Newswise — With a countrywide prevalence of 0.98%, more than 2.2 million people have epilepsy in Pakistan. A 1987 population-based study estimated Pakistan’s treatment gap at 72.5% in urban areas, and 98.1% in rural ones.
Clinicians in Pakistan have worked consistently, with strategies large and small, to chip away at the country’s epilepsy treatment gap. “We had been working sporadically since 1985,” remembered Zarine Mogal, president of the Pakistan ILAE chapter. “We started sustained activities in 2001, with a goal of reducing the treatment gap by 50%.”
To manage the activities, the Comprehensive Epilepsy Control Program of Pakistan was established—a non-governmental organization that includes the National Epilepsy Centre in Karachi, as well as Epilepsy Support Pakistan, which conducts public awareness and epilepsy education activities. The two parts work together, often overlapping.
After five years of sustained efforts, a population-based study found that in urban areas of Pakistan, the treatment gap had dropped from 72.5% to 25%. “That was beyond our expectations,” said Mogal.
Later, to bolster the survey findings, the group analyzed data on anti-seizure drug sales between 1998 and 2018. They found a 15.6% annual growth rate in sales, as well as significant growth in drug manufacturing.
In hindsight, the effort to reduce the treatment gap can appear painstakingly planned, like the blueprints for a shopping complex or a neighborhood. But the secret of Pakistan’s success is not rooted in elaborate planning. Nor did it rely on consistent, generous funding, or following designated steps. The secret is not much of a secret at all, really; it merely combined three components that predict success in almost any venture:
Start small. Be flexible. And never give up.
Begin with a leader
To begin, said Mogal, you need a leader. Someone well established, professionally respected, and motivated to take on the challenge with no promise of success (and no remuneration).
In Pakistan that person is Hasan Aziz, past president of Pakistan’s ILAE chapter and professor emeritus of neurology at Jinnah Postgraduate Medical Centre, Karachi. “Professor Aziz has been working on issues in epilepsy for decades, and had a vision,” said Mogal.
Aziz’s leadership led to the creation of a core group of 25 to 30 neurologists, trainees, paramedics and other staff. They met, brainstormed ideas, planned activities and gave hours of their time to the various projects.
The pervasive hands-on attitude was an important factor, said Mogal. “Professor Aziz and other professors, they were out there with us, and that motivated us,” she said. “It is inspirational to other volunteers, as well as the public. They were not giving orders; they were doing things.”
Hitting the bullseye
Aziz and others had done studies in the 1980s on public knowledge and attitudes surrounding epilepsy. “The studies helped us,” said Mogal. “You don’t necessarily need to do that in order to start addressing the treatment gap, but if you have that information, it makes it easier to hit the bullseye.”
The research made it clear that in Pakistan, the treatment gap was primarily determined by the public perception of epilepsy, which is seen as a spiritual illness. So the team began trying to change that perception.
“The first step was sensitizing people—giving them a message about what epilepsy was,” said Mogal. “We started in one area of Karachi, then expanded. We would plan out one project or one activity and float the idea to philanthropists associated with us.” Most of the support came from pharmaceutical companies.
“Our simple message was that epilepsy is a medical disorder,” said Mogal. “We didn’t talk about it as causing death, because we knew if we told people they could die from it, they wouldn’t bother seeking help—they would think ‘I’m going to die, so why should I get treatment?’ So we presented it in a positive light: We said that 70% of epilepsy can be treated with medicines, so go seek help from a doctor.”
Getting the message out
Once the message was established, the group found multiple ways to spread it.
They printed thousands of red-and-white stickers and pasted them on cargo trucks, intercity buses, oil tankers, ambulances, and other vehicles that traveled long distances. Each said: “Epilepsy is a treatable medical disorder. It is not caused by evil spirits, djinns, witchcraft or other such causes. For diagnosis and treatment, contact your doctor.”
“Truckers and these other groups have associations, so we would talk to them and convince them to put our stickers on their trucks,” said Mogal. “It usually didn’t matter to them--our trucks and minibuses are already colorfully painted and people write poetry on them. Once we convinced the groups it was a noble cause, they did it.”
The group put the message on billboards. They printed the message on roadside banners, painted the message on bridges (graffiti is acceptable in Pakistan), and engraved the message on thousands of ballpoint pens. Because kite flying is a popular activity in Pakistan, the group also printed the message on kites, which were used at competitions and activities around the country. “Wherever the kite would fall, people would see the message,” said Mogal.
A public face for epilepsy
In addition to the core group of volunteers, it’s important to have a public face of epilepsy that the public can related to, said Aziz. “There has to be someone who is respected and can represent,” he said.
In Pakistan, the first person to take on this role was Abdu Sattar Edhi, a renowned philanthropist and humanitarian who publicly announced he had epilepsy in 2003. “He was in the league of Mother Teresa,” Mogal said of Edhi, who died in 2016. Edhi’s foundation, now managed by his family, runs the country’s volunteer ambulance network, as well as orphanages, homeless shelters, rehabilitation centers and animal shelters across Pakistan.
Edhi’s involvement helped raise public awareness and reduce stigma. It also attracted volunteers to the team’s ongoing efforts and encouraged others to speak out. At least two other well-known Pakistanis also have gone public about their epilepsy:actress Nadia Jamil and performer Suhaee Abro.
