COMMUNIQUE FROM THE VIRTUAL TOWN HALL MEETING ORGANISED BY SICKLE CELL FOUNDATION NIGERIA TO MARK THE 2024 WORLD SICKLE CELL DAY

EVENT: A Virtual TownHall Meeting to Amplify the Voices of Sickle Cell Warriors and Explore Collaborative Strategies to Change the Narrative Around Sickle Cell Disorder in Nigeria

Theme: Sickle Cell Disorder: A National Emergency

Date: Thursday, June 20th, 2024

Venue: Zoom, FaceBook, Instagram, YouTube, X and Mixlr

Stakeholders Present

• Sickle cell community
• Persons living with sickle cell disorder and their families and friends
• Caregivers
• Health workers
• Government
  • Fed Min of Health & Social Welfare
  • Lagos State Ministry of Health
  • Delta State
• WHO
• NCD Alliance
• GANSID
• Private sector
• Religious community
• Advocacy groups
• Donor partners (Pfizer, Healing Blends,
• NGOs/ Advocacy groups
  • Coalition of Sickle Cell NGOs
  • O5 Initiative
  • Nig Heart Foundation
  • Sickle Cell Support Society of Nigeria
  • Medical Women’s Association of Nigeria

Chairman of Town Hall: Professor Adekunle Adekile – Professor of Paediatric Haematology, Kuwait University, Kuwait

Moderator: Dr. Titilope Fasipe – Assistant Professor of Pediatric Hematology and Oncology at Baylor College of Medicine

Panelists:

• Dame Edith Okowa: Former First Lady, Delta State & Founder, O5 Initiative; she established 23 SCD clinics in Delta State
• Alayo Sopekan: Deputy Director, Fed. Ministry of Health, Nigeria
• Abosede Wellington: Desk Officer, SCD Programme, Lagos State Ministry of Health
• LAYCON– Person living with SCD, Musician, Celebrity influencer, Sickle Cell Ambassador
• Professor Adeyinka Falusi– Professor of haematology and Founder, Sickle Cell Hope Alive Foundation (SCHAF)
• Bukola Bolarinwa: Person living with Sickle Cell, Lawyer, Advocate, President, Sickle Cell Aid Foundation (SCAF) and founder of Haima Health Initiative.
• Annette Akinsete: Consultant Public Health Physician & National Director/CEO Sickle Cell Foundation Nigeria

IT WAS AGREED AS FOLLOWS:

1. Sickle Cell Disorder (SCD) is a national emergency
2. SCD is our heritage (Nigeria’s)
3. SCD is our legacy (Nigeria’s)
4. SCD is not a death sentence; persons with SCD can live normal, long, productive lives and contribute meaningfully to their communities
5. It is not all doom and gloom for SCD; there is light at the end of the tunnel; the future is bright for persons with SCD:
   • There are advances in treatment and cure
   • Newer drugs
   • Non-pharmacological aids for pain management (eg art in medicine)
   • Gene therapy
6. Still, it is not all rosy; living with SCD is challenging
7. Some things about SCD are out of our hands; eg, the clinical manifestations in some patients is very severe, and yet mild in some others.
8. Sickle Cell control efforts in Nigeria are fragmented and largely carried out in silos.
9. Sickle Cell Foundation Nigeria (SCFN) is not a government entity; it is a non-profit, NGO, which is involved in all areas of sickle cell programming – advocacy, research, prevention, treatment, care, welfare and cure.
10. SCFN works in public private partnership with government
11. SCFN is 30 years this year 2024, having been established in 1994
12. Ignorance about the inheritance or genetics of SCD is still pervasive in the community; for instance, the “1 in 4” chance usually taught about inheritance scenario in a couple with SCD trait, is often incorrectly thought to mean that in a family of 4 children, 1 child must have SCD.
13. Every child living with SCD should be on hydroxyurea
14. Everyone should know their genotype
15. Our medical laboratories need to be accredited for accurate genotype
16. FMOH and some states (eg Delta State) have commenced Newborn screening programmes for SCD
17. Healthy lifestyle is vital for SCD warriors – balanced diet, exercise, routine medications and medical checks
18. Development of the mind/mental capacity helps warriors cope with stigma and discrimination
19. Persons with sickle cell in Nigeria pay out-of-pocket for their drugs and treatment; this contributes to high morbidity and mortality
20. Stem cell transplantation (CURATIVE THERAPY for SCD) is available in Nigeria – in Benin City and now, the BMT Centre newly established by Sickle Cell Foundation Nigeria in partnership with Lagos University Teaching Hospital and international partners. However, it is noteworthy that, while it is fitting that BMT is available in Nigeria – the country with the highest burden of SCD in the world, BMT remains a very expensive procedure and not every patient with SCD is a good candidate for BMT
21. The SCFN/LUTH BMT Programme has finally taken off with 2 patients lined up for admission this month. They will be in isolation for 1 month, then in General ward for 3 months. They will be discharged after about 100 days. It has taken this long to commence because the team, led by our Visiting Consultant is laser-focused on QUALITY & SAFETY.
22. There is no Federal law that restricts couples with SCD trait from marrying. A couple of states have such legislation

