Medical Injustice: Don't get Type 1 Diabetes in Ghana (unless you're rich!)

Before I get into Night 4 of our hospital stay, I need to take a minute here to vent about injustice; specifically, the injustice perpetrated by medical product manufacturers and pharmaceutical companies to third world countries, such as Ghana.

Alexandra, as a Type 1 diabetic, has two very basic but very specific lifelong needs. She needs to check her blood glucose levels several times every day, and she needs to have insulin administered via multiple daily injections.

Alexandra is lucky. Not because she has Type 1 diabetes, but because she has parents who have the means and access to the things that she needs, in order to keep her alive. Not to draw too fine a point on this, without regular glucose monitoring and daily insulin injections, Alexandra will die.

I and my husband and our family will do all that we can to prevent that. We will ensure that she has her glucose levels tested as often as necessary, sometimes 6 or 7 times a day. And she will have the insulin injections that she needs to bring high sugar levels down, at least twice a day, but sometimes more. And she will be provided with appropriate and nourishing food to ensure that she will grow and thrive. It’s a tricky balancing act, but we are more than up to the task. We have our most precious commodity to consider.

Not many Ghanaian kids with Type 1 diabetes are as lucky as Alexandra. I spoke with Alex’s doctor last week, and told her that I was receiving a lot of online support from a wonderful network of parents of children with diabetes. In fact, I told her, besides the advice and encouragement, we had been offered additional glucose meters so that Alexandra could have an extra to bring to school, and one we could keep for an emergency.

When I mentioned this, Dr. Renner pointed out that the majority of her T1 patients didn’t have the glucose meters, because their parents couldn’t afford it. The meter that we bought, as soon as we were told of Alexandra’s diagnosis, cost equivalent $62. The meter strips, absolutely necessary meter strips, cost $40 for 50 strips. The lancets for the finger pricks are $20 for a box of 100. The insulin was about $17 per vial. We paid cash for all these things, and we continue to buy the strips on a regular basis. So far, I estimate, we’ve gone through about 250 strips. That would be close to $225.

Now, Dr. Renner told us, that because the parents can’t afford a meter, they don’t monitor their children daily. If they have an extra cedi or two, they might take the child to a local chemist who can check the sugar level there, for a fee. But usually, they wait and hope for the best, and if the child falls very sick, either due to low blood sugar (too much insulin) or high blood sugar (not enough insulin), then they take the kid to the hospital and admit him. It’s actually less expensive to admit a child to the hospital for a couple of days than it is to buy a meter and the needed strips.

What a sin. In the United States and elsewhere, the companies that manufacture glucose meters are giving these out free, like candy, to diabetics. Several parents on the support board had two, three or even five free meters in their house and were kind and generous enough to have them sent to me, through my Mom in N.J. We plan to donate these to the hospital.

Insurance in the U.S. covers diabetic needs, though it varies state to state. In Canada, it’s covered under social medicine. In the Ireland, and I suspect the U.K., they’re also covered. A friend of mine from Ireland told me that meter strips are free there; her husband is diabetic, so she knows. Ghana has National Health Insurance, but it only covers insulin, not the expensive strips. I estimate, in Alexandra’s lifetime (which I hope will be a very very long one), she may use 100,000 glucose meter strips. Isn’t that a frightening statistic? What typical Ghanaian family can afford that? None is the answer.

Don’t third world countries suffer the same medical tragedies as other developed countries? Don’t we have enough injustice here, in all other aspects of life? Shame on LifeScan and Bayer, and all of those other international glucose meter companies… couldn’t you donate a couple of these meters to the hospitals here? No, why not? I’ll tell you why -- because it’s not profitable, and that’s their bottom line. Not helping humanity, it’s to make a Buck or a Pound or a Euro.

Don’t average Ghanaian kids with Type 1 diabetes deserve the same chance to live as Alexandra?

