece of information.

I sat and let him absorb the news.

“But, doctor,” he tried again, “how did she get it?”

I shook my head, “I can’t tell you that. The test only says that she has HIV, it doesn’t tell me when she was infected.”

He sat quiet for a few moments. “But doctor, how?”

My nurse piped up this time, “we can’t tell that.”

The husband just bowed his chin and shook his head, “but how?” he repeated to himself several times.

His wife showed no reaction. I suspect she slept through the whole exchange. She was a passive vessel in the hands of the medical personnel now. Every ounce of strength and ingenuity had been used up in fighting to hide her diagnosis. She’d not taken medications nor given her baby medicine in a vain attempt to ignore the disease. Fear had trapped her and eventually destroyed her. Because of the shame associated with HIV, she’d hid her secret until she was dying.  She would rather die than tell anyone of her HIV. 

Now her life hung in the balance. Whether she would live or die was uncertain. Sad. Yet another example of how far people will go to bury their diagnosis of HIV.

Postscript: Patient was transferred to an HIV centre where she was hospitalised for an extended period. Gradually she did recover. She’s now on anti-retrovirals. Her baby tested positive. Her husband has disappeared.

Face Number Four:

“No, no, doctor, they checked all that when I was in America,” JW assured me hastily. I had just asked her when she had last been checked for HIV. “They said everything was fine,” she stated emphatically.

I frowned but nodded in acknowledgement of her words. Chronic diarrhoea, weight loss, weakness, and anaemia -- I was not impressed with the overall medical vibes I was getting from this well-to-do, educated, middle age client. In spite of her insistence that everything was fine, I added a rapid HIV screen to the normal laboratory tests for malaria and gastroenteritis. 
“Doctor, can I talk to you?” My lab technician was knocking on my office door with a piece of paper in his hand. 

“Yes, come in.” I closed the door behind us. 

“Doctor, there’s a problem,” he paused a moment searching for the words to describe the situation accurately to me. His fingers twitched nervously. “You see,” he continued, “that patient you sent for HIV testing… well, she changed her mind. She agreed to the test initially but now she says she doesn’t want us to do it.” He shifted his weight to the other foot and handed me the paper. 

“Uh-huh?” I queried looking at the paper.

“Well, we’d already run the sample and it’s positive but now what do we do? He refuses to agree to the test. I’ve even talked to her again.”

I looked at the positive results and then folded them up and stuck them into my pocket. “Well, we can’t force the patient.” I shrugged. If the patient didn’t want to know, it wasn’t my place to force the issue. Obviously this might alter my diagnosis and treatment plan but… well, we’d have to talk. 

My lab technician exited and returned to his duties. The rest of the lab results were soon completed.

“JW,” I called, inviting her back into my office to discuss the results. 

She strolled into my office and we sat down. “So you have malaria and an infection in the stomach,” I showed JW her medical book. Then I sat back. “I don’t see the HIV test. What happened?”

JW fidgeted in her chair and her eyes darted around the room avoiding mine. “I’m not prepared today. I’ll come back and do it,” she stammered at last. 

“You can still do it today,” I replied watching her closely.

“No, no, tomorrow, doctor,” she answered quickly with rising apprehension. 

In spite of our conversation, she remained adamant that she didn’t want to do the test. At last, I wrote out prescriptions for her acute issues with a scheduled follow up. 

JW would rather ignore the threat than face reality. Not doing the test allowed her to believe she was fine. I watched her leave and shook my head. She was already a WHO stage 4…
idn’t stay away long. In spite of the acute treatment for malaria and intestinal issues, she remained weak. She couldn’t eat properly. She continued to have diarrhoea. She spent a couple days in the hospital undergoing rehydration. During one of his weaker periods, I finally convinced her to do the HIV screening test. “I
JW dt’s positive,” I showed her the results in the privacy of my office. JW took the paper and stared at the red letters. “So what does this mean, doc?” she asked, looking up at me as if daring me to agree with the test results over her own statements to the contrary.
. I outlined the steps he needed to take to begin anti retrov
“It means you have HIV,” I replied, undeterred by her attitude. She laughed. “I don’t believe it.” I shook my head. “We tested twice. Both tests were positive. You have symptoms of HIV too.” “So what am I supposed to do then?” she asked with a façade of indifferenc eiral treatment: the tests, the centres, the possible drugs… She nodded casually. “Well, ok, doctor.” She folded the results up and stuffed them in her pocket. “Thanks.” “You should go tomorrow,” I added. “I’m not sure if I’ll have time,” she answered and picked up her briefcase.
I handed JW her medical book. “If I were you, I’d go sooner rather than later.”
“Ok. I’ve heard you,” she dismissed my warnings and turned to leave. “Thank you.”
JW never went to the HIV centre. I never saw her again. My staffs tell me she died two weeks later while driving on her way to see me.

