NOTICE – I want to first reassure all of my readers that every member of the team has arrived safely to the US as of Saturday, March 21, and Sunday, March 22. I would also like to apologize for the delay in posting these blogs, but given the circumstances, it became more difficult to get things written in real time.
When I had first come to work at FAME in 2010, they had been providing a very large mobile clinic to the Lake Eyasi region of Northern Tanzania, a very remote area where the Hadzabe and the Datoga live very isolated lives with little in the way of medical care. It was a very large operation, utilizing Rosa, the all-wheel drive disaster ambulance from Japan, then outfitted to provide room for probably seven passengers and all the gear needed to provide medical care to around 100 patients a day who came from the surrounding areas. Rosa had solar panels on top to provide the necessary electricity for Dr. Joyce to set up a mobile lab, extra batteries to provide emergency power and everything necessary to provide medical and some surgical services in the field. It was essentially the FAME version of a MASH unit.
The mobile clinic was an entire week when we would be away from the main campus, eating and sleeping together in whatever accommodations we could find in the local cinder-block government buildings that were as hot as hell and had no power, but an outside choo (two bricks to stand on and a whole in the ground) and a shower stall in which you could take a bucket shower in privacy. Hot water was a hit or miss phenomenon depending on what time you awoke and, considering the sweltering heat all night long, that was typically well before sunrise and the local woman had not yet had a chance to boil water for us. It was a monthly clinic as long as the weather allowed as flash floods would frequently wash away those regions that had roads or make those that did not impassable. As an adventure, there have been few that exceeded it in my life. They were long, long days, everyone was beat and sleep was not something that required any extra initiative.
Alas, all good things must come to an end and the grant that funded the clinic, from a Dutch non-profit, Malaria No More, was only for three years. The other purpose of the clinic, in addition to providing health care, was to provide education and there were malaria videos shown to the people that came along with information on STDs. Paula Gremely, and her partner, Amir Bakari Mwinjuma, supplied much of the education and non-medical part of the logistics such as how to feed 20+ people that were part of our contingent (we had two or three Land Rovers that also came along). In 2011, Paula and Amir both discussed with me the thought of providing a neurology specific mobile clinic, on a smaller scale, to the surrounding villages around Karatu that could be done in a single day each and would make those patients who had treatable neurological diagnoses, such as epilepsy, aware that they could easily receive medications that would change their lives, and they could also come to FAME, if needed. In April 2011, only my second trip to FAME, Paula and Amir brought me, a clinical officer, a nurse (to act as our pharmacist), and a big box of medications to Kambi ya Simba as our very first neurology mobile clinic.
At the time, there was a tiny dispensary at Kambi ya Simba, a ragtag little town in the Mbulumbulu region of Karatu district and was the closet village after leaving the tarmac at Rhotia to have enough organization to warrant our visit. We borrowed two desks, one for me and one for the pharmacy, set them up in a clearing out in front of a small church nearby, and went to work. We had plenty of patients to be seen and it was difficult to convince them that it wasn’t proper for all of them to stand around my desk while I was taking a history and examining the patient. There are no HIPAA rules here, but over the years, we have worked very hard at FAME to respect every patient’s privacy with the utmost care. I gave my camera to Amir and, even though it was a complicated digital SLR, I told him to just use the zoom to frame the shot and the camera would do the rest. He took hundreds of photos, many of them spectacular, but the one he should with examining a young Down syndrome patient placing his hand on my head while I listened to his heart absolutely won me over as one of my favorite photos from here that has characterized our work.
Unfortunately, after 16 years in Tanzania, Paula had to go home for family reasons and her work ended. I haven’t seen Amir in many years, but I know that he stays in touch with FAME and I will always remember him as one of those people who have the biggest hearts and know how to utilize it constructive. So, after ten years of continuing to provide neurological care at Kambi ya Simba twice a year, we are going back today with a vastly different effort than that very first visit. We now have two vehicles going given the size of our team – three residents, medical student, pediatric neurology nurse practitioner and a fellow CHOP attending, most requiring an interpreter, two drivers given the horrendous road situation with the rain, a nurse to dispense medications and a social worker. While our team has grown over the years, though, Kambi ya Simba has also become a huge collection of medical wards, offices, radiology suite (not sure if their equipment is up and running), labor and delivery and whatever else is necessary to be a showcase government facility. In fact, we were told upon our arrival that members of parliament would be coming today to make some speeches, but that it would not interrupt our clinic for very long.
The road to Kambi ya Simba, and to Mbulumbulu for that matter, range from horrible to impassable, and it all depends on the rains. There is plenty of travel on these roads, from overloaded Land Rovers with people hanging on the sides and sitting on top, to larger trucks and even a bus that plies this route. The land here is incredibly fertile and it is almost exclusively Iraqw who live here with many of the older woman speaking nothing but Iraqw necessitating an extra interpreter for them at times. The road departs from the center Rhotia, heading north along the Great Rift escarpment, which explains its fertile soil as it is mostly volcanic, and you reach Kambi ya Simba in about 45 minutes. The roads today were not the worst I’ve seen, but they were bumpy enough and slippery at times for me not to be wanting to drive on them. I’ve written in the past about slipping off the road on my way to Kambi ya Simba, and it was not a pleasant experience at all. The mud on any these roads (there is only one paved road from Arusha to Karatu so essentially everything is unpaved) will almost instantaneously become as slippery as ice with just a hint of moisture on them and It becomes a challenge just to keep these big vehicles on track and in the right direction. We made it safely with George from FAME driving my vehicle and Julius driving the vehicle I rented from Kudu lodge in Karatu as none of the vehicles from FAME were available for our use this trip, the first time ever, due to a shortage secondary to their vehicles aging out of their useful life and upkeep becoming unmanageable. I had decided to rent a vehicle for our neurology mobile clinic, one of the jewels in our work here.
