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Touch A Cell
A candle loses none of its light by lighting another candle!
One day a year is definitely not enough to celebrate the bravery of patients, educate citizens and create awareness about a disease that has deeply etched itself into the fabric of the nation. Almost every family has its own story.
Nnamdi’s birth was celebrated with pomp and pageantry. By the time he was three, he had been to the hospital so many times that his parents lost count. One day his parents traveled with him to the city and he had a seizure and was hospitalized. Then his parents realized that the union of AS and AS was born SS.
Fola and Aminu knew they were both carriers, but their love for each other was so strong that all warnings fell on deaf ears. After 10 years of marriage and two burials of offspring, they individually began to wonder if love is stronger than the pain of grief.
Ajadi was in good health until an old age wound forced him to visit the hospital. They tested him there and said he was “sick”. Since the described symptoms were foreign to him, the doctors began to question him about his diet. Ajadi from Ekiti has eaten more yams for breakfast and battered yams for lunch for most of his life. His diet has only recently changed which has caused his immunity to drop. From the research that has been done, it has been found that Yam is anti-itch and because it is natural, it has little or no side effects. Ugwu has also been found to produce iron and increase the number of blood cells. So what magic can a sweet fruit and ugwu (small portion) diet do to an anemic patient?
Nigeria is blessed with many natural and human resources that are meant to sustain our lives, but unfortunately these resources have not been well explored nor have the medicinal properties of plants and foods been utilized for maximum benefit.
Ignorance of sickle cell anemia has given birth to more patients. According to Deaconess Toyin Adesola, author of Still Standing, whose parents, although medical staff – a surgeon and a nurse – married despite both having the AS genotype, “My parents got married in the 60s and hardly anyone knew then for SCA.” A lack of information and education about s-cell transmission, effects, and management continues to cause many to regret committing to the Love Amendment.
A few years ago, Ms. Funke Akiyode, 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 lifesaver for children living with s-cell in his community. Not long after that, Baba passed on to the beyond, but not without passing on the recipe to his children. Failing to find the $3 million needed for research and development (R&D), Baba’s children sold this miracle recipe to business-savvy Indians. The Indians not only initiated the research and development, but based on the pact and the need to be close to the botanical properties, they located the factory in Nigeria. Truth or lie; this is the story that gave birth to Nicosan.
The commissioning of the Xechem plant by President Olusegun Obasanjo was done amid much media bling-bling. Commercial production began in 2006, but the drug, which sold for N3,000, or $20, was of course not affordable to the average Nigerian.
But the original domestic Nicosan (Hemoxin in the US) formerly known as Niprisan and Nix 0699 researched by the National Institute of Pharmaceutical Research and Development (NIPRD) became a miracle drug that kept informed and economically viable s-cell patients out of pain and going to the hospital monthly for a transfusion or similar, which leads them to a normal life. Unfortunately, the drug has become unavailable due to a production stop order.
Many questions are asked – Why was the original herbal recipe sold? For how much? Why did the plans for Xechem to be on the American stock exchange fail? Why did Xechem USA file for bankruptcy? Has Xechem Nigeria actually lost its manufacturing license? How thorough was the research aimed at mass production of the drug? Why is the factory located in Nigeria? The answers may be looming for years as many souls continue to languish in excruciating pain leading to many deaths around the world, but the most important question we must answer now is why is production stopped and how can we restart production to save lives?
A joint loan granted by NEXIM, Diamond Bank and Bank PHB started the production of the drug Xechem Nigeria, but the protracted return made the providers reconsider their investment leading to the production embargo.
With the embargo on Nicosan production, more Nigerians abroad living with s-cells have turned to Hydroxyuleria – a drug for diseases of cellular abnormalities such as 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 possibility of increased cell growth which can lead to cancer.
In a spirited letter to NEXIM, Diamond Bank and PHB Bank – Mrs. Tosin Ola, a self-described sickle cell warrior, wrote: “Last month I ran out of Nicosan. Now I am in the same boat as my friends, waiting for evil crises to descend upon me like a specter of doom. I’m afraid of getting sick again, I’m afraid I have to go to the hospital, because sickle cell patients are dying in hospitals of ‘sickle cell complications’ at an alarming rate. Not only here in In the United States, but also in Bahrain, Nigeria, India, Jamaica and Brazil. There is a huge stigma that exists for sickle cell patients all over the world and every time we walk through a hospital we are playing dice with death. Why would you let this be our fate? “
I wonder why those in the corridors of power would continue to stand by while our human resources are depleted daily due to a disease that can be treated with a locally produced medicine. It is sad that foreign bodies are more concerned with health related issues, which explains why initiatives to eradicate polio, prevent HIV/AIDS, etc. are usually led from outside.
The good news is that Xechem Pharmaceuticals’ short-term plans include closing its New Jersey headquarters to reduce operating costs and restarting production in Nigeria.
June 19 is World Sickle Cell Awareness Day, an event marking 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 public health problem. The day offers everyone, especially advocates and the media, an opportunity to educate people, raise awareness and possibly remove harmful prejudices about the disease. The disease has serious physical, psychological and social consequences for patients and their families.
The World Health Organization estimates that Nigeria has 7 million people living with SCD and that SCD contributes to 5% of deaths among children under 5 in some African countries. While an increasing proportion of affected children are now surviving past 5 years of age, many are still at risk of premature death. With early detection and the use of public health interventions such as penicillin, many of these deaths are preventable. Additionally, the burden of this disease can be reduced by increasing 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 sickle cell disease. Increase the number of studies to determine the prevalence of SCD, develop better treatment guidelines, and more effectively monitor the complications of the disease. There should be a proactive attitude towards improving the proper management of sickle cell anemia to reduce mortality from associated diseases. International institutions, development partners, civil society and corporate bodies should be encouraged to support health systems and the provision of primary health care.
So how can you mark the day: Raise awareness, especially through social media. Have a presentation at your place of worship. Partnership with non-governmental organizations and civil society. Educate someone or give out a free information brochure. Encourage people to get tested for the trait, to donate blood or money for sickle cell research. Organize a charity event or media briefing. Lobby legislators to create policies that support the establishment of free clinics for poor patients. Support the patient or parent. Take a moment to think 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 the body’s organs. 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 goal 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, i.e. to reduce child mortality by 2015.
Mrs. Tosin Ola said: “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 down, in pain or in the hospital, and we could all use good wishes and love.”
To all our loved ones living with s-cell, I admire your courage and pray to God to give you the mental strength to outlive anemic cell. Together we can change the face of sickle cell.
Anne Muyiwa is the Project Director of the Cares Global Network. This article also appeared in Punch newspaper dated 22.06.11.
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