RECOMMENDATIONS & CALL TO ACTION:

• Government commitment & political will are essential for Sickle Cell control in Nigeria
• But government cannot do it alone; there must be Partnerships and collaborations for sustainability of SCD programmes
  • Global partnerships (as outlined in SDG #17)
  • Partnerships within Nigeria
  • Public-Private Partnerships
  • Private sector (banks, oil companies, etc should be brought on board for sustainable funding of SCD programmes)
  • Religious communities (churches, mosques, etc)
  • Non-profits
  • Grant-making bodies
• OUT-OF-POCKET payments for treatment (daily routine meds, blood transfusion, tests, etc) by SCD warriors must stop!…through the following:
  • Enacting appropriate laws – that are comprehensive and cover care of persons with SCD
  • Health care financing initiatives
  • Health Insurance
  • Partnerships as outlined above
• ADVOCACY:
  • Call on Sickle Cell warriors: Warriors need come out of despair and out of the shadows;  out of their shells to overcome stigma and discrimination.
  • SCD warriors must be their own advocates; they are their best advocates; they should organise themselves and accomplish their goals
• We must build Capacity of all healthcare professionals in order to position them with skills to manage SCD effectively
• Newborn screening must be implemented nationally – adapted to suit our local situation
• Community education about SCD should be prioritised
• Development of Mental Fortitude, Positive attitude & Spirituality should be included in the Comprehensive Care for SCD
• Early Diagnosis and Early Management must be incorporated in Comprehensive care package – to reduce morbidity and mortality and increase life expectancy
• MULTISECTORAL COLLABORATION: Borrowing from the HIV/AIDS Programme, each sector will bring to bear, their own area of expertise or competence – for a holistic SCD control programme
• THE WAIT-LIST INITIATIVE OF SICKLE CELL FOUNDATION NIGERIA: SCFN has come up with an initiative that will help solve the OUT-OF-POCKET EXPENSES problem that our persons with SCD suffer:
  • This initiative will ensure treatment and care of warriors in a sustainable manner.
  • Basically, EVERY SICKLE CELL WARRIOR IN ANY PART OF NIGERIA WITH ANY TREATMENT NEED, WILL BE ENROLLED IN A WAIT-LIST DATABASE.  Eg:
    1. LEG ULCERS REQUIRING DAILY WOUND DRESSING
    2. DEGENERATION OF THE HIP JOINT REQUIRING HIP REPLACEMENT

• STROKE REQUIRING REHABILITATION

1. DAILY ROUTINE DRUGS
2. HOSPITAL ADMISSION EXPENSES

• Partnerships and Collaborations will be sought from the Private sector – banks, oil companies, churches and other religious bodies, grant-making organisations, international & bilateral organisations, etc
• Every geo-political zone of the country will be covered
• Details of this Initiative will be rolled out soon