Using existing infrastructure
As another part of enhancing public awareness, Aziz, Mogal and their team carried out in-person educational activities out at 18 schools in Karachi. They soon realized that this strategy was not providing a good return on investment. Instead, they created and printed more than 45,000 copies of a poster with information about epilepsy. Because the literacy rate in Pakistan is low, the poster uses mostly colorful illustrations, rather than words.
The posters were distributed to schools and other public places around the country, including some no-go areas that were off-limits to in-person educational activities.
The team then harnessed the power of Pakistan’s health care infrastructure, which includes 100,000 female health workers. The workers are assigned to a specified area in which they travel house to house, talking to residents about their health and providing certain types of care.
“We did a one-hour training [with the health workers] which included a lecture and some documentaries about epilepsy, to help them understand that it’s a medical disease that doesn’t require spiritual treatment,” said Aziz. “The health workers are very well accepted and respected, and a lot of people follow their advice. So we have a trained force of workers who can be tapped to help raise awareness and encourage people to seek treatment.”
Once the awareness activities took hold, the group planned week-long epilepsy awareness “camps” around Pakistan. For six days, non-medical volunteers ran public awareness activities in a specific district. Medical volunteers held workshops for primary-care physicians and final-year medical students. “Along with sensitizing the public, we wanted to make sure the local doctors knew what to do,” said Aziz.
On the seventh day, a free clinic was held by volunteer neurologists who had traveled from Karachi. “If there was no hospital in the district, we would set up in the most prominent clinic,” said Mogal. “The volunteer team would fly out every other weekend to staff one of these clinics.”
Over five years, the epilepsy weeks were held in 69 of Pakistan’s 141 districts. The efforts resulted in more than 12,000 evaluations for epilepsy and nearly 8,000 new diagnoses.
“This was a very effective way of raising awareness,” said Aziz. However, security concerns in Pakistan and the heavy time commitments on volunteers forced the team to discontinue these efforts.
So the team changed direction. How else could they raise public awareness? What infrastructure could they take advantage of?
Success through television
“Television is the most common mode of entertainment in Pakistan,” said Mogal. “It goes into the rural areas and the no-go areas; it taps into communities in Pakistan as well as expats who subscribe to Pakistani channels.”
The group developed a documentary about epilepsy, helping people to understand what happens in the brain and why medicine is necessary. Abdul Sattar Edhi narrates.
Initially, some television stations broadcast the documentary at no cost. “But of course then, you get very sporadic broadcasts whenever they can fit it in,” Mogal said. “So we edited it down to about 90 seconds and paid for it to be shown close to prime time. It was shown twice a day for 3 months, cycling through the provinces, dubbed in the local languages.”
According to market data from television stations, said Aziz, the documentary reached 110 million people, many more than once and many outside Pakistan. “I had a patient who had been living in the United Kingdom for the past 20 years,” he said. “She thought she was receiving monthly visits from a djinn. She saw the documentary and traveled to Karachi to see us about her seizures.”
The team also appeared multiple times on television programs to talk about epilepsy. “Last year on Epilepsy Day we did an interview, and I was walking out of the TV station afterward and got a message from a friend in Washington,” said Mogal. “’You were on television!’ she said. She watches that station every night, so she saw me.”
The documentary is on YouTube, and the group uses Facebook and Instagram as well.
“You have to go where the people are,” said Mogal. “You have to formulate indigenous projects, which will vary from country to country.”
Words of wisdom
Go your own way. Each country must formulate customized programs with its culture and population in mind, said Mogal. “The television program was effective here, but it might not be in other countries,” she said. “Some of the things we did might sound ridiculous to people in other countries, but they have worked for us.”
Take one thing at a time. Funding ongoing activities can feel overwhelming, but the team managed by seeking funding only after they had a project in mind. The philanthropic culture of Pakistan was to their advantage—it’s considered one of the most generous countries in the world.
“Especially in the health field, there are many private organizations that help out,” said Mogal. “You have to convince the philanthropists, but there are people who will help you. Having said that, the amount of donations for epilepsy is a drop in the ocean compared with other medical conditions.”
Avoid bureaucracy. The team eschewed government involvement; they created the NGO in 2001 and conducted all activities under that umbrella.
“The bureaucratic approach is not successful,” said Aziz. “For bureaucrats, epilepsy is not a priority. They only make things more difficult.”
Don’t overplan. “The effort must be open ended and not closed ended, with lots of flexibility,” said Mogal. “This might sound very idealistic or unusual, especially for developed countries. They may have a specific program they follow, with steps and timelines, but that is not possible in Pakistan.”
Never give up. Sometimes the team would go quiet for a few months due to lack of funding, lack of time, or volatile conditions. But they never stopped completely.
“If you need to take a break, keep doing small things to keep epilepsy in people’s minds,” said Mogal. “Maybe a morning interview on the radio, or small activities in different areas. If we stay motivated, that motivation gets passed on.”
Start where you are. “You have to go with the flow, and do whatever is possible, or at least start it, with whatever means you have,” said Mogal. “Do whatever you can, with whatever you have, wherever you are.”
Founded in 1909, the International League Against Epilepsy (ILAE) is a global organization with more than 120 national chapters.
Through promoting research, education and training to improve the diagnosis, treatment and prevention of the disease, ILAE is working toward a world where no person’s life is limited by epilepsy.