Uganda Govt. Can't Check Nodding Disease So Victims Turn To Herbalist

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Alfred Ojara says as long as children from his home district are suffering, he will continue to treat them – regardless of what authorities say.

[Global: Africa]

PADER, Uganda---Alfred Ojara is an unassuming man--in his demeanor, not his words. 

Armed
with nothing but a clear plastic bag of light brown powder and a spoon
to dole it out, he says he has been able to relieve painful symptoms
where government-provided drugs have failed.  
 
“I am now paving the way to alleviating these diseases,” the herbalist said.  
 
For
the past 20 years, Ojara says he has been curing his home district in
Pader of various ills. From malaria, meningitis, to malnourishment, he
says his herbs have worked wonders – restoring appetite, ridding
patients of fevers, and more. 
 
His claim to cure Nodding Disease  -- not verified-- is what's gotten him the attention of the authorities. 
 
While
some local officials have been known to visit him for treatment
themselves, others have threatened to have him thrown in jail. 
 
“He
is a criminal,” said Dr. Bernard Opar, the Ministry of health (MoH)
coordinator for Nodding Disease. “He’s extorting money from people and
he doesn’t know what he is treating.” 
 
Ojara says he usually
charges Shs 2,000 to Shs 5,000, or the equivalent of less than $1 U.S.
 to about $2 U.S. for a treatment; and that he has never received more
than Shs 10,000, for a group, or about $4.  
 
He says he adjusts
his fees depending on how poor the family is – those worst affected by
the disease are in the poorest, most rural areas of northern Uganda. 
 
Last
month, the herbalist visited the children of Ojuru village in Pader for
a group treatment. Children were brought to see him from surrounding
huts in varying conditions – some were frail and weak, and succumbed to
the disease’s debilitating seizures.  
 
Some look no different
from a healthy child. But a handful of children in the small crowd
gathered around the man with a cure – and one by one, were given a
concoction of the ground root of a local vine mixed with water. 
 
This
is not the first time Ojara has treated children from this village.
Charles Okumu says his daughter recovered from the disease after a
treatment from the herbalist last year – though he had also taken her to
a clinic months earlier, and couldn’t be sure which to thank.  
 
Regardless,
it’s been more than six months that she’s been well – making a
remarkable comeback from the desperate spouts of delirium and physical
disability, he says. “When food was brought she could not even raise her
hand to collect it,” Okumu said. 
 
Today, the girl is back in school; she is running and playing with her friends in the fields.  
 
It’s
enough for him to have passed on the word to his neighbors, who haven’t
seen the government drugs work for their children, and are desperate
for a miracle of their own. 
 
Nodding syndrome is a progressive
disease that attacks with seizures; it's normally characterized by an
uncontrollable nodding of the head. The disease ultimately renders
children physically and mentally disabled; it is fatal for most. 
 
“It
has reached the point where she doesn’t know anything, she cannot even
understand,” says Margaret Atto of her 12-year-old daughter Stella. 
 
For
Stella, it was four years of Western medicine, with no change. Atto is a
widow and has no one to help her take the child to hospital or care for
her at home. Even when she went to the hospital, she could spend more
than six hours waiting for a few tablets. 
 
“Any health center does not help with this sickness,” her mother said. “I am stranded.” 
 
Many
people from this heavily affected village have tried health centers,
but are finding Ojara’s cure treats their children’s symptoms just as
well – without the grueling journey. 
 
Nathan Onyachi, director
of the region’s referral hospital, says without better success of
finding a cure itself, government cannot stop traditional healers from
trying to do the same. 
 
“Nodding disease is still quite a new field, everybody is there to try his magic,” he said. 
 
“When you’re not yet an authority, then you cannot stop others from doing what they want.” he added. 
 
“There
is no law in Uganda which stops him from practicing,” said Ambrose
Sabiti, the police commander for Pader district, referring to Ojara.
“But if his claims stop a government program – that’s when he conflicts
with the law.” 
 
