Week One: Arrival
As I sat at the gate in Dubai waiting to board the plane heading to Entebbe, I was struck by the stark difference between this terminal and the one I had just passed through given both are part of the same United Arab Emirates airport renowned for its extravagances. I am on my way to Uganda for the 6-month follow up visit with the HRSA-PEPFAR (President’s Emergency Plan For AIDS Relief) Skills Sharing Project. HRSA-PEPFAR is pairing up best practice experts in HIV care from Ryan White-funded clinics in the U.S. with Ugandan healthcare facilities treating people living with HIV in three districts lagging behind their countries’ measures on HIV viral load suppression, particularly in children, adolescents, and men.
As I walked past the luxury boutique shops, fancy architecture, and high end cafes and restaurants and hopped on the transfer bus to Terminal 2, I quickly realized as we drove across the grounds of the airport, finally pulling up to a non-distinct, old building, that the experience I was hoping to have my first time in the Dubai airport was not going to be what I expected. It reminded me of my transit through Brussels on my last visit to Uganda in May. And I got upset. I realized that international airports in many high income cities seem to pay very little attention to the experience of the passengers flying out of terminals heading to low and middle income countries. People traveling to such destinations tend to have to line up and have their documents inspected multiple times; there generally is a bus that people have to wait for in small, crowded spaces to transport them to these ‘less-than’ terminals; and there usually is another bus that takes people to the actual plane after waiting at gates that seem to always be over-populated with limited options for seats, for food, and for entertainment. Here there were no walking escalators, no bright cheerful spaces, no inviting cafes, and no jet bridges that lead you straight onto the plane.
The message resonated very clearly to me—‘we don’t care about people from the developing world’ or to be slightly more generous, ‘we care about you differently’. That very structural and aesthetic difference does set a tone for how people are treated by the rest of the world and how people then feel about themselves. It perpetuates the world’s perception that people from developing countries are unworthy. And this reinforces the stigma and discrimination at the heart of the disparities experienced by populations disenfranchised for reasons usually having nothing to do with them and everything to do with the circumstances fate has dealt them.
We see this all the time in healthcare. Individuals who are poor, who are racial or ethnic minorities such as African American or Hispanic, who are LGBT, who use drugs, who are uninsured, who are undocumented, all suffer health disparities because of how they are treated by the medical community and by society at large. And I remember very clearly how pleasantly surprised and amazed I felt the first time I walked into Community Health Center, Inc. (CHC) of New Britain, CT to interview for a job 14 years ago at one of the largest federally qualified health centers in the nation catering to the underinsured and uninsured. I expected to find a clinic looking much like those ‘less than’ terminals and instead found a center that was bright and clean and warm and comfortable. Providing inviting environments for populations who usually experience marginalization does not solve their plight but it sure does send a very important message: we care about you, we respect you, and you are welcome here.
With these emotions and thoughts fueling me, I boarded the plane and headed to Uganda once again, with an excited anticipation of what would be lying in store for us these next two weeks. Since our May visit, there has been ongoing communication with our Ugandan colleagues through virtual platforms like WhatsApp and through live videoconferencing learning sessions using Zoom. Given connectivity limitations, however, especially in remote areas of the country like the Nebbi district where I was and will be again, the full potential of these interventions has not yet been reached and will be one of the big areas of focus this trip. In the coming final year of this project, the ongoing support and communication we will be providing will occur mainly through these virtual modalities.
Upon landing in Entebbe, it struck me how familiar everything was. There was a comfort in knowing what to do as I went through immigration, getting my visa stamped into my passport, going through security, collecting my luggage, and heading outside into the hot, muggy weather of Uganda’s rainy season where I was greeted by the hotel’s driver. He had waited patiently for my plane to arrive, being about 2 hours delayed. It was now almost one o’clock in the morning, with just under an hour drive ahead of us to Kampala. I was very much looking forward to the bed that was awaiting me in the beautiful, luxurious Hotel Serena in Uganda’s capital. The whole U.S. team was arriving today and we would all be together the next couple of days before we dispersed to our various districts.
