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Masoabi Sefojane: The Cost of a 35-Year Diagnosis Delay

Masoabi Sefojane/LinkedIn

May 13, 2026, 14:45

Masoabi Sefojane: The Cost of a 35-Year Diagnosis Delay

Masoabi Sefojane, Geographic Expansion Lead, Africa and Asia Pacific at MicroHealth , shared a post on LinkedIn:

“The Cost of a 35-Year Diagnosis Delay

A child waits 35 years for diagnosis.

Not weeks.

Not months.

Three and a half decades.

During that time: untreated bleeds.

Preventable joint damage.

Chronic pain.

Opportunities gone.

The World Bleeding Disorders Registry tracked data from 40 countries.

The pattern is unmistakable: diagnosis in low-middle-income countries lags up to 4 decades behind high-income countries.

But statistics don’t capture this cost.

Without early prophylaxis, haemophilic arthropathy develops by age 20.

Permanent joint damage.

The 3-hour journeys to the nearest centre.

The surgeries that follow.

The professional opportunities lost to disability.

By age 30-40, this damage is irreversible.

In South Africa alone, treating a single severe haemophilia patient on demand costs over R1.29 million per year. Prophylaxis costs R949,000. That R342,000 annual difference per patient compounds across a lifetime, before a single surgery, physiotherapy session, or lost wage is counted. The modelling doesn’t even include the cost of long-term complications, disability, or mortality.

In sub-Saharan Africa, 36.5% of patients over 20 have musculoskeletal damage. 39% have no professional activities.

Call it what it is: late diagnosis creates preventable disability.

Here’s the cruel part: we know how to prevent this.

Primary prophylaxis before age 3 prevents joint damage almost entirely.

So the gap isn’t clinical knowledge.

The gap is systems.

We have knowledge.

We don’t have coordination.

If we could prevent 95% of this damage with early diagnosis, why are our systems only finding 37% of patients?”

Masoabi Sefojane: The Cost of a 35-Year Diagnosis Delay