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Moonshot for Life

I want the patients right next to us

I want the patients right next to us

South-African doctor Jeremy Levin is putting patients at the heart of Ovid Therapeutics, Inc., a New York-based biopharmaceutical company researching new medicines for rare neurological diseases. He is the only CEO who has ever worked in research, biotech, diagnostics, therapeutics, and taken a small company public. He worked at two large pharmaceutical companies and then ran a generics company. Not surprisingly, he has been voted one of the 25 most influential people in the biopharmaceutical industry.

Ovid’s vision is to become a neurology company, which focuses solely on orphan diseases of the brain – an area in which Levin believes there is a tremendous opportunity. “There are no medicines specifically for these disorders; we are really addressing an unmet medical need”, says Levin.

Patients at the heart of business

Ovid is unique in its commitment to understanding the challenges faced by patients and their families. The company actively communicates with the patient community in many interesting and involving ways. They gather beautiful paintings and drawings of patients and their families. They partnered with the Angelman syndrome community to design and identify the relevant endpoints of a trial. The community also helped select the final STARS clinical trial name, and Kaline, a proud parent of a child diagnosed with Angelman syndrome, even designed the STARS logo.

“We crowdsource everything, as we have very direct access to our patient community.  I am running this company because we are building something different. We make the connection with the patient, they are part of the fabric of this company. They come here. There isn’t anyone in this organization that doesn’t know about our patients. Nobody. It’s not just the marketing guys. Everybody, even our research group knows our patients. That’s really unique. You can’t design a car unless you know who is going to sit in it. I want the patients right next to us”, Levin explains.

Out of date perceptions

This patient-centricity is in sharp contrast with the current narrative from some that the biopharmaceutical industry is primarily focused on making money as opposed to helping patients. The recent blistering criticism over the excessive pricing of medicines has been clearly a dominant concern for people outside and in the industry.

“The industry today is incredible. But it has the reputation that it should have had twenty years ago: the reason why pharma is often poorly regarded is not because of what they are today, but what they were. If you look back, 20-30 years ago, the leaders of the pharmaceutical industry were business people and several things happened. Number one: the compensation packages of those individuals was directed to sales, not to innovation. Number two: the environment for insurance was completely receptive to whatever the pricing was. And three: you had a situation wherein fact the pharmacies were fighting for new business,” explains Levin. He believes that because of these practices in the past, there has been a continuation of poor management in pharma.

Changing the narrative

You can go back to 1890 and still see newspapers complaining about companies selling drugs at prices deemed too high for society. This issue is more than a century old, and yet, it still remains unsolved. In 2008, one of the greatest leaders in the pharmaceutical industry P. Roy Vagelos, MD, warned the industry that drug pricing was unsustainable.  Vagelos wasn’t sympathetic to the argument that drugs are expensive simply because R&D is costly, instead of declaring: “I don’t care what the cost is, it’s inappropriate.”

“What you have today is explanations of what the price is, which is ridiculous. This is not the issue”, says Levin. “The price of Gilead’s Sovaldi is completely logical, but the explanation is illogical, and the system doesn’t like the answer. The price is justified because of its impact on the patient: it cures the patient, there are fewer complications, fewer transplants, less deaths – it’s really simple. When Solvaldi came out, it wasn’t a question of whether Sovaldi was good or not, it simply everybody saying ‘look at this price tag’.”

We give the wrong explanation

Levin believes that part of the issue it that the public understanding of the research process is still very limited, but that the bigger issue is the imbalance of money spent between profit-making activities and life-saving ones. “You simply cannot say we spent so much money, so now we charge more”, he says. “That means you are not very efficient. How is it that large companies could spend seven billion dollars a year, and come up with nothing in their pipeline? This tells you that there is something very wrong, not in the amount of expenditure, but in the allocation of that expenditure.” 

Life over profit

Levin talks about a classic example of where this misallocation almost got in the way of positive progress: Gleevec from Novartis. “When you let marketing control drug development, you have a catastrophic problem. In the case of Gleevec, CEO Dan Vasella, Paul Hurling and a couple of others were trying to make a decision on a $200 million investment in development of this interesting drug: the first ever targeted towards a molecular mechanism for a disorder which is completely incurable – Chronic Myeloid Leukemia. The question on the table was whether we should invest in Gleevec, and the answer from the marketing team was negative. ‘It’s a tiny disease, they all die, and we can’t make any profit’, they argued. Vasella’s question was very simple: does this medicine work?”, Levin explains. After the doctor had confirmed that the drug extended patients’ lives, and had the potential to dramatically increase it beyond the observed five years, Vasella made the decision to invest. “Had it gone the other way, this breakthrough would never have come to be”, adds Levin.

Committing to innovation over profit

Levin believes that the industry needs to be clearer in its focus on innovation, both in terms of telling the right stories, but also in terms of making a tangible, visible change to management compensation and interests of those at the top. “The Johnson & Johnson Credo was written in 1947. These four paragraphs are so important: there is no doubt that the best practice right now is undertaken by Johnson & Johnson. And in my mind, that is because I believe even for all the faults, for all the errors, there is a culture to that Credo. It’s really exceptional.”