During the car ride, my conversation with Gracious, the driver, emphasized to me how small the world truly is and how global our vision for our collective future must truly be. It also underscored the importance of the mission of the work we were here to do in Uganda. The first part of our conversation happened to unfortunately steer toward petty crime as I had received a message from my neighbor that there was a break-in in our neighborhood and that some bikes were stolen out of their garage. Gracious expressed his surprise that theft like that happened in the U.S. He said he thought that only happened in Uganda and proceeded to tell me a few stories of his own. I reassured him (if I could use that term) that crime is very much a problem in the U.S. as it is here. Then, our conversation turned to tolls and how the Ugandan drivers were all worried that the new highway built between Entebbe and Kampala was going to start collecting tolls soon and we chuckled as I discussed with him the controversy over tolls in Connecticut.
As we approached Kampala, I saw lightning strike over the city which loomed in the distance. I mentioned how happy I was that I remembered to pack an umbrella with me. We spoke about how November is now the end of the rainy season and that this year, the pattern to the rain was completely different. It seemed to rain less and in spurts, unlike past years where it was raining nonstop. We reflected on how no place is immune from climate change. (As a matter of fact, a U.S. colleague who was just in Zambia told me the very next day, there were parts of the Zambezi River you could walk across, which I was appalled to hear, remembering my one and only experience white river rafting down that mighty, roaring river many years ago.)
Gracious then asked me what brings me to Uganda and I told him that we were working on sharing knowledge and experiences with certain health centers and hospitals in the country struggling to improve their HIV care and treatment. He remarked on how great that was that we were willing to come and help Uganda out. I answered him that we are currently embarking on a large scale campaign in the United States to end the HIV epidemic by 2030. I explained to him that there are parts of the U.S. much like parts in Uganda that are struggling with new HIV infections in certain populations and that we needed to improve our treatment outcomes just as much as Uganda. As excited as we were to be in Uganda to see how we could help, we were also hoping that we would be learning from them lessons to take back to the U.S. to help us with our efforts to control this epidemic that has ravaged this world for nearly four decades. We are fighting the same battles and searching for solutions to the same problems. We remarked on how truly we are one world and how we must all work together for all of our futures.
By this time, we arrived at our destination. I checked into my room, and crawled into my bed. It was almost 2:30 in the morning. I was excited to catch up with all my wonderful, inspiring colleagues the next day and my mind wondered to the coming 2 weeks and the progress and challenges we were going to find since our last visit. And with that, despite the jetlag, the tiring, very long journey caught up with me and I thankfully fell asleep.
Week One: Day 1-2
I woke up the next morning surprisingly fresh, having stood under the magnificent shower of the hotel a bit longer than necessary, knowing that in the next day or so, I would likely not be privy to a thorough shower for the length of my stay in Nebbi. At breakfast, I was happy to run into a number of colleagues who I would be spending the next two weeks with and we were able to catch up on each other’s lives and share pictures of our kids and comment about how fast they were growing up and how hard it was to leave them for this length of time.
Nevertheless, the exciting work we are doing here has propelled all of us to leave our families and regular jobs behind in hopes of making some difference. Despite the comforts of the Hotel Serena, and knowing the conditions awaiting us in our districts, we were obviously all anxious and ready to hop in our respective cars and get out into our regions. So, the next day and a half in Kampala seemed to just drag on. Monday was Veteran’s Day and we quickly realized that the usual meetings at the U.S. Embassy were not going to happen. We met as the HRSA-PEPFAR team and were debriefed on the next two weeks and the expectations of us. It all was comfortably familiar and we knew the routine. Tuesday, we had separate meetings with representatives of the U.S. government and the Uganda Ministry of Health (MOH). This time round, these meetings seemed to lack the air of formality they had in May. The purpose of these meetings was to remind and update the higher-ups on the goals of this program. At the MOH, we had a more in-depth briefing, presenting the May visit feedback and findings from all stakeholders, and we discussed what the plan and objectives were going to be for this second follow up visit over the next two weeks. We highlighted that in the coming year after this visit, support will only be virtual through WhatsApp and Zoom and we emphasized the limitations of many of the sites to be able to get onto these platforms. Connectivity, especially in the remote areas like the Nebbi district, was going to be the most challenging.
