Home›Allergy & Immunology› Regulatory and financing barriers primarily hinder optimal care delivery for hereditary angioedema in Balkan countries
Regulatory and financing barriers primarily hinder optimal care delivery for hereditary angioedema in Balkan countriesPolicy gaps create hurdles for patients with hereditary angioedema
Frontiers in MedicinePublished July 21, 2026DOI ↗Editorial oversight: Dr. Amelia Tan, PhD · Internal Medicine & Chronic Disease
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Key Takeaway
Note that systemic regulatory and financing barriers currently hinder optimal care delivery for hereditary angioedema.
This policy and practice review evaluates health systems, policy frameworks, and care delivery for patients with hereditary angioedema in the Balkan Peninsula region. The scope includes an assessment of current care delivery across several countries including Albania, Bosnia and Herzegovina, Bulgaria, Croatia, Greece, Romania, Serbia, Slovenia, and Türkiye.
The authors synthesize findings indicating that barriers to care are now predominantly regulatory, financing, organizational, and educational rather than scientific. Specific identified barriers include prolonged diagnostic delay, unequal access to complement and genetic testing, and the availability of approved but not reimbursed modern therapies. Additionally, issues such as hospital-only access to rescue medication, uneven use of home treatment, incomplete emergency preparedness, and variable registry infrastructure were noted.
The review concludes that countries with stronger alignment between policy frameworks, specialist centers, registries, reimbursement pathways, and patient organizations are better positioned to deliver guideline-concordant care. These findings provide actionable recommendations for ministries, payers, and healthcare providers to address systemic gaps. The results reflect a systems analysis rather than individual clinical outcomes.
How this fits prior evidence
This review addresses a gap in the current coverage by focusing on the systemic and regional infrastructure of hereditary angioedema care. While prior coverage has focused on specific therapeutic interventions such as lanadelumab, oral deucrictibant, and berotralstat tolerability, this analysis highlights that clinical outcomes may be limited by non-scientific barriers like reimbursement pathways and educational gaps in the Balkan Peninsula.
Living with hereditary angioedema can be a constant struggle. Patients often face long delays just to get a correct diagnosis. In the Balkan Peninsula region, research shows that many of these hurdles are not caused by a lack of medical science. Instead, they come from issues in how healthcare systems are organized and funded.
While modern treatments exist, many patients cannot access them because they are not covered by insurance or are only available in hospitals. There is also a big difference in how care is delivered depending on the country. Some areas have better support through specialist centers and patient registries, while others lack basic emergency preparedness and home treatment options.
To improve lives, experts suggest that governments and healthcare providers focus on fixing these policy and funding gaps. By creating better reimbursement paths and stronger advocacy groups, systems can move toward providing more consistent care for everyone regardless of where they live.
What this means for you:
Barriers to treating hereditary angioedema are mostly caused by policy and funding issues rather than medical science.
Common questions
What are the main barriers for people with hereditary angioedema?
Patients often face long delays in getting a diagnosis. Other major issues include unequal access to genetic testing, medications that are approved but not paid for by insurance, and limited options for self-administering treatment at home.
Why is it hard for some patients to get modern treatments?
The main hurdles today are regulatory, financial, and organizational. While the science exists, many modern therapies are not reimbursed by insurance or are only available in a hospital setting rather than for home use.
How does location affect care for this condition?
Care quality varies significantly. Countries with stronger links between policy frameworks, specialist centers, and patient organizations are better positioned to provide consistent care that follows medical guidelines.
Hereditary angioedema is a rare but potentially life-threatening disorder in which outcomes depend not only on correct diagnosis and effective medicines, but also on how health systems organize referral, laboratory confirmation, emergency pathways, reimbursement, home treatment, and long-term follow-up. Selected health systems in the Balkan Peninsula area provide a particularly informative setting for health-system comparison because neighboring countries with active hereditary angioedema expertise differ substantially in rare-disease governance, registry maturity, diagnostic infrastructure, treatment coverage, and patient-organization capacity. This Policy and Practice Review synthesizes international guidance, published regional literature, comparative country information from the Balkan Experts in Angioedema: Consensus and Ongoing Navigation (BEACON) initiative, and advocacy-informed implementation insights to assess current care delivery in Albania, Bosnia and Herzegovina, Bulgaria, Croatia, Greece, Romania, Serbia, Slovenia, and Türkiye. Across the region, the most consistent problems are prolonged diagnostic delay, unequal access to complement and genetic testing, approved-but-not-reimbursed modern therapies, hospital-only access to rescue medication, uneven use of home treatment and self-administration, incomplete emergency preparedness, and variable registry and advocacy infrastructure. Countries with stronger alignment between policy frameworks, specialist centers, registries, reimbursement pathways, and patient organizations appear better positioned to deliver guideline-concordant care, whereas fragmentation at any point in the care pathway reduces the practical value of therapeutic advances. The review argues that the main barriers to equitable hereditary angioedema care across the included health systems are now predominantly regulatory, financing, organizational, and educational rather than scientific. We therefore propose actionable recommendations for ministries and payers, specialist centers and professional societies, emergency-care systems, registry stakeholders, and patient organizations, with the goal of converting regional heterogeneity into a structured quality-improvement agenda.
