Monday, September 21 – The beginning of a new week….

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Despite the fact that I was still battling my nuisance URI from last week, I’ll have to admit that I felt rather rested from my day of R&R yesterday which was the first in a very, very long time here at FAME.  It was the beginning of a new week and we would be heading off to the Rift Valley Children’s Village tomorrow and the day after. I had worked with Dr. Ken last week and this week would be working with Dr. Adam, who I had only just met, but had a great feeling about him as being someone who was looking forward to working with us. Unfortunately, Dr. Anne, who I have worked with closely over many years and was scheduled to work with me for the entire time this trip, fractured her ankle just before I arrived and will be out of commission. It was a significant disappointment for everyone as she has been training as the primary neurology caregiver here at FAME in between my visits and she will be greatly missed during these next weeks. I have no doubt, though, that she will pick right up where she left off when she returns. Dr. Anne had also been scheduled to come to the University of Pennsylvania last May to do rotations in neurology and ob/gyn, but those plans had obviously been sidetracked by the pandemic and will have to wait for another time in the future.

One of my patients

One of our first patients of the day was a gentleman with fairly advanced Parkinson’s disease who was only in his mid 50s and who has already been on carbidopa/levodopa for several years to treat his symptoms. He had been doing fairly well on the regimen of medication that we had him on, but unfortunately, he was often filling his medication at the local duka la dawa, or pharmacy, where they would give him a different formulation of the medication and we not making the conversion between the two correctly. He had been under dosed based on what we had given him previously and he and his family recognized that he had been doing better prior to switching. All it really took was switching him back over to the formulation we had originally put him on and convincing the family, who did not live that far from FAME, to come back here for their refills. When I entered his prescription into the new EMR, though, it calculated out the cost of the medication, which, at the doses he was taking, was extremely costly and something that would be difficult for most families in this community to afford.

One of my patients and his wife

This is a common theme, the inability for patients and families to afford their medications, that we find in very many of our patients who may have been on a medication that was working well, but they either discontinued it or decreased it because of the cost. Though we subsidize the cost of the neurology clinic itself which means that we include the patient’s evaluation, one month of medication and any laboratory testing that may be required in the price of a single visit, we are unable at this time to completely cover the cost of medication when they return for refills. As you can certainly imagine, making a great diagnosis and placing the patient on a medication that effectively treats the problem at hand and then having the patient discontinue the medication due to cost, if not a very effective way to deliver health care. We have been continually looking for ways that we might be able to completely fund the cost of medication or, at the very least, develop a sliding scale payment system that could be determined by assessing the family’s ability to pay for the medication, something that could easily be undertaken by our social workers, Kitashu and Angel.

One of my young patients

Another patient this morning, who had traveled from Arusha to see us, had a very similar issue. Their antiepileptic medication (sodium valproate), which had been working extremely well for them and they were seizure free, was very expensive at the dose required for the patient as it mostly weight based since we are unable to check drug levels here. The monthly cost for their medication at the necessary dose would be 150,000 TSh, or approximately $66 USD, an amount that would be very difficult for most families in Northern Tanzania where annual incomes may be $250 or less. How to structure a program that will also include funding for these necessary medications is the real challenge confronting us today.

One of my long term patients

Despite these challenges, though, we have managed to follow many patients on a regular basis who are doing extremely well with their neurologic illnesses, and many of those include our epileptic patients, who are perhaps the most vulnerable population when it comes to needing their medications to prevent their seizures. For a patient with epilepsy who is well-controlled on a stable dose of their antiepileptic medication, reducing the dose or stopping the medication altogether most often will have very dire consequences in regard to recurrent seizures and risk of injury such as severe burns that I’ve spoken about before.

One of last patients of the day, was a young man with a chronic static encephalopathy and epilepsy who I have cared for over many years with reasonable, though not perfect, control of his seizures. He is severely disabled from his CSE and unable to provide any of his own care, but his parents bring him to see me every six months quite religiously. I remains very comforting to know that you’ve has some impact on patient’s care here and provided some improvement in a family’s quality of life even if that may just be a small amount.

 

 

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