Barb

P.S. I want to personally thank the wonderful people (especially you, Adjoa in Vancouver, B.C. and her sister here in Ghana who forwarded my blog) who have donated meters and strips, for either Alexandra's personal use, or as a donation to the teaching hospital for Type 1 diabetic kids. God bless you all.

Night #3: Rainy night in Accra or "Yikes, the hospital roof is leaking!"

Saturday night saw a great big thunderstorm, and let me tell you, we can use all the rain we can get. We're still experiencing a slight problem with the water levels in our hydro dam, so a little bit rain means fewer "lights off" scenarios.

Except, that the roof leaks. About midnight, right after I'd done Alex's sugar test, I could hear rain outside the window, which is normal, but could also hear it outside the door to the room, which is not normal. Because her level was too high, I had to go tell the nurse who'd have to come and give her a fast acting insulin. I open the door into the hallway, and step into a puddle of water about two inches deep, and about 10 feet in diameter. I'm so glad I had flip-flops, and not my fuzzy bunny slippers on.

This, apparently, is par for the course, as the maintenance man tells me the next morning. "We complain and complain, but no one cares... there's no money to fix it." I can't imagine this ever happening in the states. What a mess. All of the next day, there were half a dozen buckets spread along the corridor to catch the water that must have pooled on the roof.

Alexandra is excited today, because her brothers are coming to see her for the first time. They come in quietly, toting bags of milk and apples for Alex (and Diet Coke and Snickers bars for me), and lunch from a fast food restaurant at the Accra Mall... Barcelo's chicken sandwich is to die for, it is sooo juicy! Alex gets a grilled chicken drumstick and fries (chip, we call it here), and wonders where her candy, juice box and toy are? This is gonna be a hard habit to break.

Mike brings some of his toys for him and Alex to play with, and Sean brings his apron. Yes, you read that right. One of Sean's classes is sewing, and he has brought me his apron to help hem. Final exams are the following week. He's asking for help from the wrong person, let me tell you. I failed home ec in high school. Mrs. Tierney just hated me. It takes me about 90 minutes to finish the hemming (I have got to get needles with bigger eyes... it took me 5 minutes just to thread each one!). Finally, finished, it looks fairly neat and the stitches are about as crappy as Sean's, so the teacher will never know an adult helped. Ha!

While I'm playing Susie Homemaker, Sean is messing around on my laptop; he some how gets wifi (how come I couldn't?) and is quick to jump on Runescape (do all kids obsess about this game?). Then, within minutes, there's a fight for the login rights to the game.

Poor Sly had to leave, and is running the diabetes-related errands again. Today he's on a hunt for the insulin pen and cartridges. Parking is horrible in this city, so he grabs a taxi and heads for Accra Central. No luck at the doctor recommended chemist shop. No luck at three other pharmacies he tried either. But Sly got a winner of a taxi driver who tells him he knows one that might have it, so off they go to Labone. Sure enough, the place has got the pen and the cartridges. As it turns out, this shop is 2 minutes from Sly's mother's house... if Sly hadn't been trying to avoid going past the family house, he might have been there earlier, but that's neither here nor there.

By the time he gets back to the hospital, it's starting to get late, and they all need to head back home. Sly cannot drive at night, and night falls very very quickly in the tropics. Alex gets a little depressed watching them leave her behind; I know she wishes she could go home, too, but the numbers are still way too high.

When they get home, Sly calls to tell me they arrived safe and sound, and were just getting ready to eat dinner. Then he tells me that Sean ironed a hole into his apron, right on the part I just finished stitching. He was so upset, he went and hid in the bathroom for 20 minutes (at 13, he's too big to cry in front of his dad, you know how it is). Another home economics failure... must be in the genes.

Pretty soon, Alex and I are back into our regular nighttime routine of watching the Wizard of Oz, and eating sugar-free oatmeal cookies and drinking a glass of milk before bed, and then it's off to la-la land. For one of us, at least.

