Heghine Khachatryan: Key Takeaways from Day 1 – WFH 2026 World Congress

Heghine Khachatryan, Editor-in-Chief of Hemostasis Today and Head of the Hemophilia and Thrombosis Center at the Yeolyan Hematology and Oncology Center, shared posts on LinkedIn about key insights from Day 1 of the World Federation of Hemophilia (WFH) 2026 Congress:

“WFH 2026 – Day 1 Insights

Prof. Glenn Pierce | Vice President, WFH

Today’s opening session set a powerful tone for the future of global hemostasis care – grounded in equity, innovation, and system-level transformation.

A few critical takeaways from Prof. Glenn Pierce’s presentation:

1. The true cost of innovation vs. access gap

Advanced therapies—including monoclonal antibodies, siRNA (fitusiran), and gene therapy—are not inherently unaffordable to manufacture.

• Production costs for monoclonals: ~$50–200/gram
• siRNA annual manufacturing: ~$1,500–3,500 per patient
• Gene therapy: ~$50,000–87,000 per dose

The paradox is clear:

Cost of production does not equal cost of access.

2. Equity remains the central challenge

Despite scientific breakthroughs, global access is still uneven.

The ‘Bumpy Road to Equity’ clearly illustrates:

Many patients remain at:

• No therapy
• Episodic treatment
• Suboptimal prophylaxis

While others are approaching:

• Advanced therapies
• Gene therapy
• Near-complete protection

This is not a scientific problem anymore – it is a policy and systems problem.

3. Real solutions are known—but underutilized

Key strategies highlighted:

• Tiered pricing based on national income (GNI)
• Voluntary licensing to enable local manufacturing
• Strategic partnerships with LMICs
• Transition from donation models to sustainable systems

4. Lessons from global progress (2015 – 2026)

The transformation is undeniable:

• Patient registries evolved from ‘concept’ to global databases
• >35,000 patients supported through humanitarian programs
• Inclusion of emicizumab and factor concentrates in WHO EML
• Expansion of training and global treatment guidelines

Yet, equity still lags behind innovation

5. Strategic shift: self-sufficiency and local production

China’s model highlights a key future direction:

• Domestic production of coagulation factors
• Active pipeline: FVIII mimetics, anti-TFPI, gene therapies
• Reduced dependency on external supply chains

Raises an important question:

Should countries move toward therapeutic independence

Final message

This session reinforced a crucial paradigm:

• We are no longer limited by science.
• We are limited by implementation, policy, and global coordination.

The next decade in hemophilia care will not be defined by new molecules alone – but by our ability to translate innovation into equitable access.”

See more in the gallery.

“Prof. Philippe de Moerloose | ‘Bleeding Disorder Care in a World of Crises’

Today’s session delivered a powerful and uncomfortable truth:

Hemostasis care cannot be separated from global instability anymore.

‘The time for silos is over.’

1. The new reality: interconnected crises

War, displacement, and climate change are no longer independent variables – they are a self-amplifying system:

• War leads to displacement leads to further conflict
• Climate change leads to displacement leads to instability
• Displacement leads to fragility leads to health system collapse

This creates what we now define as complex displacement contexts

2. Scale of the crisis is unprecedented

• 117 million people forcibly displaced globally (2025)
• 65 active conflicts worldwide
• Civilians represent >90% of victims in modern wars

High-intensity zones include:

Middle East, Ukraine, Sudan, Myanmar, Horn of Africa, Sahel, Afghanistan–Pakistan

3. Direct impact on health and hemostasis care

These crises are not abstract—they directly disrupt care systems:

• Destruction of hospitals, labs, supply chains
• Targeting of healthcare workers
• Collapse of vaccination programs
• Rise of infectious diseases (cholera, measles)
• Severe malnutrition and pediatric mortality

Key insight:

Impact on health is not additive – it is multiplicative

4. Hemophilia: the hidden inequality in crises

• In 2026, 3 out of 4 people with hemophilia lack routine care even before crises
• Women and girls remain underdiagnosed and underserved
• Advanced therapies exist – but access remains deeply unequal

A paradox of modern medicine: Innovation is accelerating, but equity is not

5. The overlooked humanitarian dimension

Many of the most severe crises are under-reported despite affecting >40 million people.

Drivers of vulnerability include:

• Poverty
• Political fragility
• Social inequality
• Pre-existing health system weaknesses

6. What must change? (WFH perspective)

• Integrate hemophilia care into humanitarian response systems
• Strengthen cross-border collaboration and supply continuity
• Invest in training local healthcare providers in unstable regions
• Ensure access to coagulation products during crises – not after

Final reflection

This session reframes our role as hematologists:

• We are not only clinicians
• We are part of a global health resilience system

The future of bleeding disorder care will depend on how well we respond not only to disease – but to displacement, conflict, and climate realities.”

