Four members of the team went to three pharmacies today to interview them about their experience with sickle cell disease. Even when we introduced ourselves and informed them that we were partners with World Hope, the pharmacists were still hesitant to answer our questions. The first pharmacist said he didn’t speak English but we were able to learn some information from the second two. When we asked the first pharmacist if she knew what sickle cell was, she shook her head no. She did say, however, that she has people come in with bone pain and she gave them naproxen or prednisone. Naproxen is sold under the drug name Aleve in the United States and is commonly used to treat pain and prednisone is a steroid. Neither is used to treat sickle cell in the United States. There have been studies that show that corticosteroids can help with sickle cell pain episodes. Although, taking these regularly can increase the amount of chest pain and increase the risk of hemorrhagic stroke, potentially dangerous to be prescribed – especially for sickle cell patients. An interesting thing we found in our research of these drugs administered for sickle cell treatment is that prednisone is used to treat high levels of calcium. Both prednisone and calcium are given to patients with bone pain, which seems counterintuitive to treat someone with a drug that lowers the level of a mineral that is also given for the treatment of the disorder.
The other two members of the team (Alice and Lauryn) visited three health care units (HCUs) while the others were at the pharmacy. The first one we visited was Makama, a clinic that focuses on maternal health including antenatal and postnatal care. We spoke to Mariama Jalloh, a midwife, and had a conversation about sickle cell disease and its prevalence. She told us that people come in complaining about bone and joint pain to the clinic but they are unable to diagnose or treat it. These individuals are referred to general hospitals for further care. We also wanted to learn more about the under-5 care they provided and discovered that they do postnatal days every Friday. This is useful to our venture as we hope to catch sickle cell disease quickly after birth. It would be a great opportunity to return on a Friday and see how the clinic functions during these days.
The next clinic we visited was Stocco, a facility that focused on more severe diseases such as tuberculosis, HIV/AIDS, COVID-19, and other ailments. We met with the head doctor and asked the same set of questions as the last HCU. His replies were similar to Mariama. He noted that most of the patients that came in for bone pain were above the age of 18. However, most patients at the clinic were older. When we asked about his interest in our device after production, he believed it would be a great asset to the clinic.
The last clinic we visited in the morning was a primary health unit just down the street from Stocco. We talked to one of the primary nurses at the facility. Similar to the previous two clinics, we asked a set of questions but the replies we received were slightly different, yet still insightful. We learned that the facility does know of sickle cell disease, but they refer patients that come in for bone pain to general hospitals. However, they look at family history to know what kind of medicine should and should not be given to patients with suspected sickle cell. They said it was not recommended to give ferrous (iron) to individuals with sickle cell disease, but folic acid was okay. About 1 in every 100 individuals at this clinic comes in with bone pain and these individuals were mainly teenagers. Similar to the last clinic, she was also interested in implementing the device if it was affordable. One thing we noticed at all three health clinics was that there would be infographics posted on the outside of the facilities. We think it would be beneficial to us if we created one in the future that highlighted the importance of testing and the possible treatments for the disease.
In the afternoon, we visited Gladys Koroma Hospital which is connected with a university. We first talked to the Head of the College of Tropical Medicine, Doctor A. S. Kallay. When we asked about sickle cell, Dr. Kallay immediately started talking about the two most prominent diseases in Sierra Leone: typhoid and malaria. He emphasized that these illnesses are so common because of the poor water drainage system and poverty. These factors can make an infected individual more susceptible to a host of other diseases. The most important thing we got from our conversation with Dr. Kallay is the amount of respect that doctors and other modern healthcare workers have for traditional medicine. He compared the mango leaf treatment that traditional healers use to the pills that modern doctors prescribe because the doctors use the same leaves to create the capsule. Modern medicine has its roots in traditional, or herbal, medicine. By using science and technology, the storage life or administration of medicine can be improved to be more efficient.
After talking to Doctor Kallay, we met a group of medical students taught by him at his college. They all confirmed that they were not taught about sickle cell but were all aware of what it was. They had the same misconception about the disease that the student in the nursing class had, which is that the bone marrow gets emptied of blood and the drying of the bone marrow is the physiological effect of the disease. Another interesting misconception they held was that infants do not have sickle cell and you develop it around age 15. The students most likely think this was because a baby who dies from the sickle cell isn’t able to verbalize their pain and therefore the cause of death is unknown. Those who survive might not experience the pain crisis until they are older, which is when they would go seek a doctor. Most people with bone pain don’t ever go to a doctor because the doctor won’t be able to cure it and they don’t want to pay if their symptoms aren’t going to be eradicated. The students told us about a 9-year-old boy who has it and has gone to the doctor twice (which to them was a lot of times to see a doctor for this illness) and still is just as sick as before. This emphasizes their point that the doctor is useless for sickle cell treatment. Even though they believe people develop the disease as they get older, they know that the disease is inherited. However, a common belief is that as soon as an affected mother has a baby, she transfers sickle cell to her child and no longer has it herself. The students also think if a person with sickle cell lives to 25, they will not die from the disease and no longer need to worry about it. This has been a trend with everyone we’ve talked to, those in the medical field and those not. There seems to be a lot of misinformation about sickle cell disease even among students, doctors, nurses, and technicians.
