The National Drugs for Rare Diseases (DRD) Strategy Needs a Reframe. 
The Network of Rare Blood Disorder Organizations (NRBDO) developed this report to examine the intersection of Canada’s health and immigration systems for individuals with rare inherited blood disorders, particularly sickle cell disease, thalassemia, and hemophilia.

While these conditions are well recognized in Canada, newcomers may face barriers that prevent them from accessing the same level of care as people born here. These challenges stem from differences in diagnosis and treatment in their countries of origin, limited clinician familiarity with global treatment patterns, and systemic obstacles such as language, coverage gaps, or immigration rules like the “excessive demand” clause.

In many parts of the world, treatment for hemophilia remains reactive rather than preventive, leading to joint damage rarely seen in Canadian-born patients. Likewise, newcomers with thalassemia or sickle cell disease may arrive with iron overload, organ complications, or treatment histories shaped by limited access to transfusions or newer therapies. Ensuring equitable and timely linkage to care is critical both for individual outcomes and for the sustainability of Canada’s health system.​

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The Role of Patient Organizations

For newcomers living with rare blood disorders, community connection can be as essential as clinical care. Patient organizations often play a unique bridging role, helping families navigate unfamiliar health systems, access culturally appropriate information, and connect with peers who understand the realities of living with these lifelong conditions.

Recommendations:

1. Build connections with settlement and newcomer services. Establish relationships with local settlement agencies so that newcomers living with rare blood disorders are easily referred to patient groups and can access peer and system navigation support early on.
2. Offer structured peer-to-peer newcomer support. Create or formalize mentorship programs linking newcomers with established community members who share their condition and can provide guidance, encouragement, and practical advice.
3. Maintain a roster of trusted respite or childcare supports. Collaborate with treatment centres and local networks to identify qualified respite providers who understand the needs of families managing complex care, helping caregivers balance employment and treatment demands.

The Role of Federal Government

Federal policies significantly affect newcomers with rare blood disorders in accessing equitable care and participating in Canadian life. The intersection of immigration and health policy can either create opportunities or deepen inequities. For families managing resource-intensive conditions, decisions regarding admissibility, coverage, and family reunification have personal consequences.

The Government of Canada acknowledges the crucial role of newcomers in population and workforce growth. Ensuring equitable healthcare access for those with complex chronic conditions is vital. Federal leadership can align immigration, settlement, and health policies to ensure that no one is left behind due to their medical conditions.

Recommendations  

1. Eliminate “excessive demand” provisions in the Immigration and Refugee Protection Act (IRPA) that deny entry or stay in Canada based on medical conditions and instead prioritize linking people to care.
2. Implement universal newcomer screening for hemoglobinopathies. Recommend testing (CBC and hemoglobin electrophoresis) for all newcomers, regardless of country of origin, to support early diagnosis, treatment, and linkage to care. Additional questionnaire-based screening would help identify those with inherited bleeding disorders.
3. Ensure clear health coverage information for newcomers, including international students. Require institutions and relevant ministries to provide transparent, accessible information on health insurance coverage and exclusions before arrival in Canada.
4. Recognize the caregiving role of family members in immigration decisions. Update family reunification policies to consider the essential support provided by parents or relatives of individuals with chronic conditions, ensuring that family members can remain together when ongoing care needs exist.
5. Support the passage and implementation of Bill S-201, The National Framework on Sickle Cell Disease Act, and ensure that thalassemia and hemophilia are also included within federal disability eligibility criteria.