Once Alex falls asleep, I decide to go down to the shower and get myself ready for bed. I hear water running (unless it's my imagination, now, since I've been hearing drip drip drip all day long), and push open the door to the "amenity ward" shower, and there's a soapy naked man in there! Oops! I can only see the back of him, but I can tell it's the maintenance man. I open the door and he's apologizing. "Don't worry," I tell him, "it's more your shower than mine. Sorry." The poor guy, I probably embarrassed the hell out of him. Didn't bother me, though. Hey, if you've seen one naked black butt, you've seem 'em all.

Korle Bu: Day 2/Night 2

This morning, I beg the nurses to take the IV drip out of Alex’s hand for a little while, so that she can have a shower. Now, I’ve already been down the hall (at about 4:30 am since I couldn’t sleep) and had my morning shower. The water is cold, in case you hadn’t guessed, there’s no hot water heater here. But it’s a refreshing cold, you know, so it didn’t bother me. Yeah, and tofu tastes like chicken. But I can’t subject that to Alex, so I heat up water in a kettle and pour it into our shower bucket, so she can at least have a bucket shower in warm water. I realize that it will be a bit tricky for her to have a shower but not get water on the bandage, so we wrap her hand up in a plastic bag and I wash her down. She’s mostly clean. Good enough.

______________________________

The blood sugar meter we’re using is a OneTouch Ultra 2, and I assume it must be fairly new on the market, because the nurses have never seen this one before. No one knows how to work it. So, they ask me. They’re asking me? How the hell do I know how it works? I take the instruction booklet, and try to figure it out myself. Settings, time, readings… okay, I think I’ve got it. For the first 24 hours, the nurses come in and get the meter from me, then do the test on Alex. I’m forewarned, though; today I’m going to start learning how to do this myself. Guess I’ve got no choice, unless I take a nurse home to live with us.

The nurses come in the early afternoon to teach me how to take Alex’s blood sugar readings and how to give her an injection. This ought to be good. A group of about 4 of them stand over me to watch, it must be a pretty funny sight, or else it’s a slow day on the ward. Alex is biting her lip. I know she’s nervous, and I’m nervous, but this has got to be done.

Okay, wipe off the finger tip, put the strip into the meter… no the other way, check the code. Wait, where’s my glasses? I can’t see without my glasses (it sucks getting old). Check the code, what code? Oh, okay, that code. Got it, match. Now prick her finger. Damn, I wish I didn’t have to do this. Jab. Blood. Good, that’s what I was hoping to get. Enough for the reading? Counting down: 5-4-3-2-1. Success!! She’s HI. So what else is new?

Now the insulin shot. I’m an old pro at shots, or so I think. I used to be an IVF patient, and sometimes had to do this kind of stuff to myself. I’ve got to first draw air into the syringe up to the 4 unit mark (God, the markings on this thing are so tiny!), then inject the air into the vial while it’s upside down. Then, I’ve got to draw the 4 units into the syringe. Remove the syringe, wipe down Alex’s arm and inject. No problem. I can do that. Like riding a bicycle. It all comes back to you, right? Except, I do it wrong.

Back in the old IVF days (15+ years ago, mind you), you kind of made a dart throwing motion to get the needle past the thick skin of your butt. I did this to Alex’s skinny little upper arm. She yelped and the nurse oh, oh, ohed, and I knew I screwed up. Gently, gently. Pinch the skin and insert the needle a bit shallowly. Shit. I hurt my daughter. She’s rubbing her arm and shooting daggers out of her eyes. Is this going to get easier?

The nurses depart (with a story to laugh about for at least a week or so), and Alex is apparently already over the needle fiasco, asking me what’s for lunch. God, isn’t it great how kids bounce back? Well, not sure what lunch is going to be, since Sly hasn’t gotten here yet. The fridge is stocked with fruit, milk, yogurt and cheese, and we’ve got corn flakes and cream crackers on standby. After the prerequisite 30 minute after injection wait, I make Alex up a plate of everything. She eats ravenously, and it’s really nice to see, since she had no appetite over the past few weeks.