See more in the gallery.

“WFH 2026 – Day 1

Prof. Brian O’Mahony | Access, Affordability, and Advocacy in a Fragmented World

Today’s session delivered a rigorous and data-driven perspective on one of the most critical determinants of hemophilia care globally:

Access is not only unequal – it is structurally imbalanced

1. The economics of inequality in FVIII access

Global pricing data reveal a paradox:

• High-income countries (HICs):

Higher absolute prices, but sustainable access and coverage

• Upper-middle (UMIC) and lower-middle income countries (LMIC):

Lower nominal prices, yet limited availability and inconsistent supply

Key insight:

Lower price does not translate into better access

2. Conflict reshapes disease into emergency

In fragile settings such as Ukraine and Gaza:

• Chronic conditions become acute survival threats
• Prophylaxis vs. on-demand care becomes a determinant of survival and dignity
• Children are disproportionately affected
• Psychological burden equals the physical burden

War introduces risks beyond medicine

3. System pressure across regions

• Migration flows reshape national healthcare systems
• Countries like Poland face increased patient load with constrained budgets
• Neighboring countries absorb both humanitarian and medical burden

Result:

Dual pressure on both origin and host countries

4. Progress exists – but remains uneven

Data from 2014 – 2024 show:

• HIC: 21% increase in FVIII use
• UMIC: 73% increase
• LMIC: 100% increase
• LIC: 600% increase (from extremely low baseline)

Interpretation:

Growth is real – but baseline inequity remains profound

5. Structural barriers beyond medicine

• High healthcare costs limit migration options for patients
• Reduced funding for NGOs and civil society
• Policy shifts (e.g., rollback of DEI frameworks) affect advocacy ecosystems

Access is shaped by politics, economics, and governance—not science alone

6. The evolving role of the hemophilia community

A major paradigm shift:

• Patients are no longer passive recipients
• Advocacy is institutionalized
• Patient organizations influence policy and regulatory frameworks

The hemophilia community is now:

• A policy actor, not just a clinical stakeholder

Final message

This session underscores a fundamental truth:

• Scientific progress is accelerating
• But equitable distribution is lagging behind

The future of hemophilia care will depend on:

• Policy engagement
• Sustainable financing models
• Strong patient advocacy
• Global cooperation under instability

Our voices need to be heard now more than ever in an uncertain world.’ ”

See more in the gallery.

“WFH 2026 | Humanitarian Hemostasis in Crisis Settings

Insights from Dr. Assad Haffar, Director of Humanitarian Aid

In a world increasingly defined by instability – conflict, natural disasters, and forced displacement – hemophilia care is no longer a purely clinical challenge. It is a logistical, humanitarian, and ethical imperative.

Dr. Assad Haffar’s presentation highlighted how the World Federation of Hemophilia (WFH) has transformed humanitarian aid into a structured global health intervention.

From Donation to System-Level Impact

Since its launch in 2015, the WFH Humanitarian Aid Program has evolved into a highly coordinated system:

• Supporting over 85 countries worldwide
• Backed by multiple global donors and multiyear agreements
• Enabled by strategically located warehouses (USA, Europe, Asia)
• Delivering treatment via air and sea under time-critical conditions

This is no longer ‘donation’ – it is precision logistics in medicine.

Crisis Reality: When Time Equals Life

Case studies, including the 2023 Syria earthquake, demonstrated a critical truth:

• Patients with bleeding disorders cannot survive delays.
• Absence of clotting factor: immediate life-threatening risk.

In such settings, rapid deployment of factor concentrates (CFCs) becomes equivalent to emergency medicine.

Operational Barriers in Global Crises

The program has navigated substantial challenges:

• Border closures and disrupted supply chains (COVID-19 era)
• Delays in import authorization
• Escalating shipping and storage costs
• Limited shelf-life of biological products
• Restricted field monitoring due to travel limitations

Yet, despite these constraints, life-saving delivery continues.

Key Strategic Insight

Effective humanitarian care in hemophilia depends on:

• Local partnerships (NMOs)
• Coordinated global infrastructure
• Speed of response
• Multidisciplinary execution

This is systems medicine at a global scale

Conclusion

WFH has redefined its role – from a capacity-building organization to a credible humanitarian actor delivering real-time clinical impact.

In crisis settings, innovation alone is not enough.

Access, logistics, and global coordination determine survival.

Saving lives is not a cost – it is the outcome.”

See more in the gallery.

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