Lack of antiepileptic drugs hurts awareness, treatment efforts in Zambia

The study, recently published in the American Journal of Tropical Medicine and Hygiene, was led by Gretchen Birbeck, an associate professor of neurology and ophthalmology and director for the International Neurologic & Psychiatric Epidemiology Program in Michigan State University's College of Osteopathic Medicine.

"We were horrified by what we found, not only in terms of availability but also of cost," said Birbeck, who has been studying epilepsy in Zambia for 16 years. "If the drugs aren't available, then it doesn't matter how successful the medical training or outreach efforts are."

The study was one project funded by a $1.4 million, five-year grant she has received from the National Institutes of Health to develop interventions aimed at overcoming the social and medical hurdles that impact epilepsy care in Zambia.

Epilepsy rates in Zambia are about 10 times what they are in the United States, possibly because of the disease's link to cerebral malaria, which is rampant throughout much of Africa. Among the pharmacies surveyed, 49 percent did not carry antiepileptic drugs, and adult out-of-pocket costs ranged from $7 to $30 in U.S. dollars, an immense cost to Zambians, most of who earn less than $1 per day. Pediatric syrups were universally unavailable as well.

"Despite the cost-effective nature of epilepsy treatment, less than 25 percent of people with active epilepsy in the developing world -- where about 80 percent of people with epilepsy live -- are receiving treatment," Birbeck said.

She said that during the study and interviews with pharmacists, several barriers were discovered to getting drugs to those who need them:

• In 2007, the World Health Organization began encouraging pharmaceutical regulatory authorities in low-income countries to more strictly enforce existing regulations related to the handling of scheduled drugs such as phenobarbitone. Phenobarbitone is the most affordable, first-line antiepileptic drug. An unintended result of the crackdown appears to be that many pharmacists found it too tedious to try stocking the drug. As a result, supply dropped and costs soared.
• Some pharmacists noted the sale of antiepileptic drugs was unpredictable, therefore many of the drugs expired, making it financially harder on the pharmacies to keep current stocks up.
• Many of patients also have far distances to travel and little money, providing even fewer incentives for pharmacies to carry drugs that many people cannot afford.

Birbeck said these hurdles can frustrate health care workers, who feel their hands are tied.

"Obviously, the need to balance drug availability with proper regulatory oversight is a difficult one," she said. "But the lack of trained pharmacists we found also suggests that the human resources for appropriate management of prescription drugs are limited."

Regardless, Birbeck said, social programs such as the World Health Organization/International League Against Epilepsy's "Out of the Shadows" campaign to encourage people with epilepsy to seek care must be preceded by improved access to drugs.

"It's wrong for us to use community-based programs to encourage people with epilepsy to come forward if they cannot get the medicine they need," she said.

Birbeck said the study's results are re-organizing the priorities of her NIH grant project.

"We are working with the Zambian Ministry of Health, trying to improve access to drugs and educating health care workers," she said. "These steps need to be completed before we move forward."

Birbeck partnered with researchers from the University of Zambia, Chainama Hills College Hospital in Zambia and the country's Ministry of Health.