Sly finally arrives back at noon, but he can’t stay that long. We have to send him on another errand for more insulin, and he has to go to two labs for the test vials for more of Alex’s blood work. Normally, the patient would go to the lab, make the payment and then they’d take the sample and run the test. With Alex hooked up to the IV, Sly had to do the preliminaries, then we had to get a doctor on the ward to draw the blood, then Sly had to deliver the samples back to their respective labs. Poor Sly. But I am so thankful he’s here, otherwise I’d have to do it. By the time he comes back from running all around the hospital grounds, its 2:30 pm. His cell phone rings. Problem. Its our taxi driver who calls to say that because it’s Friday the boys got out of school early. Crap. We totally forgot. We tell Ekow to take the boys to a local café and let them have something to drink and Sly will be home as soon as he can. Oh, well. They’ll live.

Before he leaves, Sly goes off to get us some food, fried fish, kenkey and white rice. That’s dinner for both of us, plus her fruit, milk, cheese, etc. She’s turning into a little pig, but it’s good.

Alex’s blood sugar levels keep saying HI, and the nurses think that maybe the meter is broken, but when she’s tested on another meter, they both read the same. I guess we’ll just have to wait for the drip to flush her out more.

Another long night is ahead of us, but at least this time we know what to expect. Or so I think. About 2:00 am, Alex wakes up and says she has to use the toilet. Not the bedpan, but the toilet, she’s got to go. Now, she’d been constipated for a couple of days, and nothing seemed to loosen her up at all. I’m thinking maybe all this drip is softening the system up, you know. So, off we trot down the hall to the bathroom, and we stop at the nurses’ desk to get unhooked from the drip.

She goes in and sits and sits and sits. Nothing. I’m waiting outside, poking my head in every few minutes. Nothing. Ten or fifteen minutes of nothing. I suggest she forget about it and try later. No such luck. She absolutely refuses. She says, “It’s right there and it’s got to come out and I’m not leaving until it does.” She’s almost in tears. Thirty minutes later, and she’s still sitting there. Finally, I hear noises, and its not just grunting and heavy breathing. Persistence pays off. I retrieve the water to flush, and she gets reattached to her drip, then we’re back in the room washing our hands and sanitizing and she goes back to sleep with a peaceful look on her face. Cue the James Brown, “I Feel Good” music.

Good night.

Night 1 – Korle Bu Children’s Ward

At about 7:30 p.m. we got a phone call from Sly, and the boys were standing by to talk to us. Sean had a limited understanding of what Alex was going through, but was worried and solicitous on the phone to Alex (not normal, trust me). Then Mike got on, “wuz up?” I believe was his comment (very normal, trust me). He told me on the phone that he wanted to bring Alex something when he saw her. I told him that she couldn’t have anything with sugar in it, no soda, no juice, no cookies, no candy, no cake. He listens to that, pauses and then says, “Okay, so what you’re saying is I can give her water.” Smart ass. But, yeah, I guess it did sound like that. Know what he brought her? He made her a necklace out of some buttons and, get this, a plastic chocolate chip cookie that came with one of Alex’s cooking sets. Why not rub salt into the wound.

Believe it or not, with the exception of giving birth, I had only once been away from my boys overnight. It felt weird not to give them their good night hugs, which they both come in for every night, even waking me up if I’ve dozed off.

As exhausted, both physically and mentally as I am, the night just dragged and dragged and dragged. I couldn’t sleep. Of course, it doesn’t help that the nurses were in every 2 hours to check Alexandra’s blood sugar level, and then give her an insulin shot every 4 hours. They are extremely vigilant, as much as any nurse in any U.S. hospital. Just not as chatty.

