As a Biostatisitician I have used computer software to capture and analyse health data. One recurring challenge is how skewed the data can be, leaving out qualitative data on patient information; what I call the patient’s story. Missing vital information about how patients acquire infections produces misleading results at the public health level. More often than not, inappropriate interventions are executed using this flawed data, ignoring the importance of unique patient stories. I dream of a forum that combines numbers and patients’ experiences. The slogan will be, “Figures and Literature for Better Health Outcomes.” We are a generation where technology has made the world a global village, I love to tell a good story and encourage many people to tell their stories because words are powerful. Literature tells a lot about a certain people, why not explore it in the fight against TB!
Meet Lanyero, she is a Nursing Officer in one of the Health Centre IIIs in Gulu District, Northern Uganda. Lanyero and her husband reside in the staff quarters at the primary school where her husband is the Head teacher. The couple is blessed with three children, Princess, 5 years old, and twin boys, Opio and Ocen, age 7.
In 2013, when Princess was just 5 months old, Lanyero observed irregular breathing patterns in her baby. In addition, Princess would sweat abnormally, soaking her clothes and blankets in under an hour. Generally her baby was unwell and all the medication she gave her bore no fruit. Her baby’s condition was worsening! Lanyero took a bold step: she picked a sample from her baby and sent it to the laboratory for TB testing. She was spot on, her baby’s sample came back positive for TB. Princess had TB at 5 months! Like every mother, she panicked. Courtesy of her background in Health care service delivery, the news sunk in faster. Lanyero enrolled her baby at the TB clinic in Lacor Hospital, Gulu.
Princess’s health improved and Lanyero shifted her focus to where her baby could have acquired the infection from? She jogged her memory on her movements and outside contacts with her baby but couldn’t think of anything. From the day she was born in the hospital, Princess never went out of the house except on days when her mother took her to the Health centre for her routine immunization schedules. Lanyero kept her baby indoors and the baby never had contact with any visitors. The only people that were in contact with the baby were her husband, her twin sons and of course her. She made another bold move and took her twin sons for TB testing. She got the shock of her life, in addition to her 5 month old baby her almost 3 year old twin boys had TB infection too! She enrolled them for TB treatment still as well.
Lanyero never failed to pick up TB drug refills for her three children. She recalls the dispenser always asking her, “Are those drugs for one person’s children?” She always replied “Yes”. “Sorry,” was the dispenser’s response every time, but she never bothered to find out how might Lanyero’s children have acquired the TB infection. Lanyero’s move to unearth the origin of her children’s TB infection continued. She thought about her neighbour’s 3 year old daughter who usually played with her twin sons at the teachers’ staff quarters. Lanyero gathered courage and gave the girl’s mother a piece of advice, “Kindly take your daughter for TB testing.” The girl’s results were also positive for TB! Lanyero harassed her husband to move out of the teachers’ staff quarters and further pushed her husband to negotiate for a transfer out of that school. She blamed her environment for infecting her little ones.
Six months down the road, Lanyero met one of her former neighbours who filled her in on the latest gossip. The girl’s mother, after suffering from deteriorating health for some time, tested positive for HIV and had been co-infected with TB. Princess’s TB infection now made sense! The twin boys had picked up the TB infection from contact with the little girl, who had acquired the TB infection from her mother, who had developed TB infection because she had delayed to start ART treatment.
During the roll out of the Consolidated Guidelines for Prevention and Treatment of HIV in Uganda, Lanyero and I had a lengthy discussion about TB infection and we unanimously agreed that the biggest challenge is the low rates of TB diagnosis/case detection rates in the country, especially pediatric TB infection. I shared with her how I went the extra mile to help identify a 9 year old with TB infection. I volunteer in the ART Clinic at one of my health facilities. This particular day, I was giving ART refills to clients. Even if it’s a refill, I never take things for granted. I always take the clients through the prescription and the 5Rs (Right medicine, Right Time, Right Dose, Right way and Right frequency.)
I left my station to answer a phone call and this 9 year old girl, who I had already refilled for, walks to me and kneels down; she requests,” Can I have additional medicine for my cough?” Though I am not a medic, I know that daily septrin is given to people living with HIV to keep off opportunistic infections. If this girl has cough then her problem must be bigger! I take her hand, lift her up and lead her to the clinician’s room. The clinician was attending to a queue of clients but I ignored them and handed over the girl for re-examination. The clinician fills in the sputum request form and sends the girl to the Laboratory. The next day I see this same girl at the clinic, I asked her,”What are you doing here? She answered that they have told her to wait. During my break the clinician tells me that the girl has TB infection and was going to be enrolled in the TB clinic that day.
After sharing the above experience, Lanyero shocks me by recounting how she single-handedly diagnosed and managed TB infection in her children. She goes on,“Diana, if I was not a medic, I would have had three graves in my back yard, each belonging to my dear children. My children would have all perished from TB infection because we do not go the extra mile to rigorously screen for TB among the population.”
We end our discussion vowing to train the health facility staff on the importance of detecting TB and HIV- TB co-infections. It is better to assume that everybody could have a TB infection and find out you are partially wrong than to assume no one has TB find out you are wrong. The former will diagnose TB infections early and link clients to treatment while the latter will increase coffin sales; it would be such a shame because bottom line is TB IS CURABLE!