UNC pharmacists collaborate to improve pediatric cancer care in Ethiopia

A group of UNC pharmacists strive to help Ethiopia's largest specialized hospital overcome challenges and improve pediatric care amid medication shortages and limited resources.

ADDIS ABABA, Ethiopia — The 3-year-old boy sat cross-legged on his hospital bed. He was all skin and bones, except for his stomach, which was bloated and protruded from the bottom of his dingy, off-white shirt.

A blood transfusion IV line was stuck into his right hand. His face was blank.

He has leukemia.

Two jugs of water stood in the corner of his room at Tikur Anbessa Specialized Hospital, the first pediatric oncology hospital in Ethiopia. The boy’s father used them to bathe his son and quench his thirst because the pediatric oncology unit did not have running water. A copper pipe had eroded, and no contractor would take the job to fix it.

“Daddy,” the boy said in Amharic. “Can you lay me down? I’m tired.”

The five University of North Carolina at Chapel Hill pharmacists watching the boy were shocked by the conditions of the hospital. They were there to implement the first-ever national pediatric center registry, which would identify patient cancers, track therapies and subsequent complications, and document outcomes.

But the pharmacists were just now realizing how daunting their project had become.

The practices in the Addis Ababa hospital are not only different from the practices in American hospitals. They can be seriously detrimental to the children. For instance:

• Parents bring medication from home and administer it to their sick children even when it’s medically unadvised and could harm the children.

• Three floors in the hospital haven’t had running water for a year, so family members are responsible for providing water for the patients to wash themselves and their clothes, hydrate, and use the bathroom.

• The hospital isn’t air-conditioned, so windows are left open, letting in airborne microbes, dust, and fungus, which could aggravate a patient’s condition.

• Drug shortages are common, and patients aren’t getting vital medication.

• Medical records are lost because families take their children’s medical charts home and sometimes don’t return them. Often the medical staff doesn’t know what sort of treatment patients might have gotten.

• Because cleaning staff members weren’t paid for three months, they went on strike for a day, which left the hospital filled with waste and covered in layers of grime.

“People always say the prospect looks positive for Ethiopia,” said Benyam Muluneh, hospital and clinical pharmacist practitioner in the leukemia clinic at UNC-Chapel Hill. He was born in the Addis Ababa hospital. “But the healthcare sector is probably the area in which things have been stagnant. The hospital looks like how it was in the 1960s. It just stayed the same.”

The UNC pharmacists were in Addis Ababa for 14 days to analyze the hospital’s practices, identify roadblocks, and determine how to implement the registry, which was funded by The Aslan Project, a nonprofit organization focused on pediatric cancer.

In the United States, Katie Buhlinger, a second-year oncology pharmacy resident at UNC, has a morning hospital routine. She gets to the UNC cancer hospital at 7 a.m., scans patients’ charts on her laptop, and enters the first patient room promptly at 8:30 a.m.

But time moves more slowly in Ethiopia. Rounds were supposed to start at 9:30 a.m. It was almost 11:30 a.m. and the residents and physicians were still huddled over a table, reading paper charts, holding X-rays up to the sunlight, and jotting down notes inside a manila folder.

Buhlinger waited.

After nearly two hours of preparing for rounds, a pharmacist took Buhlinger and Jared Borlagdan, a second-year oncology pharmacy resident at UNC, into a closet, grabbed two light yellow surgical gowns from a pile, and handed them to the UNC pharmacists.

“These weren’t clean,” Buhlinger said. “They were used. You could smell body odor on them.”

In a patient’s room, Buhlinger noticed a patient’s parent pouring an orange liquid into a cup. It was Motrin. The patient, a 6-year-old boy with leukemia, was in the hospital for fungal pneumonia. She suspected the parent was administering Motrin to treat a fever.

The patient was on Amphotericin, an antifungal medicine with a high rate of renal failure as a complication.

“You should not be using a medicine like Motrin in a patient who is at risk for having renal complications,” Buhlinger said. “In my head, I was like, ‘Oh. Wait. Are they going to do that?’ Jared and I were giving each other the eye.”

Suddenly, an attending physician muttered, “Oh.” She grabbed the bottle from the parent’s hand and poured the orange syrup back.

“I like to believe that she came to the exact same conclusion that we should not be using Motrin in this patient,” Buhlinger said.

Someone brought in a different bottle. Buhlinger knew it was probably Tylenol.

It was, but when the attending physician poured the usually red medicine into a cup, a dark brown syrup oozed out. The room erupted with comments of “ugh” and “gross.” The team stared at the thick liquid as the attending physician dripped the syrup onto the floor. A pharmacist pointed out that Tylenol should not look like that and it was most likely expired.

Eventually, the team found a bottle of fresh, red Tylenol to give to the patient.

Buhlinger said that at UNC, every drug a patient takes is verified by a pharmacist, dispensed from a pharmacy, administered by a nurse, and documented in the patient’s medical chart.

“We definitely don’t let parents administer their own medications,” Buhlinger said. “I’m sure it happens all the time when the child only lets mom give them the medicine, but the nurse draws it up and is probably there to witness mom give it. It’s definitely not coming from home. Mom is not drawing it up and pouring it into the cup. That is not appropriate.”

Meanwhile, the window in the patient’s room is open. In fact, in every room, each of which usually housed two patients, the window was left open.

“I was like, ‘What?’” Buhlinger said. “There’s flowers outside. All these things are fungal growing and your patient is admitted with fungal pneumonia.”

Airflow in U.S. patient rooms is tightly controlled. Windows are sealed.

