Equitable access to rare disease treatments – The pressing need to provide all with the necessary therapies and care

Full edition

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Equitable access to rare disease treatments

https://bit.ly/EquitableAccess-Herrou

Equitable access to rare disease treatments – The pressing need to provide all with the necessary therapies and care

While the Middle East is steadily forging a path towards excellence in healthcare, there still exist great barriers in bringing rare disease treatments to the region, despite the high prevalence of rare and genetic conditions.

Hassan Herrou, general manager, CSL Behring, Middle East and Africa, provides his insight into the challenges the region faces in providing essential rare disease treatments and the fundamental changes that need to take place to improve the lives of those living with a rare condition

“The way to move forward is to work closely with the regulators and payors for rare diseases. The more the different stakeholders are partnering—patients, payors, pharma companies— the more we will be able to increase awareness and improve access to the different innovative therapies.” Hassan Herrou

The changing face of medical insurance in the Arabian Gulf region

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The changing face of medical insurance in the Arabian Gulf region

Dr Azzam D. Alotaibi is a consultant and assistant professor of allergy, immunology and internal medicine at the College of Medicine, Al Imam Muhammad Ibn Saud Islamic University (IMSIU), Riyadh, Saudi Arabia. He discusses the disparities in healthcare services available in the Arabian Gulf region for those covered by public and private health insurance, and explains the effect this has on people with a rare disease. He highlights the exciting initiatives happening in the region as a result of the National Transformation Program and details the changes he would like to see happen to improve the lives of those living with a rare disease 

“Once the detection rate has improved, I would like to see more collaboration between healthcare providers and researchers in managing individual patients with rare diseases.” Dr Azzam D. Alotaibi

Treating haemophilia in the MENA and GCC regions 

Treating haemophilia in the MENA and GCC regions – Addressing the challenges and opportunities within this diverse landscape

https://bit.ly/Haemophilia-MENA

Dr Magdy El Ekiaby is the head of the Blood Transfusion and International Hemophilia Centre, at Shabrawishi Hospital, in Cairo, Egypt. He has served the haemophilia community in Egypt since 1985, as a haematologist and blood transfusion specialist, and as both a member of the board and vice president of the Egyptian Society of Hemophilia. Dr El Ekiaby gives his invaluable insight on the challenges faced in supporting people with haemophilia in the MENA and GCC regions and on his hopes for the future in treating this rare genetic bleeding disorder

“With the MENA and GCC regions covering such a diverse and large area, it is inevitable that there will always be great disparity in the healthcare systems and in treatments available to patients with a rare disease.” Dr El Ekiaby

Striving for acceptance

https://bit.ly/StrivingForAcceptance-Walid

Striving for acceptance – The psychological effects of living with haemophilia

Having lived with haemophilia for over four decades, and resided in North Africa, the Middle East and Europe, Walid Kobisi has great insight into the diversity of healthcare services and access to treatments in different countries and how this has altered over the years. He discusses his very personal journey with haemophilia, the many stages he has gone through in living with and accepting his bleeding disorder, and how he considers the physical challenges imposed by this rare condition to be almost secondary to the psychological ones 

“The real challenge of haemophilia is not about the disorder itself. It’s about the other holistic aspects of life that are affected by being a person with haemophilia—the psychological and social aspects.” Walid Kobisi

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