If police find the evidence of extortion or that
Ojara has been endangering lives, Sabiti says this would be his first
time to arrest a traditional healer. The healers is often trusted by
residents of the area, and seen as a cheap and accessible option that is
already the first choice for up to 70 percent of the population.  
 
The
Ministry of Health actually has a research arm into herbal medicine.
The Natural Chemotherapeutics Research Laboratory (NCRL) in Wandegeya
has performed a toxicity test on Ojara’s drug in 2011, and deemed it
safe.  
 
The lab has recognized the potential benefits of working
with traditional healers in the past – whose herbs have been found to
ease a host of symptoms, such as fever and even sexual impotence in the
past.  
 
In terms of reach, they are miles ahead. The NCRL
estimates that while there is one healer for roughly every 300 people,
while there is only one trained medical personnel for every 20,000. 
 
The
formula is being worked on by Health Ministry is known as MONI B/4 with
identification code number NCRL/CH/08/081 that is given by the
herbalist in a dose of 3.5gram to 4grams depending on weight for five
days. 
 
Diseases are more often than not treated by a combination
of the two methods – and this relationship can go one way or another.  
 
Onyachi
cites traditional bonesetters as being the most troublesome for
hospital staff – patients often come in with fractures after being
treated by them, and have to be refractured or can end up lame. 
 
As
the number of children with Nodding Disease continues to climb, so has
criticism of the government’s response. Some estimate the true number of
children affected to be closer to 7,000, and suggest the government is
stifling the districts from releasing a true picture, as it would force
funding they don’t have. 
 
“I wouldn’t want to say that the
government has the accurate figures as such, because there hasn’t been
any significant funding directly into Nodding Disease,” Dr. Onyachi
said. 
 
Government has committed nearly Shs 7billion to relieving
Nodding Disease over the next two years, half of that is to be used in
this year’s “emergency phase”, which consists of providing medication,
food, psychosocial and livelihood support – among others.  
 
Specialized
treatment centers in the three most affected districts – Pader, Kitgum
and Lamwo – were only set up in March of this year. They see hundreds of
patients a day, and continue to prescribe the recommended treatment of
anti-epileptic drugs. Some food has been provided as well, but anything
beyond that has been patchy, with outreach taking the hardest hit –
vehicles were only provided last month. 
 
“If somebody cares to
take these people for regular treatment, the medicine is available,”
says Dr. Onyachi. “It’s those ones who go off treatment and are not
monitored.” 
 
Onyachi cites the effective communication system
used in HIV/AIDS treatment. The huge swell of funding into that field
has allowed for a network that Nodding Disease now needs to model. 
 
"We
have to create a system of communication – either using the village
health teams, the community health workers, using the telephones that
are now so prevalent – to follow up on these patients,” he said. 
 
“And this is being done with HIV/AIDS because there is money, in Nodding Disease there is no money to do that.” 
 
Government
is now facing two separate lawsuits for failing to mount an effective
response, one of them from Beatrice Anywar, the opposition politician
who has been spearheading the campaign against the government. 
 
“Most of these children are in their homes and cannot leave – government is not doing outreach,” she said. 
 
Nodding
Disease coordinator Opar responds to the challenge in a rush: “People
are talking about outreaches, outreaches, outreaches. You know sometimes
I also ask myself – if you are sick, why would you sit and wait for
somebody to come and treat you?” 
 
For Pamela Atim, a widow, it
is because her 15-year-old daughter has had the disease for more than
half of her life. She has never been to school because of it. She cannot
walk on her own and a trip to the health Centre would take more than a
day – Atim had to guide her just 20 feet from their hut on the day they
saw the healer. 
 
"I don’t even know how to ride a bicycle, it was my late husband that used to carry us to the health center,” she said. 
 
Ojara
says as long as children from his home district are suffering, he will
continue to treat them – regardless of what authorities say. 
 
“You
are being mocked, you are being kicked like a ball in the football
field,” he says of the treatment he has received at times for his claim
to a cure. Even his own children do not believe in his work, but still
he carries on. 
 
“I should be with the people, down there.”



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