“It’s to protect patients from being exposed to other patients,” Buhlinger said. “Here, having two patients in a room is mind-blowing.”

A large window at the end of the unit hallway overlooked the city’s skyline. Skyscrapers and mountains dominated the view but the street below, lined with beggars and stray dogs, bustled with activity. Every few minutes, a different parent walked to the window, pressed his or her forehead onto the glass, and watched the street. A line of grease ran across the entire length of the window.

Cleaning is difficult because there is no water on the sixth, seventh, and eighth floors of the hospital. Parents have to bring in water. But there aren’t many complaints, said Sara Ibrahim, executive director of Tesfa Addis Parents Childhood Cancer Organization, a group sponsored by Aslan to support families and children in treatment at the hospital.

Most parents are just thankful their children are able to get treatment, she said.  

***

Patients in the pediatric oncology unit on the seventh floor are usually newly diagnosed patients or being treated for complications, such as infection. Ibrahim said children with complications tend to stay in the free public hospital for about three to four months.

Stable patients receive chemotherapy at an outpatient cancer center a few minutes down the road from the hospital.

“We don’t have a lot of survivors, but it’s OK because we are helping children to have no pain through their treatment,” Ibrahim said. “Even if they die, they had a better quality of life. That’s what I keep saying. I explain that if this was not happening, imagine how the child would die.”

Ibrahim said not many children actually die in the hospital. They usually die when they stop treatment, go home, and do not return.

*** 

Drug shortages make it difficult to ensure a child is getting the proper medication.

Because the hospital does not have comprehensive documentation about patient drug dosages, physicians estimate their drug needs. That estimate goes to a drug procurement agency, but more often than not, the agency delivers about half the request.

“The agency says, ‘This is too much,’” Ibrahim said. “We can’t say we need more because it’s just an estimation.”

For six months, the hospital was out of mercaptopurine, an oral chemotherapy drug intended to lower the chance of the cancer returning. Patients in this maintenance phase, which lasts two to three years, take mercaptopurine daily, in combination with oral methotrexate weekly to ensure the cancer is gone.

“These are drugs that have been around since the 70s,” Muluneh said. “These are old and cheap drugs. These are not the fancy  targeted chemotherapy drugs.”

Muluneh said more than 90 percent of the doses need to be given for remission or the patient is at risk of recurrence or relapse.

“We can assume the patients were only taking methotrexate, but sometimes they’re out of that too,” Muluneh said.

And the hospital has a supply of Mercaptopurine for only three or four months, Ibrahim said.

The hospital is missing about 50 percent of patient paper medical charts — the one source of data that can establish a registry to support accurate drug procurement estimates.

It is against hospital rules, but parents take patient charts home and do not bring them back.

“It just becomes more and more complicated when you realize the challenges at the system level, like charts are going missing,” Buhlinger said. “That’s one of those barriers that you’re like, ‘Why?’ Just at minimum, having the charts to pull data from is essential.”

***

About 50 women, all in the same turquoise uniforms, huddled under the 9 a.m. sun outside the hospital. A few women sat on the edge of the sidewalk with their arms around each other’s shoulders. They all were calm.

The women, members of the hospital cleaning staff, were on strike. They had not been paid in three months and did not clean the hospital that morning, nor did they plan to clean it until they received their money.

The staff is employed by an agency, which is paid by the hospital. It was unclear whether the agency or hospital had not paid the salaries.

One woman, who wore a magenta headscarf embroidered with small pink flowers, said for the past three months, she had not been able to pay her rent or buy groceries. She said all the women, who worked 12-hour shifts, had families to care for and relied on the 1,300 birr a month, which is equivalent to about $45.

After several hours of protesting, the women got paid and cleaned the hospital by the end of the day.

“It’s not lack of money that caused that strike,” Muluneh said. “It’s just a lack of proper management, so looking at that whole systematic approach to the hospital is very important.”

When the pediatric cancer oncology unit at the hospital began several years ago, it was confined to a single room with only six beds. Dr. Daniel Hailu, who received training as a fellow for The Aslan Project and who became the first pediatric oncologist in Ethiopia, said it was common for about three children to die each week.

In the two weeks that the UNC pharmacists were there, no child died.

The unit has grown to 42 beds and there are now three hospitals in all of Ethiopia that care for pediatric oncology patients — soon four.

Hailu said although it will take time, the work of the visiting pharmacists will generate change within the hospital’s system. The hospital’s adult hematology department has started using an electronic medical record, and he said he hopes the pediatric oncology department can, too.

UNC’s influence in the hospital does not end with the registry project. The hospital signed a memorandum of understanding with UNC, and Muluneh said after the group returned, interest among other UNC faculty grew and the project expanded.

Now, faculty from the UNC Gillings School of Public Health and School of Medicine have joined the project to explore establishing a larger partnership with the Ministry of Health, Tikur Anbessa Specialized Hospital, and the Addis Ababa University to create a mutually beneficial relationship focused on patient care, research, and quality improvement.

Collaborators from St. Jude Children’s Research Hospital and the University of Rochester School of Medicine and Dentistry have also jumped in on the partnership.

***

In the taxi ride back to the hotel after a full day in the hospital, the pharmacists didn’t talk about the lack of water on the unit or the 3-year-old leukemia patient and his father whom the team had just witnessed. But it was all Muluneh could think about.

Once at the hotel, Muluneh told the team to meet back downstairs for dinner in an hour.

He went upstairs to his room, closed the door, and cried.

“We will never know if something happens to this child,” Muluneh said. “We will never know if it was a preventable or non-preventable death. For me, that’s why it’s so vital. The cost of this is (the child’s) life, so getting it right is very vital.”