By Augustus Bill:
The repeal of the Anambra State Sickle Cell Law may be approaching the dawn of reality following the events of the Public Hearing organised by the house committee on Health at the State Assembly.
The Public hearing was an avenue to elicit the opinions of stakeholders on the way forward for the sickle cell Law aimed at protecting the rights of persons living with sickle cell disorder.
Speaking during the hearing, Lady Adaora Ngozi Iloanusi Onyeyili, the Director of Nursing Nnamdi Azikiwe Teaching Hospital noted that one important factor was missing in the already proposed amendment. She argued that Nurses were the most frequent and first healthcare givers of persons living with the disorder, and it will be a grave mistake to omit the nurses in the new sickle cell Law.
Hon. Charles Ezeani, the member Representing Aniocha 2 Constituents At the State Assembly, and the sponsor of the bill lamented on the essence of the sickle cell Law, which will go a long way in protecting the rights of persons living with the disorder that had hitherto been trodden upon by the society. He further said that having lost a close family to Sickle cell, he understands the trauma and stress families pass through when they birth a sickle cell child, which could have been averted.
According to him, the sickle cell Law when repealed will go a long way in curbing the incessant rise of the disorder in the country.
Rev. Fr. Cosmos Ebebe, a Catholic priest and former chairman of NIPR, argued on the lines of education and sensitization is necessary tools for reducing the proliferation of the disorder. He posited that genotype education be introduced in all high schools, and that the APLSCD sickle cell booklet in circulation be approved for secondary schools, as it will make the students conscious of the disorder and it’s consequences, thereby putting into consideration when making decisions of the opposite partners.
The Anglican Archbishop of Aguata Diocese, who was represented by Rev. Cannon Maduka prayed the house to expedite the process of the law, as more lives have been lost in the process. He cited different cases of neglect by the society on persons living with the disorder, one was when a person living with the disorder was denied access to her parents properties because it was presumed that she was closer to death and shouldn’t be left in custody of those properties. The Archbishop said these excesses of neglect and sheer wickedness on persons living with the disorder can be reduced with the emergence of the sickle cell Law.
Other stakeholders who aired their opinions at the Public hearing towed different paths of why the law is necessary. However, the hematologists at the public hearing towed an opposite direction arguing that the law was unnecessary and should not be allowed to see the light of the day.
Prof. Okpala, a hematologist with UNTH Enugu and his Colleagues Dr. IFEOMA Ajuba of NMA Anambra State and Dr Okocha of NAUTH argued that a law as The Sickle Cell Law will be an Arbitration of the Human Rights of the Citizens. They argued that incompatible Genotypes can get married out of choice, and a family can give birth to as many Sickle Cell children as possible. He said that giving birth to a sickle cell child is not a crime and no law should be made to prohibit persons with incompatible genotypes from Getting married.
The assertions of the hematologists flared up the hearing as it was perceived as not only baseless and selfish but also Inhumane and should not be coming from healthcare givers themselves.
The first reaction came from Hon. Dr. Okafor, the house committee chairman on health Anambra State Assembly, he argued that as much as citizens have the right to make choices that pleases them, the unborn child should also be accorded his or her own rights, since it’s the unborn child that suffers the consequences of the choices of the parents. Thus, a sickle cell Law protects both Persons living with the disorder and those yet unborn.
Prof. Stella Okunna, Dean Faculty of Social Sciences UNIZIK who spoke as a Communicator, argued that no amount of excuse Would be enough to allow the birth of a Sickle Cell child, as the child from birth is Brought into untold pains, stereotypes and neglect by the society and sometimes by the parents. She said it will be very wicked and inhumane to justify the birth of a sickle cell child, and urged the house to ensure that the sickle cell Law sees the light of the day.