Face Number Five:
Six years old. Small. Fragile. Orphaned. Vulnerable. MH lived in the village with his Auntie and her family. His own parents were gone and he subsisted on the goodwill of his relatives. Auntie was too busy with eking out a living to bother about her shadowy nephew. His basic needs were met; but he was certainly not coddled. He would never be on equal footing with Auntie’s own sons and daughters. And, when times were tough, which they almost always were when one existed from day to day in the village, little attention was wasted on a child, least of all one not your own.
One day, MH went to the local health centre. Perhaps it was for the persistent cough; maybe it was the constant on and off diarrhoea; maybe his bones finally jutted out at angles so painful that Auntie could no longer ignore them; maybe it was the fever – whatever the reason, MH found himself sick and in the hospital. It wasn’t difficult to make the diagnosis. The astute medical personnel, noting his family situation and symptoms, ordered an HIV test the same day. Not surprisingly, it was positive.
“You need to take the child to the HIV centre in B*,” the nurse informed Auntie as she handed the surrogate mother the lab results.
“How?” Auntie spread her palms in supplication, her eyes full of helpless appeal. How could she afford transport money on a nephew? She barely had enough to feed her own brood. How could she find the time to leave her farm and her crops that brought in her income to take him to his hospital appointments? How would she ever find the money for the tests that needed to be done in order for MH to begin antiretroviral therapy – a CD4 count was 7000 xaf – an enormous sacrifice for a poor farmer?
The diagnosis of HIV for MH was only the first step in a long line of obstacles to overcome before the ‘free’ drugs became available to the patient.
There are three official HIV treatment centres in our local area. It is not uncommon for the centres to run low on their medications. New patients are turned away because there is not enough in stock to continue supplying the current participants and begin treatment in new enrollees. Often the CD4 machine breaks down. It takes weeks to get the replacement part or reagent. During that time patients must either fork over extra money or wait. Then there are the less-than-reputable healers – preying upon the desperate fears of those with HIV and offering false hopes of cure.
The number of people who stop taking their medications because they have been ‘cured’ is too many to count. Money. Shame. Social stigma. False information.
There are plenty of holes to sift out all but the most determined to get proper HIV treatment.
“Is he still alive?” I asked, incredulously. The serum creatinine was 5.6 mg/dL.  (normal is less than 1).
“Yes, he’s alive,” my friend replied. “They want him to do more tests including an ultrasound of the kidneys before they’ll consider treatment though.”
It was a miracle that MH and his Auntie had found the money to travel to B* health centre and pay for the CD4 count, the venereal disease screenings, the blood count, and the creatinine. “How can the common person afford all this?” My friend and I just shook our heads. Most would have to give up. Close but not close enough.
“He has to go to the regional hospital for these new tests. They’ll cost over 10,000 xaf, closer to 20,000 xaf, probably,” my friend expressed her concern. Who would pay such money for a child that wasn’t even their own.
“Can you believe it?!” I nodded in empathy as my friend filled me in on the health of MH the next day.” It turns out that the lab lost their electricity after MH’s blood was drawn. The blood sat out over night. Next day, they ran the blood. No wonder the creatinine was so high!”
“Yes, that would do it,” I answered.
“A waste,” my friend continued. “Money spent on transport to the big hospital, a repeat creatinine test, and a kidney ultrasound.”
“Why didn’t the lab just report that the blood sample was spoiled by the time they could test it?”
“I don’t know,” she shrugged her shoulders, frustrated.” Can you imagine!”
“Sad,” we shook our heads in unison at the events of the past few days regarding MH’s care.
“So, will they start him on anti-retrovirals?” I inquired.
“Yes, the creatinine was quite normal when checked a fresh blood sample. His CD4 count is less than 200.”
“It’s a miracle this little boy received the help he needed. But just think if he hadn’t had some outside assistance…” my question did not need an answer. We both knew.
How many people are diagnosed with HIV but then fail to get the proper medications? How many are stopped by lack of transport? How many are halted in the process by lack of money for the required basic laboratory tests before antiretrovirals can be administered? How many are confused and lose their way by faulty lab values or false promises of miracle cures? How many never go for treatment because they are afraid of being recognised at the HIV treatment centre? I don’t know the statistics. Statistics are important. In the case of HIV… it’s the faces that cross my path on an almost daily basis that speak louder than any number though. For me, the answer is  ‘too many’.
Postscript: MH is on his medications and doing well. He has regained all the lost weight and looks like a normal child again.  He’s one of the lucky ones.