HealthCare Reform: Diabetics Must Be Advocates! A Touching Story from Across the Ocean. Diabetes Knows No Boundaries.

Marioleogannehaiti 3

This happens to be a longer post than usual for my site. Please take the time to read and digest this one.

I have a dear friend that has traveled frequently to Haiti to volunteer his time and efforts helping others. He sends letters updating those of us in the States about his experiences. I did not expect diabetes to be a topic mentioned. Read about Mario and his life with diabetes.

It is lovely, reminds those of is with supplies to live our best life possible, encourages others to advocate for health policy reform and let others know they are not alone in this global epidemic of diabetes and expense. For any of us that live with a chronic illness, please remember to live life with grace and most of all, “Don’t Worry. Be Happy”.

“‘THANKS A LOT,” REMEMBERING MARIO. “

I begin this remembrance of Mario Guerrier with an excerpt from my last letter. I wrote about my trip to Matthieu, where Mario lived, to observe a mobile clinic team that was staying at the Hopital Sainte Croix (“HSC”) Guesthouse. Mario was the translator in the pharmacy of the mobile clinic.  Matthieu was a good reminder of his unique pharmacy translator skills: “Many of the mobile clinic patients receive a prescription from the mobile clinic doctor and then go to the last stop in their visit – the pharmacy.  Before they come to Leogane, many of the medical teams request that Mario be a member of the translators group so he can work the mobile pharmacy each day.  As a patient arrives at the mobile pharmacy site, the American pharmacist reads the prescription from the doctor and hopefully finds the necessary medication among the drugs the team brought to Haiti.  Then the pharmacist confers with Mario to go over the instructions he needs to give to the patient.

Having watched him in action at several mobile clinics, I think Mario is so effective at making sure the pills, ointments, inhalers, etc. are used properly because he brings into play a combination of Marcus Welby (and definitely not House), your favorite uncle, and the wisest 50 year old in your neighborhood.  After Mario talks to you, while looking over his reading glasses and waging a finger at the medicine bottle, I can’t imagine you would forget that the two pills you need to take each day cannot be swallowed at the same time, but rather one must be taken in the morning, the other in the evening.

I was fortunate to spend about three hours, over two days, visiting with Mario at Hospital Sainte Croix (“HSC”) during a three day visit to Leogane in early September 2013.  I learned of Mario’s death the day he died in October 2013.  I was enriched by knowing Mario.  He was a dear friend.

MARIO SAVES MY BACON BUT TWO DAYS AFTER WE FIRST MEET

Saturday, April 1, 2011, was the first time I visited with Mario.   As I’ve already mentioned, he was one of the mobile clinic translators, so I already had said “Hello” to him the previous day when he was at HSC getting ready to go to a mobile clinic site with a group of nurses and nursing students from Boston College’s Cornell School of Nursing.

I first arrived in Leogane on Thursday, March 30, 2011, so that I could shadow Bob and Robin Sloane, who were three days away from finishing a three months stint as the volunteer HSC Guesthouse managers. Bob and Robin would return for January through March stints in 2012 and 2013.  They have been the real volunteer Guesthouse Managers since HSC reopened around September 2010.  I was an incompetent neophyte back in 2011; somewhat better now.

My Saturday chat with Mario didn’t last long, but probably enough for Mario to observe that I was a Bambi in headlights.  He knew that when Bob and Robin left for the airport on Monday, I was in big trouble and so was the new mobile clinic team that had arrived the same day as my first meeting with Mario.  This was the incoming group’s first trip to Leoagne.  After Saturday, I at least had a name, and his cell number was on the Guesthouse Digicel cell phone directory.

Bob and Robin left for the Port-au-Prince about 7:30 a.m. on Monday.  Not much later I got the news.  I think it was Mario who came up to my office and told me that the village the new clinic team thought it was working at that day had no idea the group was coming.  The village health official, the agent santé, told Mario there was no reason for the clinic team to come there.  Yikes !

I “deputized” Mario on the spot in my office, telling him that for X U.S. Dollars I wanted to hire him as my “special consultant.”  Then I calmly asked, well actually in a panicked voice said:  “Mario, I really need your help.  Can you find us a new mobile clinic site.”

