New member to our sickle cell screening team
We have recruited a new member to our sickle cell screening project by the name of Charles James Kitonsa. He is pharmacy graduate and is currently working at Nsambya Hospital in Kampala. Since he is based in Kampala, he is a timely addition to our team as from time to time we will be shipping needed reagents from overseas to replenish supplies at the screening sites. We need somebody in Kampala to receive the supplies and arrange for transport to the screening sites and Charles will be invaluable for fulfilling this role.
Cellulose membranes received at the Kiboga screening site
We recently ordered cellulose acetate membranes from China to be used for screening at our sites. The membranes were delivered by DHL to the capital city, Kampala. We however, have been met with a serious challenge of local taxes. Uganda tax authorities charge a 54% tax on medical supplies. With the help of Kiboga Hospital leaders we were able to convince the tax authorities that the membranes are disposable medical item that should be taxed at a lower rate. We were finally taxed at 24%. In future resupply runs we will try to better take into account such bureaucratic barriers.
Our departure from Entebbe on Saturday morning was truly bittersweet. Cruising down the dust-covered roads for the last time in what will surely be months, I couldn’t help but feel a strange sense of nostalgia for all of the sights and sounds which had grown so familiar to me. With the friends, colleagues, and dear family we left in Kiboga growing further and further with each turn of the wheels, it was only natural to sift through the memories of the past eight weeks and marvel at all that we had accomplished. After all, not only did I leave Uganda with a renewed sense of my place alongside the people of my culture and heritage, but my father and I, together with a team of brilliant and dedicated individuals, managed to implement a meaningful medical program which will surely save many lives. During our last day in the lab, my father and I engaged in a lengthy conversation with Grace, the manager of the Kiboga hospital lab, about the profound interest that the local community was exhibiting in our screening program. He talked at length about witnessing the devastation that sickle cell has caused in the lives of families and the incredible hope that the people have in our screening technology to make a difference.
Looking back at our departure one week later, I can’t help but feel incredibly proud, excited, and relieved – I contacted our lab mates to check in on the screening process and am overjoyed to report that the screening lab is up and running. Just this past week alone, the lab screening 46 patients in total, diagnosing several carriers. In the spirit of being economical and working towards sustainability, only old membranes were used. In the next coming months, the lab will ramp up the pace of screening and crank out even more tests as more and more people flock to have their children diagnosed. Even now, our supporters are still donating on our GoFundme, valuable contributions which will aid us in purchasing additional membranes to sustain the screening efforts until our long-term goal of establishing a sickle cell clinic is finally realized. It is with profound and sincere gratitude that I also acknowledge the generous sponsors of my summer fellowships, the Tetelman Research Fellowship, Sunrise Foundation Travel Grant, and Pauli Murray Richter Summer Fellowship, for making these summer endeavors a real possibility.
I’m writing this post retrospectively because of how busy the past few weeks have been, not only with managing the sickle cell screening project but also with the constant rushing back and forth to see our relatives and experience more of Uganda when we can squeeze out the time. Perhaps the most lively event was the celebration of my Jjajja Elidadi’s 90th birthday two weeks ago. It was quite a lovely program, beginning with a church service (the canon was also 90 years old) and concluding with a dance party and singing performances by my cousins. Without a doubt, the highlight of the event was when my Jjajja’s older sister Miriam, who will soon turn 100 years old, swaggered confidently to the front of the stage and put us young folks to shame with her dance moves. The following weekend, we returned to Kampala yet again to attend an introduction ceremony with our family for some distant, unknown relative. However, things soon turned sour when we realized that the groom’s family (who were purportedly preparing the dowry) arrived five hours late! I was told that all was well in the end, and after all, as they say here in Uganda, “African time” functions in blocks of a few hours – very rarely does one come at the time he or she has promised.
Of course, my favorite excursion so far was our family trip to the lake beach in Entebbe this past weekend. Before we reached, we also had the opportunity to visit Uganda Martyrs in Namugongo – one of the premier boarding schools in the country, where my Uncle Paayi’s son, Junior, is studying. As I flipped through his notes, it became apparent to me just how capable the Ugandan education system is (as a 13-year old, Junior has already learned the fundamentals of electrostatic physics), but also how wide of a gap exists between the resource-rich cities and the poor rural areas. As with anywhere, including our home in the United States, money buys opportunity. All was smiles when we arrived at the beach, however: the water is absolutely wonderful and extremely clean, and as my uncle Enocka explained to me, the beach is THE weekend destination for the throngs of youngsters which we saw there – here in Uganda, they come, drink, and let loose in the waves. I couldn’t have had a better time with my cousins and we concluded the day by feasting on fresh fish and chips amidst the backdrop of a brilliant sunset.
I surprised myself the other day with how familiar and accustomed I’ve become to life here in Uganda. As I strolled down a meandering dirt path to go and visit Mama Kalema’s cows one evening, my local friend Charles Kabende pointed out that I’ve learned a lot – a bit of the language here, a smidgeon of culture there. At the time, I felt flattered but reluctant to acknowledge that I’d made any meaningful progress in coming into my own here in my father country. After all, my mornings and afternoons are spent crouched over the lab bench or scurrying hurriedly from one school to the other, quickly consuming the greater part of the day. It’s not as if my weeks here have made me appear any less aberrant to the local people; when I go for jogs deep into the Kiboga hills, I am still hit with gaze after awestruck gaze, while the children never fail to run up and touch me as if to make sure that I am, in fact, real flesh and blood.
