The National coordinator of Association of People Living with Sickle Cell disorder, APLSCD, Aisha Maureen Edward has advocated that only those specialists who are trained specifically for particular health conditions be allowed to run health-related NGOs, especially Sickle Cell disorder, while bewailing the intrusion of unethical persons parading as NGO officials and defrauding those of them that have health challenges.
She made this known during a meeting with the Chief Medical Director of Nnamdi Azikiwe Teaching Hospital, Nnewi today alongside other medical specialists who have a stake in Sickle Cell Disorder, at the hospital’s board room, Nnewi.
Aisha went ahead to debunk the rumours making rounds that she was fighting NGOs so that her association would be the only one that would be managing Sickle cell patients while maintaining that she would not even be able to manage all the Sickle cell cases at hand.
She however maintained that she was only against the fraudulence and exploitations that had been the order of the day under the guise of Sickle cell oriented NGOs, while citing several cases whereby NGOs and medical doctors and some even use the name of the government to hoodwink and swindle Sickle Cell Disorder patients.
She went ahead to enumerate some of the challenges APLSCD still encounters, while recommending some measures the medical specialists could employ in order to aid the association in her move to improve the lot of Sickle cell patients.
The coordinator frowned at the exorbitant cost of medical management of Sickle cell patients, citing that even some medical consultants in government who own private hospitals as some of those that collect exorbitant medical rates from her members, while relating such as the reason for self-medication which is not right.
Aisha observed that the high cases of drug addiction amongst Sickle cell patients is as a result of the pain crisis they experience frequently, while sharing that after she got rehabilitated from her own drug addiction bouts, she discovered that it was the psychological therapy she received that played the primary role of rehabilitating her.
She therefore prayed that the Medical Director looked into assigning student psychologists to carry out their internship with Sickle Cell patients. In her words, “Our members suffer rejection, inferiority complex, dejection, low self esteem, stigmatization, especially from their parents.”
She added that the psychological solace APLSCD get in pockets are from clergy men which she said the clergy men offer for free, while calling on the government to support such helpful clergymen, and in the same vein cited the need for chaplains from the different denominations to be attached to the association.
Aisha also cited Mobility given their peculiar health conditions; living quarters for the patients, given their peculiar need for privacy; and the shaky relationship with the state government which was as a result of the activities of those who due to personal and political reasons, have been painting the association in a bad light.
She finally tendered her appreciation to the hospital management for their hospitality.
In his response, the Chief Medical Director of Nnamdi Azikiwe Teaching Hospital, Dr Igwegbe Tony applauded what he referred to as an expose that is evidence that her passion for the Sickle Cell cause.
In his words, “the issues you raised are quite pertinent issues which are quite understandable and demand urgent attention.”
He, flanked by his company of specialists, brainstormed and came up with a procedure that would be employed to assist the operation of the Sickle Cell Specialist Clinic at their outstation in Ukpo.
The team proposed to start holding weekly medical management sessions for the Sickle cell patients which would be holding side by side with the organisation’s meeting which will include psychological therapy.
The CMD also announced that all of APLSCD identity card bearing patients would be given instant treatment while holding the relationship with the association in good faith to handle the bills.
Registering the association with NHIS was also proposed to help ameliorate the cost of medical management.
On that note it was revealed that the hospitals are yet to start offering comprehensive care for sickle cell disease is a multiple disciplinary care, which includes obstetricians, gynaecologists, surgeons, excetera.
Highlights were handing over the gifts of Portrait of the CMD, complimentary copies the Sickle Cell handbook and newspaper publications on Association of People Living with Sickle Cell Disorder to the CMD and his team by Aisha Maureen Edward.
Amongst the medical experts present were Professor Ifeoma Modebe, the Consultant Public Health Physician; Dr Okocha E.C, Consultant Haematologist, Dr. Aneke J.C, Consultant Haematologist (Head, Haematology department); Okafor Nkiru, Chief Medical Laboratory Scientist; Ezigbo Franca, Senior Administrative Officer; Nwegbu Chinwe, Chief Nursing Officer; and Ezeji James, Administrative Officer.