Friday, January 21, 2011

National Policy; key in reducing Sickle Cell disorder burden

There is no gain saying that Sickle Cell Disorder (SCD), is a global health problem with psychosocial implications. This is due to the fact that despite the large number of people with SCD, the Nigerian society in general still has a negative image of SCD and reported negative perceptions and attitudes. This has in turn, created a scenario whereby those who cater for sufferers are faced with the burden of providing adequate care and support.

However, with the incidence of sickle cell anaemia in the country which is estimated at 150,000 births annually, survival of Nigerian children beyond childhood have largely depended on their access to appropriate care. And because most of them are born into poor under-privileged families, very few of them survive childhood.

In view of this starring reality, health experts in the country have tasked health authorities in the country to develop a well-resourced national policy and increased awareness which is believed would curtail the dissemination of unbiased public information and education about the disorder.

In a recent interview with BusinessDay, Olu Akinyanju, Chiarman, Sickle Cell Foundation revealed that the nation has the nation has no exact record of citizens suffering from the disorder in contrast to advanced countries of the world like the United States of America and United Kingdom.

This, according to him, has made it impossible for the country to provide for the needs of the patients in spite of the fact that the nation has the largest burden of the disorder in the world. Akinyanju stated that those with the disease suffer a higher than average frequency of illness and premature death, especially in infancy.

In his words “some of the challenges facing sickle cell patients in the country include the absence of dedicated sickle cell clinics in many hospitals across the federation, lack of funding for provision of healthcare to indigent patients, poor funding for capacity building, research and patient care as well as deployment of appropriate personnel and facilities in the nation’s infrastructures.”

He maintained that the Nigerian Sickle Cell Expert Advisory Committee has made important recommendations for improving the uniformity and standard of care delivered to patients, saying the implementation of the recommendations should significantly reduce avoidable illness and deaths among the affected people and thus, improve their quality of lives and average life expectancy.

For her part, Torinola Femi-Adebayo, Senior Medical Officer, Sickle Cell Foundation, noted that low level of awareness on SCD is fueling the misinformation, inappropriate treatment, frustration and stigmatisation. Femi Adebayo stated that the reason is that the affected children rarely survived childhood, and were, therefore, less likely to be encountered in secondary schools, universities and in the workplace.

According to her “having sickle cell disease means a lifelong battle against the health problems it can cause, such as pain, infections, anemia, and stroke. But many people are able to have a very good quality of life by learning to manage the disease. The sickling occurs because of a mutation in the haemoglobin gene.

“The most common signs and symptoms are linked to anaemia and pain while other signs and symptoms are linked to the disease’s complications. The pain from sickle-cell crisis can be acute or chronic, but acute pain is more common. Almost all people who have sickle-cell anaemia have painful crisis at some point in their lives. Your risk for a sickle-cell crisis increases if you are dehydrated, when your body does not have enough fluid. Drinking plenty of fluids can lower your risk for a painful crisis.

With SCD been a genetic disorder associated with excruciating pain, which occurs in different periods, there is the need for proper medical interventions in place to ensure sufferers don’t pass through trying times before accessing medical attention.

For Akinyanju, “The recommendations include the introduction of newborn, or at least, infant to screening for sickle cell disorder to enable early diagnosis. This is done in England and America not only for sickle cell, but also for other conditions. It also includes the training and development of a cadre of sickle cell specialist nurses in order to increase access to well-informed health workers.”

“Don’t forget that the average life expectancy of sickle cell patients in America rose to 53 with commensurate improvement in their quality of life due to their greater annual investment in sickle cell care which is higher than the average life expectancy of all Nigerians which currently stood at 47,” He concluded.

Lending his view, Olarewanju Ekujimi, National President, Association of Resident Doctors added that “regular checkups are an important part of life with this disease. People with sickle cell disease need a good working relationship with a doctor who is an expert in treating it. This is borne out of their painful episodes which sets off occasioned by high altitude, cigeratte smoke, etc. Also, since people with sickle cell disease and their families face ongoing stress, a support network can help ease stress and worry.”

Alexander Chiejina

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