Spotlight on… Allen Kekibiina, GRAIL field coordinator

As told to URBAN ARCH Admin Core staff, August 2023

Tell us about what led you to work in the field of HIV and alcohol research, and what led you to work on the GRAIL study?

My decision to get into HIV care was in the year 1996, when I came face to face with HIV after our first child (my stepdaughter, Sharon) whom we loved so much as a family, was found to be HIV positive at the age of six. Despite being in and out of Mbarara Hospital with her, it took us about a year to get answers. Sharon was finally tested for HIV and the results were shared with us as a family. Having this innocent young girl under my care for years and knowing that she was HIV positive hit me hard. We could not afford antiretroviral therapy at that time, and no one gave us information about it, not even support through counseling. Not to mention, the kind of stigma we went through as a family both in the community and in the hospital as we nursed her. I was traumatized so much by this child’s sickness and the nursing process. However, I made a decision that I was going to help other people with the same challenge. I decided to be part of the solution and to fight stigma against HIV/AIDS. At the time Sharon succumbed to this deadly virus in the year 2000, I had completed a counseling course in HIV/AIDS and was volunteering at The AIDS Support Organization (TASO), Mbarara Branch. I was determined to work in Mbarara Hospital, and I achieved this in the year 2001. I am very proud because I made a difference!

I started as a volunteer in TASO Mbarara Branch for about two years, beginning in 1999. TASO recommended me for a job opportunity with Medicine San Frontiers/Epicenter at Mbarara University as a Research/Hospital counselor, which I gladly accepted because it was taking me closer to where I wanted to be. In these five years that I worked in the hospital and Immune Suppression Syndrome (ISS) clinic, I also met and worked with many great researchers, including Dr. David Bangsberg, Dr. Judy Hahn, and Dr. Nneka Emenyonu.  In this same period, in the hospital, I was also the Family Treatment Fund (FTF) manager, helping to identify patients that met the WHO guidelines for stage 3 and 4 HIV, who could not afford ART. FTF supported these patients and helped them start ART. I was recommended for another job and left for three years to work with Medical Research Council/Uganda Virus Research Institute, Masaka Branch. In the year 2008, I came back to Mbarara, and worked with Nneka Emenyonu and David Bangsberg on the Transport Support to Improve ARV Treatment Outcomes (TRANSPORT) study for two years. As the study was coming to an end, Nneka and Judy Hahn asked me to work on a new HIV and alcohol study, titled “Changes in Alcohol Consumption in HIV positives in Uganda,” also known as the BREATH study. I have loved doing this work because it is in line with my initial plan of being part of the solution for problems facing people with HIV. Since then, I have been working with this team on many different HIV and alcohol studies. Through Judy and Nneka, I am now working with the Boston Medical Center team on the GRAIL study!

What are the most challenging and most rewarding aspects of your job?

The most challenging part of my job has been seeking study approvals from many regulatory authorities. It often takes months of anxious waiting to be approved. This has been challenging for me. And once we start enrollment, we go to the field with a lot of vigor, and some months down the road, the enrollment numbers are not growing! As someone coordinating the study on the ground, pressure builds up from within.

The most rewarding aspect of my job is receiving a call from a joyful participant or participant’s family member appreciating that the study saved their marriage or has changed the life of their son/daughter/husband/wife or that they would like to send their other relatives who drink at unhealthy levels to participate in the study, hoping that they too may change. Although personally, I benefit in other ways like earning a salary, hearing these testimonies is even more rewarding for me.

What is your favorite memory from a past study that you’ve worked on?

During my working years with Medicine San Frontiers/Epicenter at Mbarara University, I worked as a research counselor on a study titled “Systematic Screening of Cryptococcal Antigenemia in HIV-Positive Adults in Uganda.” My role included providing counseling to study participants and providing pre- and post-test HIV/AIDS counseling for patients who were admitted to Mbarara University Teaching Hospital Wards, as it was its name then.  Much of my work as a counselor was on the medical and tuberculosis wards where very sick and hopeless patients were admitted. I worked with many of them to restore hope to them. This was my joy! I was also responsible for giving simple tutorials to medical students to support them in providing basic counseling for their patients. There is no greater joy than remembering that I was of great help to these young students and that I was able to help lots of people get tested for HIV.  I supported patients on discharge and linked them into care to the ISS clinic where I was the head counselor. In this era, where ART was for the well-to-do individuals and stigma was very high, patients appreciated getting to the clinic and receiving free Septrin, supported by Family Treatment Fund.

Sometimes I see and am able to chat with these patients at the ISS clinic. It is my pleasure seeing them living positively after so many years.

During this period also, as a research counselor on the hospital wards and in the ISS clinic, we wrote a paper titled “Providing HIV/AIDS Care in Mbarara, Uganda,” which I co-authored, and it was published in one of the world’s highest-impact academic journals, The Lancet. I was thrilled to get news about this publication. These are some of the greatest memories I have had. The fulfillment and happiness I have found in doing all this is indescribable.

Tell us one thing about yourself that readers might find surprising.

The famous ISS clinic that people see now had a humble beginning with just 4 staff members. I was the clinic counselor, medication dispenser (with no formal training in this), health educator, administrative assistant, and interpreter for visiting physicians in the clinic. The clinic had no electricity at the time despite overwhelming patient numbers, so we would work as late as 8pm, using Dr. Larry Pepper’s car lights to see. We also did not have enough space. I did most of my work under a tree. (Dr. Bosco Mwebesa and Deborah the nurse, were part of this, and have both passed on- rest in peace.)

Any other comments?

I am looking forward to starting participant recruitment very soon on the GRAIL study! There may be challenges along the way, but together we will make it.  We will meet our target in the next few years!