That evening, we had our communal dinner before we all retired to our rooms, hoping to fall asleep quickly and start our journeys early the next morning. The last 48 hours reminded me of my college days when I was involved in theater and how the cast would form such intense bonds for the concentrated period of time we would put on a play, then disband when the run was over. Yet, whenever we would see each other again, we would jump right back in with a familiarity that only those who have been through something intense together would really understand.
We recounted so many stories from the last visit, laughing at our experiences. While regaling each other with the vivid memories of our May visit, the rest of the Nebbi team seemed to recall the conditions in a much harsher light than I did. When I stated that “it wasn’t that bad”, I promptly received a resounding “Oh, Marwan…” and a shake of their heads. They quickly explained my poor recollection as a defense mechanism to allow myself to even contemplate coming back. I don’t know. Maybe the work we are doing here is akin to smelling a baby’s head– that intoxicating smell definitely made me forget all the sleepless nights, crying fits, and diapers we endured. Regardless, we were all eager to get on the road. This time we were mentally and physically prepared for what lay in store for us. We were looking forward to seeing first-hand the progress we had heard presented on the Zoom conference HRSA had had with our Ugandan counterparts about a month or so ago. We were also wondering what challenges we were going to find—whether they would be the same or whether new ones had emerged since our last visit. As we said good night to each other, it felt like it was the eve of the revival of that exhilarating play we were so excited to be part of again.
Week One: Day 3
We managed to hit the road the next morning bright and early for our 8 hour drive to the northwest of the country. As we made our way out of Kampala, we left behind its crowded streets of cars and vans and buses and pedestrians and people trying to sell you fruit and coal and furniture. We left behind the gangs of Bodabodas—motorcyclists who serve as taxis to most of Ugandans. We even heard that there is an Uber Bodaboda App to order one if you needed to. No helmets are used with most of the Bodabodas and they dominate the roads. Accidents on Bodabodas are very frequent and often fatal. Yet, people carry their groceries on the back of a Bodaboda; some carry furniture off the side or a mattress on top of their heads. I even saw a family of 5 hanging on by the tips of their fingers on back of one. Along the sides of the roads, there were tons of unfinished buildings with people renting store fronts to sell their goods. There were also people selling anything and everything in front of these buildings in what seemed to be makeshift marketplaces but were actually well established places to sell goods. It seems so many people sell similar things; I am not sure how the majority survive. Perhaps people develop loyal clientele who come to buy from them; perhaps some buy from different people all the time to spread the profits equally; perhaps some rarely make enough to put food on the table.
The one thing that is evident is that it seems everyone is trying to sell something to make a living—whether it is just a small basket of bananas or multiple baskets of sweet potatoes or several large bags of coal or a storefront full of clothes and shoes or a block full of beautifully crafted furniture from four-poster beds to chests of drawers to doors and gates all laid out by the sides of the road.
As much of a city person as I am, I confess I could not wait until we got past the pulsating, busy streets and we reached the outskirts of Kampala. There, we began to see what I remembered so vividly from May: the incredibly amazing open sky with its blue and white cloud formations that stretched to the horizons every which way you looked. The lush fields and vegetation of the varying hues of green stood out against the white-blue backdrop. I just kept snapping pictures out the window of the car thinking to myself ‘I have to capture this beauty’. Of course, that was indeed an impossible task.
It is hard not to think whether this openness will ever disappear as Uganda grows economically and if this country would ever grow in a way that would encroach on this beauty. Either way, I am thankful and very cognizant of how lucky we are to have been afforded this opportunity to experience Uganda as it is now.
