Day 9: “The devil is inside them”

Today we traveled to three different health clinics: Gbendembu Health Center, Mabunduka Health Center, and Mateboi Health Center. All three involved driving along bumpy, unfinished roads for about 1.5 hours. There were also areas where the mud had become so thick (it is currently the rainy season here in Sierra Leone) that we saw trucks stuck in sections of the road. Groups of people were surrounding the trucks shoveling them out and cutting down trees to lay down sticks for the car to drive over.

At the first clinic, Gbendembu, we spoke to Christiane, a SECHN (State-enrolled community health nurse). At the second clinic, we spoke with Esther, an MCH (maternal and child health) aid. And at the third clinic, we spoke to Yussef, the CHO (community health officer), Eisha, a CHA (community health assistant), Marta, a MCH aid, and Martha, a SECHN. Having all of these different perspectives was a great opportunity.

Because we were only traveling with two other people from the Ukweli team, we had a lot more time to ask questions. We had four main goals for our interviews.

First, we wanted to learn more about the community health worker (CHW) program in order to begin thinking about if our test strip could be implemented at that level (the most basic level). The healthcare workers at all three clinics told us that the purpose of the CHW program was to check for sick people and bring them into the clinic. For most conditions, they would check the individual based on symptoms, and tell them to come/bring them to the CHC for diagnosis and further treatment. For malaria, however, the CHWs carry RDTs (rapid diagnosis tests) and are able to diagnose patients immediately in the community. Additionally, the CHWs check for malnourished children, tell pregnant women to come in for their ANC (antenatal care) visits, and are the first point of contact to let community members know about an outbreak.

Getting an understanding of the CHW system was very helpful. Although, we want the device to be used as a newborn screening tool so that children can start treatment as soon as possible, we also want there to be a program for older individuals who haven’t been tested yet. Knowing that CHWs carry RDTs with them and perform general checkups in order to refer individuals to the health clinics means that CHWs could also potentially carry our device and test individuals who otherwise may not come to the health center for their symptoms (for example: because they are too young, or because they have been living and dealing with the chronic pain crisis themselves for so long and don’t know that there are treatments available).

In addition to learning about the CHW system, we also wanted to get a better understanding of birthing and postpartum practices so that we could figure out how and where we could use our device as a newborn screening tool. At the first two clinics, we were told that all women come into the center to give birth, and stay for 72 hours for observation. Christiane, the SECHN from the Gbendembu health center, also told us that this was the law. Alternatively, the healthcare workers at Mateboi told us that this was not the case at their clinic. They told us that most women in their communities do not come to the clinic to give birth during the rainy season because many of the roads and rivers flood, making it very difficult for individuals to reach the center. Instead, the women typically give birth with a TBA (traditional birth assistant), who is only trained to handle uncomplicated pregnancies. Despite this difference, the clinicians at all three centers said that women and children come in for check ups and EPI (Extended Program on Immunizations) after the baby is born. Esther, the MCH aid at the second clinic, also told us that most women bring their children in for these checkups, because they are scared that something bad will happen to their child if they don’t.

Knowing that most women go to a healthcare center to give brith and stay for three days afterwards, means that it is possible for our device to be used as a newborn screening tool. Additionally, knowing that women and children come in to the clinic regularly after birth is important to know. Since fetal hemoglobin levels are high at birth (and HbA and/or HbS levels are low), we may need to implement the test strip at a slightly later stage (when the child’s HbA and/or HbS levels are higher) depending on the sensitivity and specificity of our device.

In addition to asking questions with the goal of understanding options for implementing our device, we also wanted to learn more about what diagnostic tools are currently being used at the clinics. Although all three clinics were considered CHCs (community health centers), they all had different diagnostic capabilities. All three clinics had malaria, HIV, and urinary dipstick (for UTIs and/or diabetes) tests (although the first clinic said that their CHWs had run out of RDTs for malaria diagnosis). The first and third clinics, Gbendembu and Mateboi CHCs, also both had labs, and could therefore also test for TB. The first clinic, Gbendembu, was especially well-equipped, as they also had a Hb (free hemoglobin) test.

Seeing the different diagnostic capabilities of clinics in Sierra Leone has been very interesting. Although many of the tests, such as for malaria, are easy to use, some tests, like for TB, require a trained lab technician to use a microscope. Despite knowing that more complicated, lab-based testing is possible, we still want to make our device as easy-to-use as possible so that it can be implemented across all health centers (unlike the TB test, where there is only one center per chiefdom, therefore requiring some individuals to travel long distances).

Finally, our last goal for the interviews was to get more perspectives on the prevalence, treatments, and understanding of sickle cell in different communities. Unlike some of our earlier clinic visits, the healthcare workers at all three clinics said that they had had patients with sickle cell. Additionally, Eisha, the CHA from Mateboi CHC, listed sickle cell as one of the most common health problems they see at their center (alongside malaria, STIs, typhoid fever, malnutrition, high BP, diabetes, anemia, worm infestations, and skin infections).

At the first clinic, Gbendembu CHC, Christiane told us that she had had about 10 patients with sickle cell, all aged 7 and over. Although they don’t have any way to diagnose sickle cell, when they have symptoms (including crying, joint pain, restlessness, and pale skin), they send them to the hospital for the sickling test and ongoing treatment. When someone with sickle cell comes to the clinic, they always test for malaria and check hemoglobin levels (this clinic has the Hb test), since sickle cell patients have an increased risk for infection and are often anemic. She also told us that although there was no stigma associated with the disease, the life expectancy was only around 20, and the quality of life was not very good since sickle cell patients are always sickly and in pain. Because of this, she thought that early diagnosis was definitely important, because it would help in determining what drugs to use.

At the next clinic, Mabunduka CHC, Esther told us that she had two patients with sickle cell, 1 pregnant woman and 1 lactating mother. Both women complained of bone pain and had swelling around the joints, and so she sent them to Makeni for a sickling test. After the positive sickling test, Esther had to change her treatment plan accordingly. She stopped giving the women iron supplements (“ferrous”, which are good during pregnancy but bad for sickle cell patients), and gave them folic acid instead (very important for sickle cell patients since it increases the production of red blood cells). Although she has only had these two patients, she believes that there are many more SS patients in her community. She told us that “If someone has sickle cell, they tie them up and tie them down because they believe the devil is inside them… so they don’t come here.” In other words, there are stigmas and misconceptions about sickle cell in her community which prevent them from coming to the clinic. She also told us that the life expectancy is around 28 years; however, “if you have 2 or 3 children without problem, you are expected to live 48 years of more.” When asked if she thought early diagnosis and knowing if you have sickle cell was important, she said it was because there are some drugs, such as iron, which you should not take when you have sickle cell. (Although we had never heard of iron being a problem for sickle cell patients, we looked this up after the interview and found out that taking iron supplements could harm an individual with sickle cell because the extra iron can build up in the body and cause organ damage).

Finally, at the last clinic, Mateboi CHC, the healthcare workers told us that they had many patients with sickle cell, but that a lot of them don’t come to the clinic frequently because they don’t believe that they actually have sickle cell. Like we have been told at other clinics, the patients are typically sent to Makeni hospital to be diagnosed after complaining of bone aches. They also told us that the life expectancy is between 19 and 21, and that the quality of life is particularly bad during the rainy season because the cold leads to more pain crisis. Another interesting comment was made by Yussef, the CHO. Not only did he believe that knowing whether a patients has sickle cell was important for choosing proper treatments, but he also said that knowing whether someone has the sickle cell trait was important for marriage and family planning.