Alexandra’s blood sugar numbers were so high that they don’t even record; our glucose meter, a OneTouch Ultra 2, only registers to 33.3 mmol/L (which is equivalent to 599 in the States), and so it could have been significantly higher than that. We’ll never know, it just says HI. In any event, whether it’s 33.3 or HI, it’s too high.

The doctor has said that Alex’s reading should be between 4 and 8. Jeez, and I kept wondering, is that even achievable? We’re working towards it. As I go through the meter readings, I see that the numbers didn’t even budge until she’d been on insulin and the IV drip for a full 12 hours, and then they dropped too far and she had to be given glucose to bring it back up. Up and down and down and up. At one point, she was 2.9 (52 in the U.S.) and within 2 hours she was at 31.1 (560). It was crazy.

What was also crazy is that we didn’t get any information on what Alex should or shouldn’t be eating. I was scrutinizing packages in the little store on the hospital grounds to see what was sugar-free, totally neglecting the fact (that I’ve since tattooed on my brain) that carbohydrates convert to sugar, too. So the sugar-free oatmeal cookies had enough carbs in it to make the sugar-free point totally moot.

So, anyway, our first night… up every 2 hours or so, shots every 4. Alex took it like the champ that she is. Naturally, I couldn’t sleep. I’d scarcely drift off and the nurse was back. If it wasn’t the nurse, then it was some loudmouth in the hall outside who didn’t realize (care?) that there was a sick kid in the room. Some time after the midnight check (12:34 a.m. 22.7 mmol/L), I gave up and pulled out the laptop. I had, fortunately, remembered to ask for my mini-modem, which has pre-paid units loaded onto it. MTN made a small fortune off me that night, the frigging rip-offs… it cost me about $7 for a lousy 20 minutes online. I needed to email my mom and tell her the news anyway, and ask her to pass the info on to my brothers and sisters. My mom puts CNN to shame, that news was out there so fast, and by the next morning, I had notes and e-cards galore for Alex to read.

Alex was funny when she opened the e-cards. She’d read the message, listen to the music, watch the video. And then she’d say, “Is that all?” She is so used to getting real paper cards (with money in them!!) from Grandma, that she couldn’t really be bothered with the cyber version. Boring. Oh well, I enjoyed them.

By 6:00 am we were both up, since Alex needed her insulin shot and had to eat a half hour after that. Her breakfast was tea with milk and a fake sugar tablet, cornflakes and milk, and a banana. Then we watched the Wizard of Oz. Again.

Today, the plan was to learn to do the glucose blood readings. Doesn’t that sound like fun?

Later!

5 Nights in Korle Bu Children’s Ward Diagnosis: Type 1 Diabetes

It’s been a long while, I know, I know. Things have been busy and work has been steady and I could hardly find the time to do anything writing unless it was for money. Until now. I am now on a self-prescribed work slowdown. I have no choice.

About three weeks ago, we took Alexandra to the doctor for a check-up. She’d been listless, losing weight, waking up several times overnight to go to the bathroom, then sipping water before she even slipped back into bed. Now, at first I attributed the night time excursions to the toilet to the fact that she had wet the bed one night (sorry Alex, she begged me not to tattle, but it’s part of the story), and she knew I wasn’t happy about that. I figured she was trying to prevent a repeat performance by getting up 4 and 5 times. But the frequency to the bathroom, her thirst, her utter exhaustion, and finally, seeing the knobbiness at the top of her spine… I knew something was really wrong. I just knew.

I am not a doctor, by any stretch of the imagination, but I am “aware” of the symptoms of diabetes, and was worried sick because Alex exhibited all of them. I didn’t tell my husband what I suspected, this is his little princess, and he needed to hear the grim news from a professional, not his wife.

Unfortunately, after the GP ran a quick urinalysis and blood sugar test, he confirmed my worst fears. He sent us off to the lab for a battery of more blood tests. We were told to report to Korle Bu Children’s Unit to see the pediatrician in charge.

