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Touch A Cell

A candle loses none of its light by lighting another candle!

One day in a year is certainly not enough to celebrate the courage of patients, educate the population and create awareness of a disease that has deeply entered the nation. Almost every family has a story.

Nnamdi’s birth was celebrated with pomp and pageantry. By the age of three, he had made so many rounds to the hospital that his parents lost count. One day, his parents traveled to the city with him and he had a seizure and was hospitalized. It was then that his parents realized that the union of AS and AS gave birth to SS.

Fola and Aminu knew they were both carriers, yet their love for each other was so strong that all warnings fell on deaf ears. After 10 years of marriage and two child burials, they individually began to question whether love is stronger than the pains of grief.

Ajadi enjoyed good health until an ulcer in his old age caused him to visit the hospital. There he was tested and told that he was “sick”. Since the types of symptoms described were foreign to him, doctors began to question him about his diet. Ajadi from Ekiti for most of his life ate more yam for breakfast and pounded yam for lunch. His diet only recently changed causing the breakdown of his immunity. From the research that was done, it was discovered that Yam has anti-fake agents and because it is natural it has little or no side effect. Ugwu has also been discovered to produce iron and increase blood count. So, what magic can a diet of yam and ugwu (small portion) do to an anemic patient?

Nigeria is blessed with many natural and human resources meant to sustain us, unfortunately these resources are not well researched nor medicinal properties of herbs and foods are utilized for maximum benefit.

Ignorance of the sickle cell anemia gave birth to more patients. According to Deaconess Toyin Adesola, author of Still Standing, whose parents although medical personnel – a surgeon and a nurse – married despite both having the AS genotype, “My parents married in the 60s and there was hardly anyone who knew about the SCA then . . . A lack of information and education about the transmission, effects and management of the s-cell continues to cause many to regret advocating the love amendment.

A few years back, Ms Funke Akiyode, the Founder of Shout Global Health Inc, attended a Sickle Cell Conference in Baltimore where she met a man she identified as “Baba”. Baba, who was then in his sixties, came to share a rare herbal recipe that became a saving grace for children living with s-cell in his community. Not too long after, Baba moved on to the great beyond, but not without passing the recipe on to his children. Not finding the $3M needed for Research and Development (R&D), Baba’s children sold this miraculous recipe to business-savvy Indians. The Indians not only started the R & D, they, based on a pact and the need to be close to the botanical properties, located the factory in Nigeria. True or False; this is said to be the story that gave birth to Nicosa.

The commissioning of the Xechem factory by President Olusegun Obasanjo was done amid a media frenzy. Commercial production started in 2006 but the drug which was sold for N3, 000 ie $20 was of course unaffordable for the average Nigerian.

But the originally indigenous Nicosan (Hemoxin in the US) formerly known as Niprisan and Nix 0699, which was researched by the National Institute of Pharmaceutical Research and Development (NIPRD) became a miracle drug by preventing informed and economically able s-cell patients from pain and from making monthly rounds to the hospital for transfusion or the like thus leading them to live normal lives. Unfortunately the medicine has become inaccessible due to the production stop order.

Many questions come to mind – Why was the original herbal recipe sold? For how much? Why did plans to have Xechem on the US Stock Exchange fail? Why did Xechem USA file for bankruptcy? Has Xechem Nigeria actually lost its manufacturing license? How deep was the research into mass production of the drug? Why was the factory located in Nigeria? Answers may loom for years as many souls continue to languish in excruciating pain causing many deaths around the world, but the most important question we must answer now is, why has production stopped and how can we start production to save lives?

A joint loan awarded by NEXIM, Diamond Bank and Bank PHB fired the production of the drug by Xechem Nigeria but the delay in repayment caused the grantors to reconsider their investment leading to the production embargo.

With the embargo on Nicosan production, more Nigerians abroad living with the s-cell have turned to Hydroxyuleria – a drug for cell abnormal diseases like leukemia – which increases the production of fetal hemoglobin, needed to rejuvenate red blood cells. Although Hydroxyuleria works for some, it has so many side effects including the potential to increase cell growth which can lead to cancer.

