High Treatment Costs Impacting Rare Disease Care in Morocco
An Urgent Call for Improved Care for Rare Diseases
The mounting costs of treating rare diseases are increasingly impacting care processes in Morocco, as highlighted by a forum organized by the Alliance of Rare Diseases in Morocco (AMRM). The Casablanca-held event aimed to urgently call for improved care for these diseases in Morocco. Its objectives included granting them long-term illness status and ensuring the availability and reimbursement of orphan drugs.
Understanding Rare Diseases and Their Prevalence
By definition, rare or orphan diseases afflict a small number of people, less than one in 2,000 in the population. However, their significance is magnified when combined, with nearly 8,000 different types of rare diseases identified. It is estimated that almost 5% of Moroccans, over 1.5 million people, are affected by them.
Challenges in Access to Care
Despite this prevalence, access to care remains a significant challenge. Only 5% of rare diseases have an effective drug treatment, many of which are unavailable in Morocco. Moreover, many rare diseases do not have long-term illness status that guarantees care and reimbursement. Without this status, even if a drug is marketed in Morocco, the patient faces reimbursement problems. They can only benefit from a discretionary reimbursement that needs to be continuously renewed and may be suspended at any time.
The Role of Social Security in Rare Disease Care
Furthermore, social security rarely covers the entire cost of care, leaving the patient to pay the remainder. The actual amounts of money spent are not really taken into account, as the coverage of medical procedures is based on a reimbursement base that sets a maximum covered amount for a given procedure. The reimbursement rate further limits this coverage to 60 or 90%.
The forum highlighted the difficulty for patients and health professionals to navigate through the complexity and large number of social insurance schemes. This fragmentation does not promote the long-term financial viability of medical coverage as a whole, as it does not allow the financial burden induced by the high cost of care in rare diseases to be spread across the entire population. Therefore, patients with rare diseases face prohibitive costs which most often make them give up necessary care.
Progress and Advances in Rare Disease Care
While the current situation is challenging, there have been advances in the care of many diseases, thanks to the generalization of medical coverage. The National Social Security Fund (CNSS) has extended the list of long-term illnesses covered in the framework of the Obligatory Health Insurance (AMO) to three pathologies: primary immune deficiency, lysosomal diseases, and growth hormone deficiency. In 2021, nearly 23 million DH were reimbursed by the AMO for lysosomal diseases for 45 declared beneficiaries.
The Urgent Need for Improved Medical Coverage
In conclusion, the forum underscored the urgent need for improved medical coverage and access to treatment for rare diseases in Morocco. The prohibitive costs and lack of access to necessary medications are significant barriers that need to be addressed to improve the health and wellbeing of this patient population.
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