A candle loses none of its light by lighting another candle!
One day in a year is definitely not enough to celebrate the courage of patients, educate the populace and create awareness about a disease that has eaten deep into the fabric of 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 travelled to the city with him and he had a seizure and was hospitalised. It was then that his parents realised that the union of AS and AS birthed 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 burials of offspring, they individually began to wonder whether love is stronger than the pangs of mourning.
Ajadi enjoyed good health until a sore in his old age led him to visit the hospital. There he was tested and told he is a “sickler”. Since the kinds of symptoms described were alien to him, doctors began to question him about his diet. Ajadi from Ekiti for most of his life had eaten more of yam for breakfast and pounded yam for lunch. His diet only recently changed leading to the breakdown of his immunity. From the research that was conducted, it was discovered that Yam has anti-sickling agents and because it is natural it has little or no side effect. Ugwu was also discovered to produce iron and increase blood count. So, what magic can a diet of yam and ugwu (small serving) do to an anaemic patient?
Nigeria is blessed with many natural and human resources meant to sustain us, unfortunately these resources are not well researched neither are medicinal properties of herbs and foods harnessed for maximum benefit.
Ignorance about the sickle cell anaemia has birthed more patients. According to Deaconess Toyin Adesola, author of Still Standing, whose parents though medical personnel – surgeon and nurse – got married despite both having the AS genotype, “My parents got married in the ’60s and there was hardly anybody that knew about the SCA then.” Lack of information and education about the transmission, effects and management of the s-cell continue to lead many to regret pleading the love amendment.
Some years back, Ms. Funke Akiyode, the Founder of Shout Global Health Inc, attended a Sickle Cell Conference in Baltimore where she met with a man she identified as “Baba”. Baba who was then in his sixties had come to share a rare herb recipe that has become a saving grace for children living with the s-cell in his community. Not too long thereafter, Baba transited to the great beyond, but not without passing on the recipe to his children. Not finding the $3M required for Research and Development (R & D), Baba’s children sold this miracle recipe to business savvy Indians. The Indians not only got the R & D underway, 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 birthed Nicosan.
The commissioning of the Xechem factory by President Olusegun Obasanjo was done amidst a lot of media bling-bling. Commercial production began in 2006 but the drug which was sold for N3, 000 i.e. $20 was of course not affordable to the average Nigerian.
But the originally indigenous Nicosan (Hemoxin in US) formerly known as Niprisan and Nix 0699 which was researched by the National Institute for Pharmaceutical Research and Development (NIPRD) became a miracle drug having prevented informed and economically capable s-cell patients from pain and from making monthly rounds to the hospital for transfusion or the likes thus leading them to live normal lives. Unfortunately the medication became inaccessible due to the stop order on production.
Many questions come to mind – Why was the original herbal recipe sold? For how much? Why did plans to have Xechem on the American Stock Exchange fail? Why did Xechem USA file for bankruptcy? Did Xechem Nigeria actually lose their production license? How thorough was the research towards mass producing the medication? Why was the factory located in Nigeria? Answers may loom for years as many souls continue to languish in excruciating pain leading to many deaths across the globe but the most important question we need to answer now is, why was production stopped and how can we commence production to save lives?
A jointly awarded loan by NEXIM, Diamond Bank and Bank PHB fired the production of the drug by Xechem Nigeria but the lingering of payback made the grantors reconsider their investment leading to the embargo on production.
With the embargo on Nicosan production, more Nigerians abroad living with the s-cell have turned to Hydroxyuleria – a drug for cellular abnormality diseases like leukemia – which increases the production of fetal haemoglobin, needed to rejuvenate red blood cells. Though Hydroxyuleria work for some, it has so many side effects including the possibility of increasing cell growth which may lead to cancer.
In a spirited letter to NEXIM, Diamond Bank and Bank PHB – Ms. 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 the evil crises to descend on me like a specter of doom. I am afraid of falling sick again, I am afraid of having to go to the hospital, because sickle cell patients are dying in hospitals from ‘sickle cell related complications’ at an alarming rate. Not just here in the United States, but in Bahrain, Nigeria, India, Jamaica and Brazil. There is a huge stigma that exists for sickle cell patients around the world, and every time we pass through a hospital, we are playing dice with death. Why would you allow this to be our fate?”
I wonder why those in the corridors of power would continue to stand akimbo while our human resources are depleted daily due to a disease that can be managed by a locally produced drug. It is sad that foreign bodies are more concerned about 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 short term plans by Xechem Pharmaceuticals include the closure of the New Jersey Headquarters to minimise operations cost and the resumption of production in Nigeria.
June 19 is the World Sickle Cell Awareness Day, an event that commemorates the date in 2008 when the General Assembly of the United Nations adopted a resolution recognising sickle cell anaemia, one of the world’s foremost genetic diseases, as a public health concern. The day affords everyone especially advocates and the media an opportunity to educate people, create awareness and possibly eliminate harmful prejudices about the disease. The disease has severe physical, psychological and social consequences for those affected and their families.
The World Health Organisation estimates that Nigeria has 7 million people living with SCD and that SCD contributes to 5% of the deaths of children below aged 5 years in some African countries. While an increasing proportion of affected children now survive past 5 years of age, 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 need to seek greater cooperation to facilitate access to information, education, communication, management, and treatment for sickle-cell anaemia. Increase research to determine prevalence of SCD, develop better management guidelines, and more effectively monitor complications of the disease. There should be a pro-active stance towards the improvement of proper management of sickle-cell anaemia to decrease mortality from related diseases. International institutions, development partners, civil society and corporate bodies should be encouraged to support health systems and primary health-care delivery.
So how can you commemorate the day: Raise awareness especially via social media. Have a presentation at your place of worship. Partner with NGO and Civil Society. Educate someone or provide free information pamphlet. Encourage people to get screened for the trait, donate blood or donate money to sickle cell research. Organise a benefit programme or media briefing. Lobby legislators to come up with policies that support the establishment of free clinics for indigent patients. Support a patient or parent. Take a moment to reflect and to pray.
The SCD is an inherited group of red blood cell disorders. In people living with the 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 throughout the world and is particularly common among blacks.
The specific aim of the 2011 World Sickle Cell Awareness Day theme – Educate and Unite – is to achieve the United Nations Millennium Development Goal 4 i.e. to reduce child mortality by 2015.
Ms. Tosin Ola gave a charge: “The power of intercessory prayer and a shared global consciousness 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 some well wishes and love.”
To all our loved ones living with the s-cell, I admire your courage and I pray God strengthen you mentally to outlive the anaemic 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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