Rt.Rev. Dr. Paulinus Ezeokafor, the Catholic Bishop of Awka Diocese, represented by the APLSCD chaplain, Rev. Fr. Barr. Obiora Okeke pointed that The assertion of the hematologists was Clear evidence of the neglect being complained by Persons living with the disorder. He Hinted that such words coming from healthcare givers themselves were enough reasons to expedite the process of enacting the sickle cell Law, to protect the rights of persons living with the disorder and those yet unborn.
Rev. Fr.Barr. Okeke also noted that the clergy plays a Chunk Role in the psychological management of persons living with the disorder, as they serve not only as spiritual advisers but also as psychologists for the Persons Living with the Disorder, and that makes it very necessary that the Clergy be included in the Monitoring team after the bill is passed. According to him, the sickle cell Law will save more innocent lives that are Constantly maimed by The neglect of some healthcare givers, as Shown by some of the hematologists at the Hearing.
Prof. Ifeoma Modebe, HOD. Public Health NAUTH And Dr.John Aneke, HOD Haematology Department Nnamdi Azikiwe University Teaching Hospital pointed out the Welfare and Psychological Management as a great factor in the management of persons living with sickle cell disorder, as such Management will help them cope with the Stereotypes and neglect they receive from the Society. They Proposed that the law Creates a room to include provision of Psychological centres For persons living with the Disorder to avoid further frustrations and Stigma attached to the Disorder.
Hon. Obinna Emenaka, House Committee Chairman on Finance and Budgeting , Anambra State 6th Assembly noted that proper budgeting and allocation be done to enhance to effectiveness of the provisions of the law when passed.
HRH, Engr. S. Okafor, traditional ruler of Okpuno town and Deputy chairman Anambra State Traditional Rulers council who spoke on behalf of traditional rulers praised APLSCD for her exploits in the fight against the disorder. He prompted the house to include in the law that couples present their genotype certificates before traditional marriages, as that will further enhance chances of eradicating the disorder.
Aisha Edward, the National coordinator of the Association of Persons Living with Sickle Cell Disorder Expressed Joy at the Outcome of the public Hearing, which she said edged the fruition of the sickle cell Law closer. She appreciated the The Speaker of the Anambra State Assembly and her Intelligent Legislators for her doggedness in ensuring that the Sickle Cell Law is passed, and also in a special way thanked The sponsor if the bill, Hon. Charles Ezeani who she described as a dogged fighter,Brilliant and humble Legislator whose unrelenting struggles to ensure the passage of the Law has endeared APLSCD to immortalizing his Noble Move in Setting them Free from Societal Oppression.
She however, did not Fail to express her Shock and Disappointments at the assertions of most of the Hematologists Present. She described their actions as selfish, and unprofessional. She Said they were the reasons sickle cell continues to thrive in the country.
For hematologists to vehemently oppose The law that protects the rights of persons living with sickle cell disorder, it goes a long way to show how Corrupt and Dirty our health system is. These are persons we call our Fathers and Mothers, but just this one time we call then to speak for us, they Abandon us. They want Sickle Cell to Continue in the country because they know their Businesses thrive on our misfortune, and that’s where selfishness and Wickedness is seen at the highest Degree, She said.
Aisha further said that same Hematologists whom APLSCD had Always trusted with their lives subtly Connive with fake and quack health Personnel to constantly maim the lives of persons living with sickle cell disorder, using the guise of having a cure for the disorder, when it is widely known that the only known cure (stem cell) is under test Stage, not existing in Nigeria and Outrageously costly. She said they use them as specimens to taste their fake drugs and Sell our blood Sample to the Foreign Organizations like UN, WHO, UNESCO in exchange for Foreign Donors for Endless Research.
She, however, pleaded on the House to expedite action in the process of Making the Bill a Law and Save Anambra State Citizens and good image from the High Profiled Heath Sector Disgusted Looters from maiming more Life through its Treasury.
The hearing attracted dignitaries from different works of life including the Clerk of the State House of Assembly, Speaker of the house who was duely represented, Representatives of the CMD Odumegwu Ojukwu Teaching Hospital, PGs of various towns and representatives of the State Ministry of Health.