Read the Conversation
Meeting highlights:
- Introducing Sherif Ramadan, who is leading Chiesi Global Rare Diseases in Saudi Arabia. Over 20 years of experience in the Saudi Arabian Market, now managing Middle East and North Africa for over 4 years.
- Saudi Arabia's leadership in the region, with the largest population in the Middle East.
- Ramadan's critical efforts in increasing access for patients in Saudi Arabia and improving reimbursement processes. Working with key stakeholders from the Government and Academia.
- Chiesi's portfolio evolved from one product to a portfolio of ten, focusing on rare diseases, in alignment with the Kingdom's efforts to strengthen access to orphan drugs.
- The vision of Chiesi is to be one of the leading global rare disease companies all over the globe.
- MOH Saudi play a critical role in leading the rare disease within the region. Chiesi's vision aligned with advancing the construction of its biotech center of excellence which will bring the future of medicine to Parma.
- The importance of establishing Saudi Arabia as a clinical trial hub to support rare disease patients in Saudi Arabia.
- Raising awareness and establishing the first patient advocacy group in the region for rare diseases in Saudi Arabia.
- Alignment with Vision 2030, working as partners to transform healthcare 2030 vision enhances providing the treatment of all Saudi people with equity including rare for sure.
EF: Could you briefly describe the impact of the global rare diseases portfolio on the area, how your role has changed over time, and what your current priorities are?
SR: I began working on rare diseases eight years ago, and it was a tough mission in the area because working on rare diseases is extremely different from what is done in Western countries. Although those locations have high levels of education, we have many difficulties, particularly concerning rare disease awareness and medicine, which is particularly costly. The 2030 vision places equal treatment for all Saudi citizens at the top of its priority list. Even though they are rare disease patients, they are entitled to treatment.
We concentrated more on the region, particularly Saudi Arabia, the largest market. We started considering the possibility of receiving reimbursement for our products to make them accessible to all Saudi patients. We worked with numerous additional organizations, including the Saudi National Guard, the Ministry of Health (MOH), the Ministry of Defense, and Saudi medical cities. We even participated in international clinical studies in Saudi Arabia. From a global standpoint, the Chiesi Group established a new biotech center of excellence in 2024. Our goal at Chiesi was to become one of the world's biggest rare disease biotechnology companies. In 2020, Chiesi launched a single product for rare diseases; currently, in 2025, there are ten medications available.
The Biotech Center of Excellence was established in 2024 to create and develop biological medicine, overseeing every step from medication production to cultivating cells. It aligned the company's global vision with its local vision. It even aligned with the MOH goal and Saudi Arabia's 2030 vision. According to the presentations and lectures I attended, focusing on rare diseases is one of MOH's major goals or visions. Three to four months ago, they also declared their intention to establish MOH as a rare disease center of excellence. Together with the MOH, we have a common objective that combines the company's local vision with our global company's mission to contribute to this center of excellence by increasing awareness. We even have numerous projects with IQVIA, MOH, and other organizations that offer patient support services. Therefore, we are concentrating on ways to assist and support Saudi patients with rare diseases.
Saudi Ministry of Health's vision is incredible, and the progress made over the last 5 years under the leadership of Prof. Ahmed Aljedai and Dr. Hajer Al-Mudaiheem was outstanding, particularly with rare diseases.
EF: How do you modify the market perception following the acquisition, and how do you position yourself to gain market share?
SR: There are only 15 to 20 patients in Saudi Arabia for certain rare diseases. However, that number is lower in countries like Kuwait or Qatar, where there are only roughly five or six patients. When we originally started, we aimed to treat one or two patients. These patients would be prominent, like those from King Faisal or the National Guard; these are the most specialized centers in the Kingdom, so it will be simpler to get those patients there.
Since we were aware that MOH at the time mostly addressed diabetes and hypertension rather than rare diseases, the plan was not to go there. However, their vision changed, and we also adjusted our approach. We began collaborating with them by endorsing their goal of assisting Saudi patients. Because they believed that having the rare disease in the family was embarrassing, the majority of those patients even refused to visit the hospital. I spoke with doctors who told us that some patients would rather die than receive treatment because they have a rare disease.
We decided to collaborate with the MOH regularly to obtain reimbursement and provide patients access. We also needed to spread the word about it. Increasing awareness is crucial since the most difficult issue in our area is that most doctors—not just the families—do not know much about rare diseases. For the doctor to recognize and diagnose those individuals, it is crucial to increase awareness.
Over the past four to five years, we have lost a lot of patients as a result of some doctors' inability to detect certain conditions. For this reason, it was determined to focus on several areas, including working with MOH, the doctor, and the patients. Dr. Hajer declared six months ago that the first patient advocacy group in Saudi Arabia would be established. The lack of a patient advocacy group in our region—not just in Saudi Arabia—was among the most difficult issues. We never had such a group in Saudi Arabia because of the conservative culture, but it is more common in the US and Europe.
