A complicated story which I can best tell from the simple perspective of taking care of the patients is the need for MSF to obtain the right drugs in the right quantities at the right time. It is an important struggle being waged by many in MSF at levels far beyond this little village.
One of the key medications in treating sleeping sickness is called nifurtimox, and we ruptured in this medication yesterday. We knew the day would come when we would run out of this medication, but it did not make it easier.
Two months ago we realized our stock of nifurtimox had a limited shelf life of only until the last day of October. And as a result, we decided to stop prescribing it on October 21. This would ensure none of our patients would receive any expired medication, when it expired on October 31, since once we start a patient on treatment they need it for 10 days. But that also meant we needed to use up our remaining stock so this valuable medication which reduces the number of painful intravenous eflornithine infusions from 48 to 14 was not left to expire without use. So we put as many patients as we could on this approved combination chemotherapy of both eflornithine and nifurtimox, balancing trying to use up our stock before it expires, and also trying to reserve it for children who are difficult to find veins on to start intravenous lines.
Hortence is one of many patients who will be impacted by our nifurtimox rupture. It is a sad story in her case since she needed just 1 more pill. Really. Just 1 more pill.
Hortence is a 10 year old girl from a village about 25 kilometers from Maitikoulou. She presented to us with advanced stage 2 sleeping sickness 10 days ago. Her sleeping sickness had entered her brain and central nervous system. Although her mother says Hortence was treated for a milder form of the disease in April 2009, we initially could not find her in our computer records. Eventually, we figured out that a different name was probably given to us during Hortence’s previous treatment, and confirmed her mother’s insistence that Hortence had been treated by us for sleeping sickness.
When Hortence arrived this time, she could not walk and she could not talk. The out-patient staff brought this to the attention of our American expatriate nurse, and we again performed Hortence’s lab tests, including a spinal tap. Hortence had a very high white blood cell count in her cerebrospinal fluid, and tested negative for meningitis, indicating to us that she had the more advanced form of sleeping sickness.
Hortence has done great. But she's not cured. After the past 9 days of treatment with intravenous eflornithine twice a day and oral nifurtimox three times a day, Hortence has made a very good recovery. This morning I watched her walk. She took slow, steady steps, but was able to do it. She is also talking a lot more than before. Her family is happy with the progress, and the medical team is as well.
But we ran out of nifurtimox. And Hortence needed just 1 pill. She needed half a pill last night and half a pill this morning, and then she could go home and follow up with us. No more needles, no more painful intravenous treatments ₋ that was the plan. I can't conscionably cut her - or any patient's chemotherapy short - even if it is one pill. The implications of failing to properly treat this fatal disease are just too great. Heaven forbid, if we don't treat patients precisely according to protocol, they could develop sleeping sickness and die, or develop the disease and need to be treated with one of our second-line drugs, melarsoprol. This latter treatment, melarsoprol, is known to have horrific side effects and kill many patients. So you can see how nit-picky we have to be that every patient precisely undergoes an approved therapy. No exceptions.
It came to my attention on a Saturday afternoon that we had a nifurtimox rupture because the nurses’ aides could not find any nifurtimox to give the 11 patients we had who were receiving this medication. I was surprised to hear the pharmacist had "forgotten" to distribute this medication and opened the pharmacy myself to see what was going on, long after our staff had left. And indeed, there was no nifurtimox on the shelves. OK, next step – got to talk to Simon our logistician-team leader and ask him to do what we rarely do now, which is open the medical stock to get more of this medication. But Simon confirmed my fear – he had given out the last two bottles of nifurtimox over a week ago. He said we were totally ruptured. Darn. I thought to myself ₋ what are we supposed to do with those patients already under treatment? The answer. Treat them all over again with just the intravenous medication eflornithine, but this time, use the approved protocol reserved for monotherapy of eflornithine.
So we are now retreating 11 patients who could have gone home after just 14 intravenous infusions, but now need 48 infusions of eflornithine over 14 additional days. No matter how hard we try, it will hurt their arms, they will suffer side effects, many will need more than a few painful needle pokes. It is one thing for an adult to go through this, but for the 1 year old child and the other 4 year old child on the ward, it will be especially hard.
MSF’s Campaign for Access to Essential Medications has published online documents detailing the history and future of our struggle to get medications like eflornithine and nifurtimox to the field. Further, at the capital and international levels in this mission to CAR, I know the medical, logistical and humanitarian affairs teams at MSF are working hard to get more nifurtimox for Maitikoulou. I know, because I push them. I tell them what I tell you ₋ that life will be hard for our patients receiving 48 eflornithine infusions rather than just 14 eflornithine infusions when we are able to combine it with 10 days of oral nifurtimox.
For now, there is no nifurtimox available in the Central African Republic, to treat this rare and neglected disease. We will administer instead these painful eflornithine infusions with a number of side effects and complications, always knowing there is something better and easier out there. I will push MSF, and MSF will push others including governments, drug companies and international health agencies to put the drugs in our hands. If we succeed in this goal, 10 year old girls like Hortence can go home to their villages faster and easier, which is where they belong.
Warm wishes from the Central African Republic,