Within one hour, he had set up a new clinic site and arranged for the agent santé to have already started walking through the village with a megaphone to publicize the expected arrival of the mobile clinic team. When I paid him, I said “Thank you Mario.”  He replied, “Don’t worry, be happy.”  Though I still owed him my gratitude, I couldn’t help myself.  I told him I really disliked that expression.  He smiled and left.  He got me through Day One.

After that day, Mario would make a point of saying, with his unique grin and laugh, “Don’t worry, be happy”, just about every time we met off and on over five months in 2011 and 2012. He made a point of saying it last September.  He never said he knew that I disliked it, and I never mentioned my dislike again in September, so as not to encourage him.

ROCK N’ROLL TRIVIA BUFF

Over the course of three months in 2011, Mario and I would visit for an hour or so each week, usually on the weekends.  I think I was playing Bitches Brew by Miles Davis when he walked into the office early into my HSC – GH stint.

Thus began a rolling conversation about R & B and Rock N’ Roll – more the latter – that continued over the course of my five months in Leogane during 2011 and 2012.  There were many rock trivia challenges of “who sang ____” or “who first recorded ____.”

We of course shared thoughts about our favorite Rock N’ Rock bands.  We discussed at length why I thought the Stones were a “night-club type Rock N’ Rock band”, but not The Beatles.  You couldn’t dance to too many of The Beatles’ cuts.  But they were really, really, good.  We both loved Led Zeppelin.  I was impressed that who knew about Sam and Dave.  I don’t think he really had heard of Joe & Eddie/Children Go.

His vast rock knowledge was explained somewhat when I learned that he had lived in the United States for several years.  His brother currently lives in New York City. Mario’s music knowledge was but one of his ties to and ongoing interest in the United States after he returned to Haiti.  He knew boat loads about American politics.  He wasn’t hesitant to offer his opinions about U.S. Presidents going as far back as Kennedy. And, Congress.  He also would offer thoughts from time to time about American influences in Haiti. It is no surprise to me that earlier this week one of his American friends commented that Mario was one of the most worldly people she had ever met in Haiti.

NEGOTIATOR

Before each of my volunteer stints in Leogane, friends at my church have given me modest amounts of cash and asked that it be used for a good purpose.  During both stints, I told Mario that I had less than a hundred dollars to give to someone in need at the hospital.  Three or four times during my stays here, Mario found needy families to help. As I mentioned in a previous Note, Hopital Sainte Croix, operated by the Episcopal Diocese of Haiti, serves a very important role of delivering low cost out-patient and in-hospital care in the Leogane Communale.

I remember one time in 2012 like it was yesterday.  I ran into Mario in the hospital Lobby. I was waiting to see the Medical Director.  He told me a patient was being discharged, but couldn’t pay any of the bill.  I asked, “How much do they owe.” He replied, “ X dollars in U.S. currency, but let me try to negotiate a lower amount.”  I was not privy to any of the next thirty minutes of negotiations.  I just watched him walk here and there on the first floor. The pay-off he negotiated for this young couple would have made an American mediator or lawyer proud.

What I appreciated about Mario was that he never tried to push for more money than I had said was available.  We all know people in the States and Haiti who wouldn’t have such class in the same situation.  But another example of how Mario ran with what he was given, the hand he was dealt, with good humor.

I’m not saying Mario hasn’t asked people to bring him this or that when they would next being coming Leogane.  But in my experience, his requests were reasonable, coming from a friend.  Though several U.S. friends helped with his buying insulin, my experience was that he didn’t ask for this help. It was unilaterally volunteered to him – but with a promise that he would use it just for that.

MARIO HAD DIABETES

This Note is about Mario; about some of the things that endeared him to so many.  But, I don’t think my friend would mind too much if I used the time here to discuss a bit about diabetes in Haiti; a disease Mario lived with for quite some time.

