As it was Alicia’s last full day at FAME after her 2 month stint here as part of her global OB/Gyn fellowship program with Creighton University, she was giving this morning’s education session that was to more of a practical, hands on exercise in how to read fetal monitoring strips. I certainly planned to attend as I feel compelled to do so as a board member for FAME and wanting to support the other volunteers regardless of their expertise, though I did tell the residents that given the fact they would never really be looking at fetal monitoring strips in their career, they were welcome to get an extra ½ hour of sleep for the morning.
I did find the lecture interesting, as I do any medical lecture to be honest, but when it came to the practical portion of the teaching session, I decided to sit back and take photos instead. The residents had arrived before Alicia distributed the strips to be read and, so, they gladly joined forces with the FAME doctors to weigh in on their interpretation of the strips and they each participated with one of the several teams. The take home message for me was how to report the information from the strips (which I will never have the chance to use) and that obtaining monitoring strips in an otherwise normal pregnancy only serves to increase the number of caesarian sections and does not improve outcome at all. Meanwhile, the other take home message I got was that Dr. Anne really knows her obstetrics as she was answering all the questions from the quiz correctly and, eventually, had be to asked not to answer any further questions and to give some of the others an opportunity. If I were here having a baby being delivered, I would certainly be asking for her. Somehow, though all of this, I couldn’t help comparing the two channels of these strips to the tremendously more that we read on an EEG at one time. Then again, it’s all a matter of one’s perspective.
We went to see our little seizing baby again who was still in the ward and the child, though having had some recent seizures this morning, was bright and alert and acting normally. At the end of the visit, though, he preceded to have another seizure that was very typical of what we had seen in the past – the baby began to stare blankly without response and stiffened it’s arms and legs with some very subtle jerking movements of its face, mouth and eye in a rather rhythmic in nature including his tongue. This lasted less than a minute and stopped. We had started the topiramate over the weekend and I decided to try increasing the topiramate as I was reluctant to put him back on phenobarbital given the three other medications we already had him on. We crossed our fingers and doubled the topiramate as it was at a very low dose currently. We would check back later in the afternoon/evening to see how things were going.
FAME has always depended on its volunteer program which is how I was first introduced – having visited here in 2009 while on safari with my children, and having had neurology cases run by me by Dr. Frank and Dr. Mshana, I was asked if I could come back sometime. Here I am 13 years and 26 trips later, now having a full neurology program here with residents volunteering as part of their training and the benefits of this philosophy have become crystal clear to me and every other volunteer who has visited since its inception in 2008.
FAME’s mission is not to develop a patient centered healthcare facility that is dependent on Western volunteers for the care of its patients, but rather, quite the opposite. FAME is fully staffed and run by an all Tanzanian staff comprised of doctors, clinical officers, nurses, lab techs, radiology techs, housekeepers, groundskeepers, drivers, kitchen staff, administrators, and many others who, on a daily basis, keep FAME running seamlessly. This was no more evident during the pandemic of the last several years when there were essentially no volunteers here other than myself, and later some of my neurology residents, and yet FAME continued to function, providing the same high quality healthcare that it has been known for since opening back in 2008.
Volunteers coming to FAME and working side by side with the Tanzanian staff have the opportunity to participate in a unique bidirectional educational process that provides not only a tremendous benefit to the population of Tanzania, but also cannot fail to leave a lasting effect and incredibly valuable impression on those volunteers that will stay with them for the rest of their career and make them not only better doctors for their patients, but better human beings. For the residents who I have brought here over the past decade, their experiences have been only uniformly positive and, for many, life changing.
Our lunch today (always on Tuesday) was comprised of a classic staple here in East Africa, that of ugali and meat with a side of mchicha. Ugali can be best described as a stiff porridge that is somewhere between corn mush and cornbread and is made from either maize or cassava, with that eaten here of the former. It is made in a huge cooking pot that requires constant stirring until it completely sets and is then scooped out with a large spoon onto each plate. On top of this is placed chunks of beef and sauce and then the mchicha. Though many of us eat the ugali with a spoon, it is truly meant to be eaten with your fingers, typically rolling it into a ball that you then put in your mouth along with a piece of beef or vegetables. Most of us also dump the appropriate portion of pili pili on top. For many, this is their favorite lunch here at FAME, though for me, it is still the rice, beans and mchicha. For Charlie, FAME’s resident dog, today is absolutely his favorite lunch, along with Thursday’s Pilau which is also served with beef, as he is the benefactor of all those chunks of meat that are less palatable for those of us who are used to more lean cuts of meat. Though Charlie is by far the biggest benefactor, and I say that both literally and figuratively, Meow does also partake in some lunchtime snacking on these days.
