Situation
Accessing consistent and high-quality medical care in the Kingdom of Saudi Arabia (KSA) presents significant challenges for patients with rare diseases. Rare diseases, defined as conditions affecting fewer than 1 in 2,000 individuals, often require extensive experience as well as specialized care and treatment because needs of patients with rare diseases are unique. Frequent hospital visits for specialized treatments, such as intravenous (IV) infusion therapies, often become a challenge, leading to delayed or forgone care. The Saudi Ministry of Health has initiated support groups to promote social solidarity and engage patients with chronic or rare diseases and their families with health practitioners to improve their physical, psychological, and social conditions. Furthermore, events for rare diseases aim to bring together experts and researchers to explore opportunities for collaboration and support a range of public-private partnerships to enhance the management ecosystem for rare diseases. Despite these initiatives, there remains a need for comprehensive strategies to improve access to specialized care for rare disease patients in KSA.
Solution
Recognizing these difficulties, a multinational pharmaceutical company identified the need for a Patient Support Program (PSP) tailored to address logistical, geographical, and compliance barriers for patients with rare diseases. The PSP, launched in 2022 in collaboration with Axios International, was envisioned to provide holistic and personalized support to such patients that included services such as home administration for IV infusions, medication delivery between hospitals and directly to patients, and the provision of essential medical devices. It also was designed to align with the company’s commitment to improving access to healthcare and monitoring medication usage in the market to ensure efficacy and patient safety.
Initially, the program focused on rare diseases requiring Enzyme Replacement Therapy (ERT), such as Gaucher disease, Fabry disease, Pompe disease, MPS1, and ASMD. However, the broader objective of the program extends beyond disease-specific care to include a robust support system that addresses logistical and operational challenges in delivering healthcare across the Kingdom. The program also facilitates the delivery of medications to the treating hospital or the patient’s home as per convenience. It also ensures the provision of medical devices and, thereby helps patients receive the necessary infusion sets required for their therapies, enabling smooth and uninterrupted treatment at home. The program expanded in July 2024 to enhance treatment options. Under the program, both the patients and caregivers are provided with detailed education and awareness on proper medication storage, administration, and adherence practices.
Results
Currently partnering with a number of referring physicians across 13 hospitals in KSA, the program ensures equitable access to care for patients regardless of location. The program has enrolled over 60 patients to date since its inception and has considerably improved treatment adherence by addressing logistical barriers and providing at-home services. Patients now benefit from a seamless support system that integrates home administration, medication delivery, and medical device provision. The program represents a transformative approach to healthcare delivery in the country, bridging gaps in access and compliance while providing personalized support to patients to achieve better health outcomes.
To know more about our partnered programs, write to us at axios@axiosint.com