We left for Kambi ya Simba a little after 8:30 am and probably arrived sometime before 10 am after any errands that needed taking care of. We set up shop in the allotted rooms and managed to get at least three rooms for our work, which was essential as it becomes impractical to see the volume we do without a minimum of three and often four rooms. Everyone got started on their patient with Amisha and Marin initially working together on the pediatric cases. Molly’s very first case of the day happened to be a very, very nice man with a couple year history of weakness of his muscles and the inability to swallow. The important piece of his history is that he was a very, very nice man, for, as neurologists, there is a superstition that only it is only very nice people who develop one of the worst terminal neurological illnesses we have, amyotrophic lateral sclerosis, otherwise known as ALS or Lou Gehrig’s disease, as it affected one of the most amazing baseball players of all time, who, after photographs very likely revealed his early muscle wasting, was still able to play professional baseball with the early stages of this disabling and lethal disease. Of course, there were some pieces of information in our patient’s history that may not have completely fit, but they were less significant parts of the history as it is common here to explain diseases based on events that would have nothing to do with the onset of the disease, such as seeing a snake and developing seizures. The rest of the history, and often that which is most important, is somehow pushed to the background and sometimes very difficult to retrieve when it’s needed.
We had a fair smattering of both adults and children to see here, keeping Marin and Amisha quite happy, and there were both follow up and new patients as well. Though patients seen here are not given FAME charts or medical records number, we keep the list of patients going and organized, always bringing back paperwork from the clinic done six months ago. Many patients requiring refills must come to FAME for those medications as they are not always available at the Duka la Dawa (pharmacy) in Kambi ya Simba. For patients who we have significant concern for in their ability to get to FAME or to be afford the refills, we may be more liberal in writing their script for several months. As I may have mentioned before, Leah Zuroff, our medical student from September (and recently matched at Penn for neurology – congratulations!) extrapolated out the cost to provide an entire cohort of our patients from September (405 patients) with visits twice a year, medications for a year and any labs they might need and came up with a figure of approximately $35,000 for all of the patients, a far cry from what is spent in the US for similar circumstances and where that wouldn’t even cover one patient for a several day stay in the hospital. Things are just so crazy in this world.
About noon, we had several reasonably new vehicles drive up to the clinic with lots of people getting out wearing suits, far different than the normal attire we see on these visits. Then, we heard loud sirens in the distance and a police pick-up truck with yet several more vehicles following including one identical to our Kudu rental Land Cruiser drive up, the police vehicle with a number of uniformed and armed police riding in the back all standing. Out of the other vehicles came individuals who looked very official along with several uniformed and armed military officers getting out as well. Everyone, including the armed personal as well as many of the local residents, finally assembled at the covered entrance to the dispensary where there was a large poster hanging and gave speeches that were impossible for us to hear as we were all gathered with our patients by our examination rooms, having been asked to stop working during their visit.
Following a tour of the facilities, the entire entourage eventually packed back into their vehicles with all of the armed personal and drove off in the direction of the center of town. Once they had left we were again free to finish seeing our patients who had waited patiently for the official visit end just as we had. We did have to squeeze a quick lunch break in, though, as we weren’t able to do it during the visit. Outside of my first to Kambi ya Simba, where we were actually fed lunch by the village, we have always brought our own food, given the size of our team, and it has always been our policy to eat in our vehicles, or at least outside of the view of the patients and family as it would be otherwise impolite for us to eat and not share with them. Bringing enough food for the entire village would obviously be a huge undertaking and not something that we were equipped to do.
We had seen a steady flow of patients throughout the day, some of who were follow ups for us, but the majority were new as has always been the ratio on mobile clinics as well as back at FAME for our general population of patients. We finished with our last patient at a reasonable time and were able to begin our journey back to FAME in the daylight, which is always a significant as it is unsafe to drive at night on these roads due to animals, domestic and otherwise, that may suddenly show up in your path. Susan had asked everyone to come over to her house tonight for a get together prior to everyone’s departure. At the time, Dan and Marin still had intentions of going to Gombe next Sunday to see the chimps, though the impact of Covid-19 was beginning to become more apparent on a daily basis and at that point, we realized that we had to be flexible. We had managed to finish our first mobile clinic of the week, and our goal was to be able to at least finish out our week of clinics as the patients were depending on our visiting them. We also had one new sight that were going to for the very first time.
We all sat on Susan’s lovely deck that evening to watch the sunset and share the time together, but the uncertainty of immediate plans certainly loomed heavily on everyone’s mind. My original plans had been to stay for the FAME Board meeting that had now been cancelled and it was more of a matter of determining just how much of our mission we’d be able to complete without risking not being able to get home.