Visits, medicines, tests and admissions that generated a record or payment.
Interactive companion · Komla Amega & Larry Ajuwon
Investing in Access
Sickle Cell Care as an Entry Point for Blood-Health Systems in Africa
A guided way to understand the argument, challenge the evidence, explore where access breaks down, and ask what financing should actually build.
01 · Reveal
The burden depends on what we count
In the same 2021 Global Burden of Disease analysis, SCD accounted for an estimated 34,400 cause-specific deaths, but 376,000 total SCD-related deaths when its contribution to deaths assigned to other immediate causes was included.
2021 · Same study
34.4k
cause-specific deaths
376k
total SCD-related deaths
02 · See hidden need
Before seeing the evidence, make a judgement
What share of children born with SCD in sub-Saharan Africa do you think die before age five?
40%
Published estimates
Older synthesis
50–90%
Nigeria model
49%
MIDAS
36.4%
Kilifi cohort
29%
Lock in your estimate to reveal the comparison.
Why the range is wide
The studies use different periods, populations and methods. The paper treats the spread as a measurement gap rather than a settled continental mortality estimate.
Spending can hide need too
What formal expenditure does not show
Tests, medicines or visits delayed or skipped because of cost, distance or time.
Screening, prophylaxis, hydroxyurea, blood services or follow-up.
Workforce, laboratories, referral, supply, data and financial protection.
03 · Explore access
A treatment works only if people reach it and stay in care
Connect the evidence streams
Access intelligence
One real-world signal
Kilifi: clinic attendance was associated with much lower mortality
Children attending a clinic offering folic acid, penicillin prophylaxis and malaria prophylaxis had mortality of 2.9 per 100 person-years versus 10.4 among non-attenders.
Interpret carefully
Uyoga et al. (2019). Observational comparison: attendance may partly reflect family, geographic or other differences. The result supports continuity-of-care as an access question; it should not be converted directly into a predicted mortality effect for a financing model.
Deaths per 100 person-years, children under five
Where can continuity break?
04 · Match investment
Mechanisms answer where money comes from. They do not decide what it should buy.
Function
| Source | Possible role | Fit |
|---|
Illustrative discussion aid — not an allocation rule or investment recommendation.
Classification challenge
Where would you place this?
Item 1 of 6
Why this is useful
Choose a layer. Some items are genuinely arguable; disagreement is part of the exercise.
05 · Test a scenario
Access is a chain. Attrition compounds.
This model shows how many children in an annual SCA birth cohort remain after successive access steps. It does not estimate deaths averted, cost-effectiveness or national impact.
Discussion input; Nigeria estimate ≈150,000/year
Foundational public function
Referral + service capacity
Continuity
Medicines + routine care
Treatment continuity indicator
Cost assumptions
Sets how many newborns must be tested to find one case
Delivered cost per child screened: $3.67–5.88 for the laboratory method (Mvundura et al., 2019). The test itself now carries a $1.00 ceiling price for low- and middle-income countries (CHAI, May 2025), so delivered cost is falling toward that floor
Bed net $10, proguanil $17.48, penicillin V $29.93, folic acid $0.95. First-year pneumococcal vaccination adds $80.64
identified
linked to care
retained 12 months
receiving basic package
with uninterrupted HU
of SCA birth cohort receiving basic package
What this costs
total a year
of it is screening
per child reaching the package
Screening cost falls on every newborn tested, not on the small number who test positive, so it scales with the whole birth cohort. Kuznik et al. (2016) costed universal screening plus prophylaxis at roughly US$136 million a year for Nigeria, in 2014 dollars and before point-of-care testing. Figures here exclude the cost of building screening capacity in the first place, and exclude hospital care for crises. Note also that this is a single-year snapshot, so screening dominates: each child is screened once but takes the package every year. Over a childhood the two are closer — Kuznik put the lifetime prevention package at US$876 against roughly US$500 of screening per case found at 2% prevalence.
The funnel
What this model assumes
Each percentage is applied sequentially to the prior stage. Real pathways are not independent; patients may re-enter care and coverage varies by geography. Outputs are arithmetic scenario results, not forecasts.
06 · Discuss
Turn exploration into a decision conversation
What you explored
First-phase measures · September 2026
1,915 / 5,000Registry enrolmentApril 2026
Baseline TBDScheduled follow-upContinuity
Baseline TBDPain crises / admissionsClinical burden
45 monthsMean age at first diagnosisMarch 2024 · n=1,373
Baseline TBD12-month HU continuityTreatment access
What the paper asks for
Adopt access measures with published baselines
Diagnosis before the first birthday, completion of scheduled follow-up, and uninterrupted access to hydroxyurea — in national SCD strategies and newborn screening plans, rather than counting activities alone.
Fund the baselines
At least one high-burden country should establish them as a costed first-phase deliverable, so later investment can be judged against something.
Match financing mechanisms to a pathway
RemitAid, HealthBridge and similar diaspora and pooled mechanisms need a defined clinical pathway and a registry able to report against it before a benefit package can be priced or held to account.
Each can be taken up independently by any government, funder, patient organisation or diaspora partner already working in this field.
Evidence, definitions and limits
Access intelligence: registry, service, patient, cost and capacity information assembled to show where access fails, why it fails and what needs strengthening.
Foundational public functions: screening, registries, standards, workforce, referral and related functions with broad system benefit and weak private incentives to supply them adequately.
Shared infrastructure: laboratories, diagnostics, blood services, supply systems and digital records that support multiple services.
This companion is for: learning, policy dialogue, stakeholder feedback and scenario exploration.
It is not: a clinical decision tool, validated economic model, forecast, national access estimate or investment recommendation.
Source manuscript: Amega & Ajuwon, Investing in Access: Sickle Cell Care as an Entry Point for Blood-Health Systems in Africa, September 2026.
Selected sources & project links
Follow the evidence
Key sources used in the interactive companion. The full bibliography and evidence discussion remain in the paper.
- Thomson et al. (2023) — global SCD prevalence and mortality burden
- Uyoga et al. (2019) — Kilifi childhood cohort
- Nyonator et al. (2023) — Ghana hydroxyurea programme
- Amarachukwu et al. (2022) — household economic burden in Nigeria
- Kuznik et al. (2016) — cost-effectiveness of newborn screening and prophylaxis across 47 sub-Saharan countries
- Kamya et al. (2025) — household costs in Uganda and Malawi
- WHO (2026) — integrated newborn screening, diagnosis and long-term care
- RHIEOS — April 2026 strategic-access framing
- Reach One for Sickle Cell