Second time round, I feel my eyes have started to distinguish more details, discern subtle and not so subtle differences in the landscapes and the storefronts and the villages and the people we passed: which fields looked better planted with what vegetation; which markets had better products; the quality of the storefronts; the quality of the goods; the dress of the people; the footwear people had on. I was able to see who owned goats (about $20 each) and who had cows (about $200 or 300 each). I was able to recognize which villages had a higher standard of living compared to those suffering from intense poverty.
When we were here in May, schools were not in session. In Uganda, they spread out the months off; instead of having it all in the summer, they sprinkle them throughout the year. This month of November, kids were back in school. Nevertheless, we saw as many kids in school as we did out of school. It turns out schools require a fee and uniforms and many of the parents and caregivers cannot afford to pay for either.
As the hours rolled by, we were shocked at how we recognized landmarks so readily and had a good sense of where we were in relation to our destination. Indeed, this time round, it seemed we were coming back to visit a place we knew well, a place that filled our hearts with fond memories of the bonds we formed with each other, with our Ugandan colleagues, and with the country.
Week One: Days 4-5
I cannot capture in words how we felt when we walked into Parombo Health Center (our first site visit of this trip) and how warmly and enthusiastically we were greeted by the staff. It was as if they had not seen their dearest family or friends for years. With huge smiles and laughter, they took our extended hands and pulled them in for hugs. It may have been that they were simply and pleasantly surprised we actually came back. Either way, the happiness and gratitude for our return were evident in their welcome. I was not sure if they would remember us clearly from 6 months ago; after all, we had spent only a few hours with them last time. Yet, everyone was ready to share with us the progress they have witnessed and the challenges they continue to have. There seemed to be a familiarity and a trust that we had built from our very brief visit with them in May that was solidified upon our return.
We were asked how we can help patients disclose their status to husbands, wives, loved ones; when should children be told that they are living with HIV so they understand why they are taking this medication.
We discussed patient-centered care—something we talk a lot about in the U.S. and strive to deliver, not always successfully. We shared our experiences with stigma and how destructive it has been over the years and how it continues to be one of the greatest barriers to care in the U.S.
We had the same experience in Goli the next day. We were met with warm hugs and huge smiles everywhere we went. We were in our element as we interacted with our Ugandan colleagues, catching up and listening to their voices as they shared their thoughts and experiences with us. They advocated for their patients who, with no surprise, continue to experience barriers that stem from huge challenges, many dictated by social determinants of health much like the U.S.—transportation, housing, and poverty—issues well beyond the scope of our mission. Stigma continues to loom large. We heard about patients who would come for their appointments but would stay outside the ART Clinic (this is what the HIV clinics are called at most of the sites; ART stands for Anti-Retroviral Therapy) because they did not want to be seen walking into the area where people know those living with HIV go to receive their care. They do not answer when their names are called. Only at the end of the day, when most people have left, do they come forward to grab the clinician’s attention in order for them to be seen.
They shared how they had become more confident in switching patients’ HIV regimens to get them virally suppressed; how the viral load turnaround time had been significantly reduced; that the quality of their adherence counseling had improved; that they started to work on interventions to specifically address issues and circumstances their cross-border patients from the Congo are experiencing.
We also heard frustrations that things were not changing fast enough. We ruefully agreed that change occurs in small steps, but that their motivation and enthusiasm and passion they were exhibiting are what will keep fueling these changes. We shared that we are usually quite frustrated ourselves with how slow things change back home. That we need to remind ourselves constantly to stay the course, to place our mission front and center, and to always keep our patients at the heart of all that we do. Things that they already understand and do.
Sitting in the car, looking out the window, as we ride back the couple of hours to the hotel in Arua each evening, we would share our observations with each other, review the conversations we had with our Ugandan colleagues, and discuss the great strides they have made and the next steps that need to be taken to reach their goals. Looking at the landscape as the sun would set and the bright oranges and yellows would paint the sky, we would settle down into our seats. By the time we approached the gates of the hotel, we were more than ready to, first, wolf down dinner having had only a few snacks since breakfast, and then pull out our computers for an evening of writing down all our observations and recommendations in the debriefs of the day.