While drafting this Note, I came across a sobering November 14, 2013 New York Times Op-Ed piece,  written by Drs. Palav Babaria and Aisling O’Riordan:

“A HAITIAN BOY’S NEEDLESS DEATH FROM DIABETES

JEAN-PAUL was 12 when he died.  A diabetic, he might well have lived if not for a tragically simple problem, common in rural Haiti: the glucose test strips available did not match the only glucometer we had access to in our rudimentary district hospital.

We are doctors -  one  American, one Irish – who worked as volunteers at the town hospital in Haiti’s desperately poor central plateau last spring.  On the storm-drenched night that Jean-Paul arrived at the emergency room, we rushed to him through corridors clattering as if glass were breaking, as rain pelted down and leaked through the tin roof, forming puddles and muddy rivulets on the floor.

Jean-Paul was lying on a gurney.  He looked much younger than 12, his growth stunted by Type 1 diabetes and malnutrition.  He was unconscious and breathing in grunts.  His sticklike wrists barely had a pulse.

In any emergency room in the United States, doctors would have immediately inserted a breathing tube in his throat, resuscitated him and admitted him to intensive care.  In rural Haiti, we had no such options.

His father, gripping the gurney, told us Jean-Paul had been sick for a few days; he hadn’t known Jean-Paul’s infection could drive his sugars dangerously high; if he’d had a glucometer, as most American diabetics do, he could have seen it for himself.  The small devices measure blood sugar by reading a drop of blood on a test strip.

But while the local health center had a glucometer, it was out of test strips.  And our district hospital didn’t have enough glucometers to give one to every patient.  In any event, Jean-Paul’s family waited to make the expensive and time-consuming trip to our hospital, hoping their son’s illness would pass.  They waited until he was so sick that they had no choice.

Jean-Paul’s first blood sugar sample was too high to be read on a glucometer.  He was already in diabetic ketoacidosis – a life-threatening complication of diabetes.  The initial steps for treating it are simple: fluid and insulin.  We injected him with insulin and flooded him with liter after liter of fluids, trying to pump life back into him.

American hospital protocols for diabetic ketoacidosis recommend conducting lab tests every two hours, monitoring sugars hourly and readjusting the insulin drips accordingly.  Our lab lacked any of the tests usually used to monitor ketoacidosis.  We had to make do with our 10 remaining glucose test strips, rationing them by calculating how many hours apart we could space our checks.  If we used them all that night, what would we do the next day ?

We examined him and re-examined him, monitoring his ragged breath and racing heart.  But it was too late; Jean-Paul was beyond saving before he even reached us.

Today is World Diabetes Day, and we cannot help but remember his needless loss.  Every day in Haiti, we encountered the problem that killed him: Manufacturers of glucometers would give them away like free candy (bold emphasis added), and sometimes a half dozen would be scattered across the hospital.  But they were useless because the test strips were always out of stock.

Glucose strips are a major source of the profit derived from diabetes testing supplies. Conglomerates like Roche, leader of the $8 million a year diabetes testing industry, have made these strips proprietary – in others words, each strip fits only into a specific machine.  While glucose test strips cost pennies to make, the branded strips sell for 50 cents to one dollar per strip, and diabetics who depend on insulin typically use several strips per day.

In Haiti, we would sometimes deplete an entire box of 50 glucose strips on a single sick patient who required frequent monitoring.  This precious box was often ordered months in advance; it took up to six months for the order to go from the district to Port-au-Prince, Haiti’s capital, and on to the United States, and then for the shipment to arrive in Haiti, clear customs and be transported from a central depot to a peripheral one and finally to our hospital.  When a box ran out, we rarely knew when the next would arrive.  And by that time, manufacturers might have changed their models, and stopped manufacturing strips for the glucometers we had.

For sites like ours, which rely on donated supplies, ensuring that glucometers and test strips are from the same model and manufacturer has been virtually impossible.  That mismatch is often the missing lifeline for patients like Jean-Paul.

The solution is simple, and one that many diabetics have been urging for decades: Create universal test strips that will work in any available machine, the same manner that USB cables can link nearly all brands of computers and devices.  Universal test strips would lead to cheaper strips and increased availability.  This would ensure that diabetic patients in places like rural Haiti could monitor their blood sugars, and local clinics and hospitals could effectively screen for, diagnose and treat diabetes.  Patients like Jean-Paul would know their sugars were too high because of an infection, and come in to the hospital before it was too late.