In a spirited letter to NEXIM, Diamond Bank and Bank PHB – Mrs. Tosin Ola, a self-described sickle cell warrior wrote, “Last month, I ran out of Nicosa. Now I am in the same boat as my friends, waiting for the worst crises to descend on me like a ghost of doom. I’m afraid of getting sick again, I’m afraid of having to go to the hospital because sickle cell patients are dying in hospitals from ‘disease-related complications’ at an alarming rate. Not just here in the US, but in Bahrain, Nigeria, India , Jamaica and Brazil. There is a huge stigma that exists for anemic patients around the world, and every time we pass through a hospital, we are playing dice. with death. Why would you allow that to be our fate?”

I wonder why those in the corridors of power would continue to stand idly by while our human resources are daily depleted by a disease that can be managed with locally produced medicine. It is unfortunate that foreign bodies are more concerned with health-related issues, which explains why initiatives for the eradication of Polio, prevention of HIV/AIDS, etc. are usually externally driven.

The good news is that Xechem Pharmaceuticals’ short-term plans include the closure of the New Jersey Headquarters to minimize operating costs and the resumption of production in Nigeria.

June 19 is World Sickle Cell Awareness Day, an event that commemorates the date in 2008 when the United Nations General Assembly adopted a resolution recognizing sickle cell anemia, one of the world’s leading genetic diseases, as a concern on public health. The day gives everyone, especially activists and the media, an opportunity to educate people, create awareness and potentially remove harmful prejudices about the disease. The disease has severe physical, psychological and social consequences for those affected and their families.

The World Health Organization estimates that Nigeria has 7 million people living with SCD and that SCD contributes to 5% of the deaths of children under the age of 5 in some African countries. While an increasing proportion of affected children now survive beyond the age of 5, many remain at risk of premature death. With early detection and use of public health interventions such as penicillin, many of these deaths can be prevented. Additionally, the burden of this disease can be reduced with increased global resources and effective partnerships.

Our government and indeed the health sector must seek greater collaboration to facilitate access to information, education, communication, management and treatment of anemia. Increase research to determine prevalence of SCD, develop better management guidelines and more effectively monitor complications of the disease. There should be a proactive attitude towards the improvement of proper management of sickle cell anemia to reduce mortality from related diseases. International institutions, development partners, civil society and corporate bodies should be encouraged to support health systems and primary health care.

So how can you celebrate the day: Create awareness especially through social media. Have a presentation at your place of worship. Partner with NGO and Civil Society. Educate someone or provide a free information brochure. Encourage people to get screened for the trait, donate blood or donate money to sickle cell research. Organize a benefit program or media event. Lobby legislators to come up with policies that support the establishment of free clinics for poor patients. Support a patient or parent. Take a moment to reflect and pray.

SCD is an inherited group of red blood cell disorders. In people living with SCD, “sickle” or abnormally shaped red blood cells get stuck in small blood vessels and block the flow of blood and oxygen to organs in the body. These blockages can cause repeated episodes of severe pain, organ damage and serious infections, or even stroke. SCD affects millions of people worldwide and is particularly common among blacks.

The specific aim of the theme of World Sickle Cell Awareness Day 2011 – Educate and Unite – is to achieve the Millennium Development Goal 4 of the United Nations ie to reduce child mortality by 2015.

Mrs. Tosin Ola gave a charge: “The power of intercessory prayer and shared global awareness is real, so please lift up all our brothers and sisters. So many of us are in failure, in pain or in the hospital, and we could all use some best wishes and love.”

To all our loved ones living with the s-cell, I admire your courage and I pray that God strengthens you mentally to survive the anemic cell. Together we can change the face of sickle cell.

Anne Muyiwa is Project Director of Cares Global Network. This article also appeared in Punch Newspapers of 22.06.11.

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