What hasn’t stood out to me so much, however, are the small things that have crept into the routine of my life – nights spent conversing with local friends or my cousins, aunts, and uncles, lazy evenings ambling down the dust-covered highways to buy milk or chickens to slaughter. In such a short time, the sights and sounds and smells of this beautiful country, from the incredible diversity of flora and fauna to the charming and forever amusing sight of lively locals packed in front of small, dimly-lit shops or into the ubiquitous 14-seater taxis, has become so incredibly commonplace and comfortable for me. Indeed, it would be wrong for me to say that I have assimilated fully into way of life here, and perhaps I never could, no matter how long I stayed. But without even realizing it, in such a brief span of time, I’d settled into the rhythm of life here and have learned to enjoy its simple pleasures. What I know for certain is that my love and appreciation for this country, my culture and family history, has grown so much. When the time comes to depart, there will certainly be plenty to miss.
Today, we took the two and a half-hour long commute to Kampala to visit the central public health laboratories in Butabika, where the nation’s current sickle cell screening efforts are being conducted. Our goal was to tour the laboratory facilities and meet Dr. Kiyaga, the head of the facility to inform him of our research efforts in Kiboga and seek his blessing. The buildings are quite modern and well-equipped; stepping into the sickle-cell screening laboratory was like walking through a miniature rendition of the screening laboratories back in Austin, Texas – on a much smaller scale, the same isoelectric focusing technology is being used. In addition, the building is equipped with facilities for HIV, fungal infection, and viral/bacteriological outbreak diagnostics, prevention, and control. Accompanying us was Sharif, who addressed the need to expand the sickle cell screening laboratory’s capabilities for detecting especially abnormal hemoglobin variants (Such as Beta-Thalassemia) so that individuals with unique circumstances do not slip through the cracks. At the moment, the IEF gels are only used to diagnose for four different bands – hemoglobin A, S, F, and A2/C. Our meeting with Dr. Kiyaga also went well – the man is excited about, and receptive to, the work we are doing in Kiboga.
On our way home, my father and I packed into the back of a local 14-seater taxi and discussed our next moves. We are currently engaged with multiple suppliers of the cellulose acetate membranes and hope to identify a reliable and affordable option to facilitate the long-term operation of the screening laboratory in Kiboga. With only a few weeks left in the country, we hope to have an air-tight and well-oiled system in place so that we can leave with assurance that our work will continue.
More than a week has passed since we’ve established ourselves at the health laboratory in Kiboga. In that time, we’ve managed to meet with several coordinating officials at the hospital and train five medical laboratory technicians on how to use the electrophoresis machine. Perhaps most important of all have been our painstaking revisions of the standard operating procedures (SOPs) as we gradually discover new ways to make the screening technique more economical. What this has entailed is finding ways to replace reagents or materials with items that can be obtained more readily, at less cost, or locally. For example, we’ve managed to figure out a way to produce our own hemoglobin controls using whole blood from volunteers with known disease status and have discovered that water can be used in place of the hemolysate buffer, assuming that the dried blood samples are relatively fresh. Our greatest victory thus far has been the solution to what was formerly our biggest concern – namely, the price of the disposable acetate membranes. Previously, we had resorted to running only 8 samples per membrane and then immediately staining for a permanent record, which meant that the price of screening was about $0.87 per patient, a far cheaper figure compared to the isoelectric focusing which serves as the gold standard but still nothing to crow about. Over the past few days, however, we have learned not only that each membrane can accommodate more than 8 samples, but that even used membranes can be re-run multiple times without the results deteriorating in quality. The implications of these results are momentous, as this bodes well for the long-term sustainability of the screening efforts by cutting the cost of screening each patient to mere cents (or hundred of Ugandan shillings, a very cheap figure). As we continue to seek ways to streamline the process, we hope to present cellulose acetate screening as a reliable, quick, and efficient screening method, perhaps to be implemented across all medical laboratories in Uganda.
Perhaps not surprisingly, our team is not the only international group of scientists which have taken an interest in Kiboga. Earlier in our program, we were made aware of a team of Israeli doctors which have been operating at the hospital for decades. One member of the team – Dr. Shae, who also refers to himself the “Crazy Muzae Muzungu Doctor” (Crazy, Old, Light-skinned), has already made contact with my father and I and has expressed interest in collaboration. The country of Israel has been doing great work in the area – just today, we gathered together for a hospital-wide celebration and official opening of a new diabetes clinic which was sponsored by the Israeli government. With performances from local school children and a visit from the Israeli ambassador and head of the Ugandan Ministry of Health, it was a special time. It is a great assurance to know that we are not alone in hoping for medical progress in Kiboga. Perhaps in time, we too will be able to open a sickle cell clinic here at the hospital – our friends from Israel have certain redoubled our desire to do so.