Instead, we watched as nurses disconnected Jean-Paul from the intravenous tubing that night and carefully pulled a sheet over him so his father could carry his body out of the hospital.

Palav Babaria is a primary care doctor at Highland Hospital in Oakland, Calif.  Aisling O’Riordan is a doctor in Dublin”

Though Mario’s diabetes management situation was far better than that of twelve-year Jean-Paul, it was far from what most of his fellow diabetes veterans experience in the U.S.  I know his use of a glucometer was most uneven.  I suspect he went weeks or months without blood sugar tests.  Thanks to help from time to time from friends on various mobile client teams and others,  he had some access to insulin.  But  I suspect, without knowing the specific frequency and dosage, I know that Mario’s insulin use was far removed from that of an  American with decent health insurance.

Those who knew him well were concerned by Mario’s tendency at times to live his life in a way that was less than ideal for a diabetic.  Let’s face it, sometimes he drank too much.  He’s not the only one.  I cannot sit here and judge Mario’s health management decisions.  I have the luxury of living in a country that offers – well at least for a majority of its citizens – reasonably insured medical care.

There were times Mario and I met at Joe’s Bar in the Belval neighborhood of Leogane for the next rock trivia war or just to discuss stuff.   We’d have a few beers.  I guess we may have helped each other to steal a few “health dimes or quarters” from ourselves; at least in the view of one Haitian proverb: Lasante se pi gwo riches. ( Health is the greatest wealth).

THANKS A LOT

During the last few I days, I’ve had the opportunity to speak or correspond with the team leaders of the first two teams I met at the Guesthouse after my arrival at on March 30 into the first week of April 2011. In spoke at length about our mutual friend with a nurse from the group that finished their last mobile clinic on March 31st. I think I’m fairly distilling some, but by all means not all, of our conversation about   Mario. He was

kind    gentle    urbane    funny    witty    he had a good heart

Just today, the team leader and other members of the “saved my bacon” group learned from me that Mario had died in October.  The emails flew in from Massachusetts. They included these tributes:

“Mario almost always saved the day.  What a wonderful, warm and vibrant man ! He was always willing to help us in any way he could.  We will miss his presence and humor on this [upcoming] mission.”

I also learned from one of these emails why Mario was so quick to find a replacement mobile clinic site on Monday, April 3rd:

“That first day of our first mission, he sent us to a village near Matthieu, his home town.  We worked in a destroyed school with a front door, but no walls or roof.  We’ve gone to Matthieu every year since. *  *  *  We will all miss Mario, may he rest in peace, and rise in glory.”

Mario, my special consultant, how resourceful. You sly fox.

In photos that accompany this Note, you’ll always see Mario in a “B” Red Sox hat.  An apparent badge of loyalty, as revealed by the background provided by another member of this group:

“[H]e treasured his Boston links back to camp in NH thanks to the Episcopal nuns.”

And this from another in the group:

“Mario was such a gentle, smart man who was known and respected by everyone.  I loved working with him and watching the care and respect with which he delivered everyone’s prescriptions.”

I’m so happy my wife, Jeanne, was able to visit several times with Mario during her week long visits to Leogane in mid-May 2001 and late May 2012.  He became Jeanne’s friend.  That happened to a lot of us.

When I gave something to Mario I brought from the States, or did what he considered a favor for him,  his response of appreciation he would include, “Thanks a lot.”  Without exception.  A few times I floated him a loan, as did others, around $25 or so until he could pay it back after he sold some of his coffee and rum to mobile clinic team members.  “Thanks a lot” followed the exchange.  I’m confident in saying that “thanks a lot” is a Mario mantra that everyone who befriended him heard time and time again.

Now Mario, it’s time for me to say, “Thanks a lot.”

During my now almost six months of living off and on in Haiti I have met a number of Haitians who have  taught me valuable life lessons.  An important lesson I learned from Mario: “Don’t worry, be happy.”

I hope this Note finds you and your loved ones in good health and spirits.

Cheers,

David

 

 

 

 

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