Market Access

Overcoming Obstacles: Access to Medication for Rare Disease Patients in the Middle East

Access to medication for rare disease patients in the Middle East is a complex issue that requires attention from various stakeholders, including healthcare providers, policymakers, and pharmaceutical companies. Rare diseases affect a small percentage of the population, and the lack of awareness and information about these diseases in the region can lead to significant challenges for patients seeking treatment. One of the main obstacles to access to medication for rare disease patients in the Middle East is the high cost of these medications. Pharmaceutical companies invest a considerable amount of money in researching and developing treatments for rare diseases, and these costs are reflected in the price of the medication. Additionally, many of these medications are not covered by insurance or government healthcare programs, leaving patients to bear the full cost themselves. Another challenge is the availability of medication. Some medications may not be approved for use in the Middle East, or there may be delays in getting them approved. This can be a significant barrier for patients who require the medication urgently. Moreover, the lack of infrastructure and resources in some countries can make it challenging to distribute and store medications properly. To address these issues, there is a need for increased collaboration and cooperation between various stakeholders. Pharmaceutical companies can work with governments to negotiate lower prices or provide subsidies for medications. Additionally, policymakers can work to improve the availability of medications by expediting the approval process and developing policies that support the distribution of these medications. Another essential aspect is increasing awareness and education about rare diseases in the Middle East. There is a need for healthcare providers, policymakers, and the public to be better informed about rare diseases and their impact on patients and families. This can be achieved through public health campaigns and initiatives that promote education and research. Moreover, the establishment of patient advocacy groups can play a crucial role in raising awareness and advocating for the needs of rare disease patients. These groups can work to provide support and resources for patients and their families, as well as to raise awareness about rare diseases in the region. In conclusion, access to medication for rare disease patients in the Middle East remains a significant challenge. However, through increased collaboration and cooperation between various stakeholders, improved policies and regulations, and increased awareness and education, we can make progress towards ensuring that patients with rare diseases have access to the care they need.

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Rare disease & the dilemma of access in MENA

Rare diseases are a broad group of conditions that affect a small number of people. Most patients have no treatment or management options available for their condition. As awareness and understanding of rare diseases are often low, many patients struggle to find adequate information about their condition. They may feel isolated, overwhelmed, and unsupported. This limitation of treatment and support has a significant emotional, psychological and financial impact on patients. In the last two decades, concerted public policy efforts have led to a marked improvement in the understanding of many rare diseases and the availability of effective treatment options. However, rare diseases pose particular challenges for research and clinical development. Even if treatments exist, patients may wait several years for a correct diagnosis. Many patients are unable to receive them as often they are not reimbursed by their national health care system or are simply unavailable in their country.  According to a survey conducted by the National Organization for Rare Disorders (NORD), 61% of patients had been denied or faced delays accessing treatments that required pre-approval from an insurance company, and 18% had been denied referral to a specialist.Patients with rare diseases should have the same right to treatment and care as patients with other common diseases. Therefore, national governments and healthcare systems across the globe should prioritize improving care for rare disease patients and optimize access to treatment and follow-up tests.

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