Mohamed Abu Shawish discusses some of the core challenges facing rare disease patients in the GCC region and how Kyowa Kirin is engaging in multi-stakeholder partnerships across the healthcare sector to help solve them.
Having been in your current role for a few months now, what has been at the top of your agenda?
In terms of priorities, as a company, we are looking to have a deeper understanding of the patient journey. As much as we know about the conditions that our medicines treat, the healthcare professionals, and even more so the patients and their carers have the most up-to-date information as well as real-life experiences. Therefore, we must always listen to them. As soon as we gain this deeper understanding, we will know the pain points and the areas where we can best leverage our strengths for the best impact. Once we have established ourselves as the foremost industry partner, and expanded our knowledge base, all other aspects will naturally align harmoniously.
How did your career journey evolve to reach this point?
I began working in the pharmaceutical industry more than 19 years ago. I spent around 10 years with Roche where my last role was franchise manager for oncology, but I worked in areas such as rheumatology, nephrology, and haematology. So, it was a good period in terms of gaining experience and exposure in a bevvy of different therapeutic fields.
Afterwards, I moved to Alexion Pharma where my interest in rare diseases started. During that time, I worked with several rare conditions and learned about the suffering of patients and the journey they must go through for diagnosis and to receive the needed treatment. Rare diseases are a challenge for the healthcare industry in terms of the availability of drugs, education, awareness, and referral to an expert in a timely manner.
Next, I moved to Sanofi Genzyme working with rare diseases again, specifically oncology and haematological rare conditions. After around two years I moved to Kyowa Kirin and a few months ago I was appointed as Cluster General Manager for the GCC. The role here attracted me as we work with rare conditions where there are major unmet needs. These include X-linked hypophosphatemia, or XLH, which impacts children and adults in the region, as well as Cutaneous T-cell lymphoma (CTCL), a rare type of cancer. It is a compelling calling for me and a cause worth fighting for.
Today Kyowa Kirin is aiming to be a leading partner in the healthcare market to ensure that patients are diagnosed faster and are able to receive appropriate care early enough to reduce complications and improve quality of life.
What do you see as the leading challenges within the rare disease field in the region?
What we face in the GCC region in terms of rare condition challenges is not overly different to the rest of the world. The first is the long delay to diagnosis. In many cases, patients have no choice but to wait years before they receive the correct diagnosis. This is mainly due to the fact that healthcare professionals do not see these cases very often, which means that more time is required to refer them to the correct specialist. Therefore, we must work with HCPs, so that patients are referred in the right direction as soon as possible.
The second challenge is the lack of availability of rare disease treatments. Due to the limited number of rare disease patients, treatments are often not easily accessible. Therefore, ensuring widespread market access across the region becomes a paramount priority.
We also have obstacles that are unique to the region. For example, we have a lack of diagnostic capabilities so it can take time for patients to receive results. Furthermore, the region is heterogeneous, and for some, separate capabilities, amenities, and systems exist between different regions of the same country. Therefore, we must work with all the relevant stakeholders to try and establish seamless a patient journey throughout the GCC.
How do you ensure that you are a leading partner in the healthcare industry?
One of the biggest ways is through disease awareness and education. This ensures that there are enough capabilities and tools in the healthcare system so that healthcare professionals can recognise the signs and symptoms and refer patients. This is more than just education, but includes the provision of diagnostic tools, such as genetic testing technology. This is not yet present in every location.
It is important that if a patient is diagnosed, the treatment is always readily available, so we are working with the relevant stakeholders, such as payers, doctors, other HCPs, and local partners that assist us in each market. Continuity of treatment is a crucial step as we are dealing with a small number of patients. So, it is not straightforward that the drug is just there waiting. Equally, quality is a pillar of our operations in Kyowa Kirin, from production to distribution and storage.
A big part of rare disease treatments is the negotiation of pricing. How has this step been for you in the region?
The cost of rare disease therapies is typically higher; however, due to the smaller number of eligible patients, the burden on the healthcare system is expected to be relatively low. We continue to demonstrate the added value our portfolio brings by demonstrating how it enhances the lives of patients and brings about tangible benefits.
We are also finding solutions via our patient affordability programs for eligible patients or in circumstances where there are reimbursement challenges. This means we are partnering with multiple stakeholders to support rare disease treatment and provide better access to it. Despite our focus on a limited number of individuals, our goal is to empower them to lead improved lives through our rare disease treatments.
Saudi Arabia and the UAE have fast-track programs. Have you been able to utilise such models for quicker market access?
Yes, we have used those initiatives and it really shows that the authorities recognise the importance and urgency to treat patients. It has allowed us to register products and make them quickly available to patients in the UAE and Saudi Arabia.
Reimbursement in many parts of the world is looking towards value-added healthcare, and this is a point that could be crucial for market access for rare disease treatments. Is the region ready for such a healthcare model?
I believe that in the last ten years, there has been a positive evolution in how the authorities in the UAE and Saudi Arabia view rare disease therapies and the value we bring. Programs such as the fast-track arrangement are a clear indicator of this, and our therapies are now available across the GCC. The authorities understand the value of treating patients with rare conditions early on, and this is obvious in the important developments we have witnessed in the region over the past several years
How is Kyowa Kirin working with patient groups to grow awareness?
The patient voice is critical in supporting the rare disease area. This has evolved over time and more and more people and groups are coming forward to speak on the conditions that they represent. We have noticed that the number of patient groups in the region is less than in other parts of the world, but in many cases, this can be due to the fact there is such a small group of diagnosed patients with no readily available outlet to share their experiences.
This will change over time as the rare disease landscape improves and the stigma of the conditions diminishes. It is a crucial step in the patient journey as it will help educate the general population and healthcare professionals, as every condition is different and needs a voice. We are moving in the right direction, but we still have far to go. Patients’ stories are a real motivating factor in the day-to-day operations of our Kyowa Kirin offices as it shows we are making a difference.
How important is investment in human capital for a unique company like Kyowa Kirin?
It is crucial. The GCC operations of the company started in 2018 and we all share the same passion to put a smile on patients’ faces as well as all the other people involved, such as their families and healthcare professionals. This passion energises and excites the team and makes it easy for us to come in to work every day motivated as ever.
Our team always strives to become the leader in what we do in the region. This could be in medical, supply chain, finance, marketing, commercial, market access, compliance, quality and regulatory. In all these fields we want to be the best. A big part of that is ensuring we know how important our role is in the patient journey and making it smoother and quicker for patients to receive the treatments they need. Our employees know the impact of their tasks, and this drives us forward.
What are your priorities moving forward?
Hopefully, when we next meet, we will have supported the diagnosis of many more patients suffering from the conditions we are working on and removed the obstacles to them receiving their treatments. This is the goal, and we must partner with the healthcare industry to make this happen. In a nutshell, every day we come to work to put smiles on the faces of patients, and this will continue. The value of what Kyowa Kirin brings is not just regional but worldwide, as we make a significant difference to the lives of patients who are benefiting from our life-changing treatments.
