From humble origins, taiba can now count on a unique two decades of experience in bringing innovative rare disease products to patients across the MENA region. The Dubai headquartered company, now branding itself as the partner of choice for rare diseases across the region, has also moved to create a local manufacturing footprint to better serve demand in MENA.
This journey, overseen by the company’s CEO, Omani pharmacist and entrepreneur, Saif Al-Hasani, has been one of creativity and tenacity. taiba has gone out on a limb to find products that meet the urgent and unmet needs of rare disease patients in the region, strike deals, create markets and support healthcare professionals in a part of the world where the level of sophistication in regulatory and scientific frameworks vary wildly.
Our objective is noble and comes before business: we need patients to have access to therapies and to ensure that we give them hope and an improved quality of life
Saif Al-Hasani, CEO, taiba
While massive progress has already been made, Al-Hasani warns that there is still significant work to be done to ensure that rare disease patients in MENA have globally competitive levels of access to the treatments they need. Rare diseases are especially prevalent in the region, thanks to a combination of genetic diversity and consanguineous marriages [i.e., between relatives], while their spread and impact is exacerbated by limited awareness, late diagnosis, and challenging regulatory pathways and pricing.
On the awareness front, rare diseases are frequently not well-known or understood by healthcare providers, leading to misdiagnosis or delayed diagnosis. Additionally, limited public awareness about rare diseases can hinder early detection and treatment. To address this, taiba has gone all in on medical education, raising awareness and other significant stakeholders up to speed on what are sometimes uncommon ailments and unfamiliar therapeutics. “Doctors may have studied a disease 20 years ago in a textbook but are often not aware of the whole perspective of the disease,” says Al-Hasani. “We are not talking about hypertension or diabetes, but rather diseases which affect a much smaller patient population and for which a new treatment could potentially saves lives or improve the quality of a patient’s life.”
“You know that you are successful when the doctor begins to share your voice,” adds Al-Hasani. “They will adopt the disease and share and extrapolate their experience across the region, with other doctors, taking on the responsibility to treat it.”
Patient awareness and organization is another crucial factor in achieving success, although this is a relatively underdeveloped part of the healthcare ecosystems in MENA countries. “What is lacking in this region is the patient groups,” admits Al-Hasani. “In the USA and Europe, these groups make a big difference in terms of access and awareness, in many cases pushing for the conditional approval of a product prior to full regulatory approval.”
However, Al-Hasani has seen some positive movements on this front. “A product we commercialize for cystic fibrosis in Oman can cost up to EUR 300,000 per year. Before this product there was no other options for the patients to be treated. However, when the patients discovered that our company had this product, they asked taiba directly, which we are legally unable to provide. Following this, they organized themselves into a group, applied pressure on the government, and after a long hustle, finally a budget for this therapy was approved by the Ministry of Finance. This is just one example of patient power!”
A lack of awareness, along with gaps in healthcare infrastructure, is also closely linked with late diagnosis, which makes treatment less effective in many cases. “One of the most important tools in the battle against rare disease is diagnostics; If diagnostics and awareness are where they should be, we find patients and they get treated,” explains Al-Hasani. “If not, doctors can miss rare disease patients as they have so many other diseases to look for, and patients therefore go undiagnosed, sometimes until it is too late.”
Regulatory pathways for rare disease products which often treat little-known illnesses and come with hefty price tags are a challenge globally, and the GCC – despite its relative wealth – is no exception. Al-Hasani observes that “nowadays, GCC health authorities are extremely strict about granting regulatory approval before selling the product. A couple of years ago, we did not have to register; we supplied products under the ‘Named Patient Sales’ program. However, Named Patient Sales are now only possible for a certain length of time, and then the government requires registration of the product.”
Bringing access to rare disease treatments to the patients that need it in MENA is no mean feat against this challenging backdrop. Indeed, the access point has even now been encapsulated within taiba’s slogan, ‘Access Rare.’ “Our mission is to save lives,” proclaims Al-Hasani. “taiba provides access to medications for unique rare disease patients that not enough stakeholders are thinking about. Our slogan means every rare disease patient in this part of the world has the right to access to medicine, and taiba will search the globe to provide access to the patients. We see them as heroes and will work tirelessly to improve their quality of life as well as provide them with the best treatment.”
An important part of taiba’s access push was the establishment of regional pharmaceutical manufacturing two years ago, signifying a step-change in the company’s positioning from a mere supplier of medicines manufactured abroad to a locally embedded and engaged pharmaceutical player. Named MENAGEN, the site is a state-of-the-art bio-manufacturing facility located in Muscat, Oman covering an area of 32,000 ft² and focused on various niche therapeutic products, including, but not limited to, biosimilars, orphan drugs, and oncology, haematology, and nephrology treatments.
“The establishment of MENAGEN was the biggest milestone in the company’s history,” says Al-Hasani. “We are now in the process of registering products in the region’s various Ministries of Health for orphan and specialty diseases. We have already registered the site in Dubai, which will give us greater national and regional security. This is a region which needs and regularly demands localization, as is in the case in Saudi Arabia for example, we are fulfilling these demands in the rare and orphan disease space.”
Regardless of the progress that any individual organisation makes in combatting rare diseases, there is broad acknowledgement that change will only be achieved through close inter-stakeholder collaboration and dialogue. “We must all collaborate to ensure that patients with rare diseases are the focus,” says Al-Hasani. “Our objective is noble and comes before business: we need patients to have access to therapies and to ensure that we give them hope and an improved quality of life. Every patient is important for us. We strive to be patient centric, and we work to remain true to our value that the patients always come first.”
