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  • Sufferers urge progress on sickle cell drug Nicosan

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Sickle cell anaemia sufferers are appealing to Nigerian banks to take steps to allow production of a crucial drug to be resumed in the country.

One million sufferers from the painful genetic disease were said to have been benefiting from the drug, Nicosan (niprisan) for several years after a traditional treatment was brought into commercial production by the firm Xechem International.

But the factory closed nine months ago and now supplies are exhausted.

"This remedy changed my life," said Tosin Ola, a US-based advocate for sufferers from the disease, who had used the drug since 2007. She has written an open letter, for which she is collecting signatures, to three banks.

"Before Nicosan, I was in and out of the hospital on a monthly basis, having to have regular blood transfusions, countless IV [intravenous] sticks and daily pain. But, once Nicosan started working for me, the daily pain ceased and I have not been admitted into the hospital since 2008," she said.

"The sad part is that people are dying every day and suffering needlessly in pain, while the treatment — that is all natural, with no side effects and very effective — is nowhere to be found, because of some paper-pushers.

"Nigeria has the highest population of sickle cell patients in the world ... It is criminal that you have the power to cause so many people to suffer and that you do it so heartlessly and thoughtlessly, especially since God, and NIPRD [Nigeria's National Institute for Pharmaceutical Research & Development, which originally developed the drug], has given you the ability to make this painful nightmare a thing of the past."

"Dust gathers at the Xechem factory that could be our salvation ... equipment to manufacture Nicosan [is] rusting wastefully away while you sit behind your desk ignoring all attempts to put this matter to rest," says the letter.

The banks —Bank PHB, Diamond Bank and Nexim — control Xechem's Nigerian subsidiary following the company's failure to repay loans it obtained from them.

Niprisan is based on extracts from West African plants known to a Nigerian family which made a pioneering agreement with NIPRD, widely cited as a case study in "benefit sharing" — allowing local groups to have a stake in the profits from commercialising indigenous products.

The licence to produce the drug was subsequently bought by Xechem International, which held it for six years — during the last few of which it was dogged by allegations of fraud and mismanagement.

The Nigerian government withdrew Xechem's licence in 2009 and the government took over the company, which was then liquidated. There have since been several efforts by both Xechem and fresh investors to take over the company and recommence production.

Recently Xechem International filed US$25 million suit against the Nigerian government for withdrawing its licence, but a court dismissed the case.

The receivers also filed a suit trying to prevent the government from giving production rights to another company.

Karniyus Shingu Gamaniel, director general of NIPRD, which the government said last year would take over production, told SciDev.Net: "The minister has constituted a committee to resolve all the issues to ensure that when production resumes there will be no drawbacks.

"The committee is to look into all the court suits and counter suits and ensure it is all resolved and a competent company appointed to manage the production," he said. "This is a process that has to be carefully managed and hopefully in the next two to three months production may resume."

Link to full open letter

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