Dr. Renner is a very busy woman who took the time out of her hectic schedule to see us. She looked Alexandra over, read the referral note from the GP and the urine and blood test results, and then had an aide take Alex up to the ward for a weight check (19 kilos or 41.8 lbs – she weighed the same a year earlier!). While they went to do that, she told me to grab my bag and come with her, and she’d show us where we’d be staying. GULP! I don’t know what I expected to hear, but an overnight stay wasn’t it.

We went up to the ward, and I was introduced to the matron, Auntie Mary. The doctor told her that Alexandra and I should be given a bed in the “amenity” ward, which is separate from the regular “charity” ward. We were lucky enough to get our pick of the beds, since there were 2 doubles, a single and a crib, all separated by heavy blue damask curtains with the words “Donated by Angel Trust” embroidered in the middle of them. We opted for the double bed by the window so we could look out of our cell, um room, window.

We were also lucky enough to have our own locked toilet, at the other end of the ward, though. Unfortunately, that area of the building didn’t have running water, so you had to fill a bucket from the shower, and then dump it to flush. The first day, Alexandra and I must have visited that toilet at least two dozen times. I am sure that the other patients and their mommys were very surprised to see an obroni on the floor (one who wasn’t a visiting doctor), but someone just like them – a mommy taking care of her very sick child.

And that is exactly what I was, a mommy helping to take care of her very sick child. Alexandra was put on a saline drip to try to flush out the sugar that had built up in her body – her ketones were very high, and this was the only way to that. The doctor didn’t come right out and say it (that’s their way, unfortunately, and I’m forced to dig and press for answers), but I’ve since discovered that Alex had ketoacidosis, hence the drip in her hand for 36 hours. She was not happy about having this “thing” stuck in her hand, but we didn’t have any option. On the other hand, she thought it was “fun” that she could now take a leak in a bedpan. I, however, did not find that “fun” since her aim is awful, and it was my responsibility to mop up her mess, fortunately there was a sink and a mop in the room for that very purpose. The “amenity” part, I guess.

So, once Alex and I were settled into our room, and she hooked up to the drip, it was total boredom from there, at least for us. I did have my laptop with me, and the Wizard of Oz is on my hard drive, so Alex watched that to pass the time.

In the interim, poor Sly was running around like a chicken without a head. Hospitals (at least, this one in particular), do not have the luxury of a dispensary, and any drugs needed for treatment must be purchased, in advance, by the patient’s representative. So, off Sly went to the 24-hour pharmacy for the first of many many trips – insulin, saline drip, a glucose meter and strips were the first run.

As soon as he brought them, Sly had to rush home to get the things we needed for our sleepover – he still had to pick up the kids from school, so it was urgent to get home, pack, get back to the hospital and get back to Tema by 4:00 pm to get the boys (who were going to be very upset to hear that we were in the hospital). Pillows, pajamas, undies, clothes, slippers, laptop adapters, phone chargers, tooth brush/paste, soap, shampoo, towels… you name it, we needed it. This is not a luxury hotel.

While he was gone, the nurse came in and gave Alex the first of what will likely be more than 50,000 insulin shots over the course of her life time. I hope that Alex gets to live a good long life, and hope that in her lifetime there will be a cure for this horrible disease. It took all of my willpower not to break down and cry in front of Alexandra, but my heart was breaking.

Sly finally got back about 3:00 pm with two Hefty sized bags worth of stuff. He needed our driver to help him carry the stuff up, and poor Ekow, our driver, was really upset to see Alex lying in bed attached to an IV. This is not the Alex he knows, who fights to sit in the front passenger seat, and bangs on his car intentionally every day as she departs, and calls him Brother Ekow. No, this was not that Alex.

Unfortunately, Sly had to leave almost as soon as he arrived to get back and pick up the boys, and we were left alone for our first night in the hospital.

Stay tuned!

P.S… Just ignore the “Debt Diva” moniker… it pays for Alexandra’s blood sugar test strips!