Priorities

The Steering Committee meeting was held on the 12th of January 2011 at the New Chelsea Hotel in Abuja. The minutes of the meeting were circulated to all members including those who were absent at the meeting. There have been some suggestions, which have either been incorporated or we intend to pursue. While the minutes are hereby attached , I want to stress on what our immediate priorities should be. These are predicated on the objectives of the Network and on the proposed Working Groups for which co-chairpersons were suggested at the meeting. Anyone who is interested in joining any of the groups, especially because they have expertise in the area, should please contact me or any of the co-chairpersons.

  1. Registration.  (Co-Chairs – Dr.  Funke Lawson and Mrs. Badiya Inuwa)
    1. It is difficult for us to operate as a corporate entity with the rights to raise funds and act as a recognized advocacy group without being officially registered with the relevant Nigerian authorities. For this purpose too, a constitution has to be put together to accompany any applications to be submitted. Dr. Baba Inusa promised to provide a constitution being used by a similar professional group with which he is associated as a framework for ours. Whoever else has other suggestion in drawing a constitution or has an inside track to the relevant agencies in Abuja (that can facilitate registration) should please contact either of the 2 co-chairpersons or myself.
  2. Website (Co-Chairs Baba Inusa and Kunle Adekile)
    1. We need to establish a website to provide a forum for interacting with members of the network and others who might be interested in what we are doing. We need to design a logo that will go with the site. Anyone with ideas should liaise with Baba.
  3. National Sickle Cell Disease Policy (Co-Chairs Dr. Obiageli Nnodu and Baba Inusa)
    1. The Federal Ministry of Health is putting together a national policy on non-communicable diseases under which sickle cell disease falls. Drs. Nnodu and Lawson served on the committee that put the policy together. We need to follow up on this effort to ensure that sickle cell disease is well addressed in a comprehensive fashion.
  4. Education, Guidelines and Protocols (Co-Chairs Drs. Iheanyi Okpala and Olu Olujohungbe for adults. Drs. Magi Odunvbun and  Kunle Adekile (Paediatrics)
    1. There is a need to streamline available materials on education, counseling and management guidelines/protocols such that there is a uniform standard for the whole country. Professor Akinyanju has lots of materials in this area, which hopefully will serve as good resources.
  5. Research. We have to come up with well-thought out, written fundable proposals of relevance to the Nigerian context and some of the priority areas and the co-chairpersons identified are below. I am certain and confident that we shall procure funding for these, depending on how well they are presented.
    1. Infections ( Drs. Olatunji and  Stephen Obaro)
    2. Hydroxyurea (Drs. Sagir and Kunle Adekile)
    3. Natural History (Drs. Bunmi Akinola and Kassim Adetola)
    4. Phenotypic Characteristics/Diversity ( Drs. Yinka Falusi and Kunle Adekile)
    5. Ethnopharmacology (Drs. Idowu Aimola and Agbedahunsi). I would like to have suggestions about who within and outside  the country can join Dr. Aimola in this most important group. These should be persons with laboratory facilities for qualitative and quantitative analysis of drug extracts. We need to screen as many of the products being marketed or touted for SCD within the country as possible.
  6. Newborn Screening (Co-Chairs Drs. Angela Okolo and Baba Inusa)
    1. This group should articulate the projected needs for newborn screening in the country, how far this has gone and how to integrate it into the public health system, such that the patients identified can be properly followed in a comprehensive manner.
  7. Capacity Building
    1. While this was not specifically discussed at the meeting, it is one of the main objectives of the network to encourage the training of junior individuals to develop clinical, laboratory and other skills that will further the other objectives of the Network. In this regard, we encourage our Diaspora members in particular to source for training opportunities for up and coming Nigerian doctors, nurses, laboratory technologists and others.
  8. Funding (Mrs. Hajiya Inuwa and Dr. Suzzette )
    1. We are getting to the stage where we have to raise funds to carry out and sustain the activities of the network. We all have to come up with ideas in this regard. As mentioned earlier, fund raising will be easier and facilitated by early registration of the Network as a corporate entity.
  9. Trustees (Dr. Angela Okolo and Kunle Adekile)
    1. It was agreed that we need to identify prominent, respectable Nigerians and sympathetic foreigners who should be invited to serve as trustees to the Network. This is also necessary for registration purposes. Some of the names that were suggested at the meeting are shown below, but the list is not exhaustive and more names can be suggested.

i.      Nanadi Usman

ii.      Dr. Christopher Kolade

iii.      Alh Aminu Dantata

iv.      Dr. Funmi Olopade

v.      Princess Sheikha Al-Sabah – Kuwait

vi.      Professor  Akenzua

vii.      Prof. Abba Sagoe

viii.      Professor Azubuike

I will be in touch with all the co-chairs and encourage the groups to get to work. They can co-opt other members as they see fit and I will expect that within the next few months they can present a working paper and subsequently a detailed plan of action. The aim is to produce a proposal that can be presented to funding agencies. Hopefully before the end of the year we can organize a meeting of the co-chairs in Nigeria to deliberate on the plans. I am open to suggestions on how to proceed.