EF: How do you have knowledge transfer while balancing your priorities?
SR: Saudi Arabia is currently at the forefront of the area in many ways. They started implementing risk-sharing agreements, managed entry agreements, and other agreements that would cost us a lot of money as a company, which made negotiations difficult for us and the different corporations. We recognize that it is their right as partners. For example, if you spend half a million euros or US dollars on a patient's therapy, you must ensure that the patient would benefit from the medication.
We now have the platform, the structure, the patient association, and the patient support. Therefore, I believe we are now on track to progress with rare diseases, with a great deal of support from the government to the Ministry of Health and significant financial investments and annual budget increases for the MOH. I think the budget exceeded one trillion dollars this year. Because of the high incidence of consanguinity, the region has a far higher prevalence of rare diseases than the US and Europe, making it our top priority even worldwide.
For instance, Saudi Arabia has more cases of a particular rare disease than any other country. Despite the US being the largest market globally, the number of patients surpasses even that of the US. Due to the high degree of consanguinity, Saudi Arabia has the greatest number of people with the rare condition known as familial hypercholesterolemia.
The patient's needs are not commercial, and the goal is not to make sales and collect your money. But it's similar to a social service you provide to the community. Nobody suffers as much as a patient with a rare disease and their family. The good news is that the MOH has adopted this mentality, putting patients' needs ahead of those of healthcare providers. We are grateful for the 2030 Vision, which enables the MOH to share our objective of providing care for Saudi patients.
EF: How do you envision eventually using your operations in Saudi Arabia to share your expertise with the rest of the world?
SR Having a Saudi affiliate for Chiesi was one of the corporate goals. Our growing presence in a scientific office in Saudi Arabia aligns well with the Saudi government's Vision 2030. We have previously conducted numerous clinical trials in Saudi Arabia and anticipate conducting three or four more with MOH in 2025. To give Saudi Arabia greater visibility on the ground, we have a solid plan for knowledge transfer and will conduct numerous clinical trials.
Saudi patients should be given precedence in clinical trials involving such patients. Ten years ago, most centers participating in these international trials were limited to the US and Europe. We currently have even the first three studies for some of our products. We have had two Saudi centers for three years. We are working to obtain a new approval for one of our medications; we applied to the Saudi FDA before the US FDA. This showcases the pioneering role of Saudi Arabia.
Getting Saudi FDA approval before the US FDA is necessary since the Saudi FDA wants to be in Tier 1. Previously, you had to obtain permission from the USFDA and EMA before applying to the Saudi FDA. But now, even if you don't have an EMA or a US FDA, you can still apply to the Saudi FDA if a Saudi participated in your research. I think this is a fantastic accomplishment. This is something we never thought would occur. Many procedures, processes, and regulations have changed in Saudi Arabia, encouraging businesses to invest and help patients.
How can you maintain your reputation as a reliable partner of choice?
SR: Chiesi is a family business. Jacques Chiesi, the head of the Global Rare Disease Unit, said in 2020 that the moment had come to concentrate on rare diseases. He began construction on this unit in 2020 for that reason. There was just one medication available then, but they began to buy and sell other medications, eventually reaching ten rare disease products. They shared their ambitious vision with us, which calls for them to keep expanding to create a world free from rare diseases. They will even purchase another rare disease medication, which is expected to be added to our portfolio in 2025.
As part of Chiesi's 2023 vision of being the leading rare disease company, this aligns with the spread of awareness of rare diseases worldwide. For this reason, MOH began to see us as a reliable partner.
From their point of view, we consistently offer clinical trial-based scientific backing for MOH. We have numerous partnerships, including controlled entry agreements, with MOH. We have a value-based risk-sharing arrangement and have participated in most MOH initiatives to increase awareness of rare diseases and the Kingdom.
EF: In five years, how would you like to have contributed to the realization of Vision 2030?
SR: I always advise my daughter and son to concentrate on how they can help their community. As a Muslim, I think that God promises to help you if you help someone else. Rare disease patients endure a great deal of suffering. When I had the chance to meet them, it was far too emotional. This job is more than a job; it is about helping the community. Many recruiters have called me daily, offering to transfer me to larger, more lucrative organizations, but I have told them I will stay with rare diseases until I retire. I enjoy my job in this field.
When a doctor tells one of my staff members that we have improved the lives of a rare disease patient, you understand your impact on lives. I have spent the last 20 years working in the industry, and while all businesses help patients, those specializing in rare diseases profoundly impact their lives. It makes me very happy to be a part of this journey. "Leave no patient behind" is our motto. To ensure no patient is left behind, we are making every effort and battling to reach every patient, even in the most remote cities.