Today, I did have to be back at the house by 5 pm as there was a FAME Board update call scheduled and I would need to be available for this. We now have the luxury of having WiFi available in volunteer houses, as well as throughout the FAME campus, that has made life much more livable for everyone as previously, we would hotspot one of our phones, though it never worked very well. Having a working WiFi, though, is predicated on having power, and that has been on ongoing battle with Tanesco, the power company here in Tanzania. Frequently through the evening, our power will go out briefly, or for longer periods, and when this happens, the router and modem will suddenly kick off and often it will take up to five minutes for the modem to recycle and come back to life.
Thankfully, the power lasted throughout my board update call, but immediately afterward, while on a video call with a close friend in the US, the power cut out and remained out for probably 30 minutes until I was finally able to call back and finish our conversation. These little interruptions in the power are certainly manageable, though in the past we’ve experienced more extensive rolling brown outs that thankfully have not been nearly as common in the recent years. I remember arriving in Arusha to the Temba’s home out of power on my phone and computer and all set to charge everything, only to learn that the power was out for the remainder of the day. Those instances have been far less common in the recent years, thankfully.
Earlier in the day, we were approached about seeing a group of patients from a nearby village that we used to go to for a mobile clinic, though have not been there in several years. The patients all have a neurologic issue and had either been seen by us before or not, but were all appropriate for us to see. There was some question, though regarding how they were going to get to us as even the cost of transportation to FAME can be very prohibitive for many of our patients. There is always a fine line regarding how much assistance is appropriate for us to provide for patients to be seen as the clinic is already heavily subsidized as far as the cost that is paid to be seen by neurology – patients coming to our neurology clinic receive their office visit, any appropriate labs that need to be drawn and a month’s worth of medication, or often several months, all for 5000 TSh, which, at the current conversion rate, is less than $2.25. Providing transportation for some patients and not for others, has always been a dilemma for us when it is on top of the subsidy that is already being provided.
This has been our model from the very beginning of the neurology clinic here and though it has served its purpose in regard to making more patients, and healthcare workers, aware of not only the nature of neurologic illness, but also the fact that they are often very treatable. This model, though, has not come without its logistical issues as there needs to be some very robust social services input into this process regarding patient’s ability to continue the treatment that we’ve recommended. Making a diagnosis of epilepsy in a patient and recommending a medication to a patient confers a lifelong commitment very often to continuing this therapy. Starting a therapy that changes someone’s life by completely controlling their seizures only to have them unable to continue the therapy due to cost provides no long term benefit to the patient or to the community.
These are factors that we have continued to monitor and have also analyzed the cost to provide these therapies to our patients on an annual basis. The good news is that for the vast majority of medications needed for these patients, it is extremely cost efficient in terms of the big picture (we analyzed the annual cost to provide the annual care including medications for the cohort of 405 neurology patients that were seen during our September 2019 visit and it was less than $36,000, magnitudes less than what that would cost in the US), though unfortunately, this will require additional funding dedicated to provide this continued care for this often most vulnerable group of patients. Creating a lasting system capable of the sustainable provision of these services must be our ultimate goal and something for which we will continue to strive.
I finished my evening with a very vigorous discussion on WhatsApp with the FAME Peds Neuro Consult Group – a group comprised of numerous individuals who have been to FAME in the past and who contribute on a regular basis to the care of patients here throughout the year. With the seven time difference (or as someone constantly reminds me, “I am the future”), the late afternoon and evenings are by far the best time for these discussions, and it took no time for me to receive a great deal of help concerning our little seizing baby on the ward. The decision in the end was to put the baby back on phenobarbitone, the medication that we had originally used and had then abandoned in lieu of the levetiracetam and valproic acid, and also continue him on the other current medications he was on. Having the ability to rely on my pediatric colleagues in the US in this manner as well as having them constantly available through the year is a truly a God send and is what makes FAME so remarkable. These loyal resources and the tremendous team of Tanzanian caregivers here on the ground year round are why FAME will continue well into the future.