Member Spotlight: Q&A with Sobi

Oct 01, 2018

Every month, MassBio spotlights a member company and the great work they’re doing to advance the life sciences industry and support the patients we serve. This month we spoke with Rami Levin, President of Sobi in North America, who has over 22 years of experience in the pharmaceutical industry in a variety of commercial leadership roles across different countries, both at a corporate and country level. 

Tell us about your organization and your current initiatives.

Sobi is an international biopharmaceutical company focused on rare diseases. This is an area of tremendous unmet need, with approximately 7,000 identified rare diseases but fewer than 600 approved treatments. While some rare diseases impact populations in the hundreds of thousands, at Sobi we focus on ultra-rare diseases, which sometimes impact groups as small as 50 patients. These patients are often forgotten or ignored, which is where we step in. Our primary business focus in North America is Inflammation/Immunology and Genetics & Metabolism, and we leverage our internal scientific research and development expertise as well as external innovation to bring new medicines to patients suffering from these conditions.

Even when treatments exist, gaining access to specialty medications is often complex. That’s why we at Sobi also work to ensure patients around the world get timely and sustainable access to our treatments.

We have a fast-expanding North American headquarters in the greater Boston area and another key location in Toronto, Canada. As we continue to grow, we are hiring for multiple roles across sales, medical science, patient services, patient advocacy, accounting, and human resources.

How does your organization’s activities help patients now and into the future?

We continuously innovate to keep up with the changing needs of patients who are living with rare diseases. As more rare disease treatments emerge, patient populations are growing up, and their needs are evolving over time. We listen to patients and caregivers, seek to understand the challenges they face, and work to develop solutions to help them address those challenges. These solutions may also include new formulations, new dosage strengths, or new support services.

Additionally, Sobi is committed to providing more than just medicines to patients. We provide a customized suite of support services for the patients and caregivers who utilize our medicines. These services may include nurse support, help navigating reimbursement, refill reminders, door-to-door medicine delivery, educational information about the disease, peer to peer mentoring, and even tips on managing daily injections or recipes to help comply with the nutritional guidelines associated with a disease. We are committed to providing a high level of support and being a partner to the patient community throughout their journey, both now and into the future.  

What do you see as the biggest challenge facing the life sciences industry today, and what’s your advice for overcoming?

The biggest challenge we see working in rare disease is the development and access to treatments for those who desperately need them. The disparity between the number of identified diseases and the number of treatments is vast. Research and development of these treatments is rife with difficulty, and the current pathways to approval don’t always accommodate the unique challenges of working with very small numbers of patients.

It is critical that companies, regulators, governments, legislators and payers all work together to address these challenges. Sobi is committed to this type of collaboration. For example, we were able to collaborate with researchers at the NIH and with regulators at FDA to obtain an approval for one of our medicines in an extremely rare inflammatory disease called Neonatal Onset Multisystem Inflammatory Disease, even given limited data available in this very small patient population. Additionally, we have been working with regulators and government in Canada to support the creation of an approval and reimbursement pathway for rare diseases, as such a pathway currently does not exist. 

For us, it’s always been about getting more treatments in the hands of those who are in great need.

What’s next for your organization/what are you focused on in the coming year?

We are excited to recently announce that we acquired the global rights to a new late-stage rare disease candidate that addresses a high unmet medical need in primary Haemophagocytic lymphohistiocytosis (pHLH). pHLH is a syndrome of extreme immune activation, and the primary form of the disease mainly occurs in infants and young children. The mortality rate for the disease is very high, even with the best available care. The U.S. will be the first country in the world to potentially approve and launch this new product and bring another important medicine to rare disease patients. It’s an incredible opportunity to increase the help we can give these patients.

In 2019, we will continue to drive our robust, emerging pipeline based on expertise in genetics/metabolism and recombinant protein engineering, exploring new partnership opportunities and continuing to expand our team along the way.

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