At around 5 pm last Thursday, I walked into the Metropolitan Hotel and Spa—an upscale establishment in central Delhi that, on its website, claims to offer its clients a chance to “enjoy luxury with a conscience.” I was there to speak to Dr Carlo Incerti, the senior vice president and head of global medical affairs at Genzyme, a subsidiary of the French pharmaceutical giant Sanofi. Genzyme, an American biotechnology firm, was set up in 1981, and specialises in developing and producing drugs for ultra-rare diseases. Over the course of the interview, I discovered that the company subscribes to the same marketing philosophy that the hotel we were at seemed to espouse: running an elitist business behind a veil of conscientiousness.
Genzyme Corporation is primarily known for pioneering the world's first therapy for Gaucher disease—a rare, and sometimes fatal, condition that causes certain organs to swell and bones to deteriorate. It is estimated that the disease affects less than 10,000 people worldwide. The company was co-founded by an enzymologist named Henry Blair who was collaborating with the National Institute of Health (NIH)—an agency under the department of health and research in the United States of America—to develop a treatment for Gaucher disease through modified enzymes. In 1981, when Blair moved to Genzyme, he took the government contract to produce the enzyme that could cure Gaucher disease with him to the new company. In 1991, Genzyme introduced its solution to the Gaucher disease, a protein-based enzyme replacement therapy called Cerezyme, that was sold in the market for an average price of $200,000 per patient, per year.
A year later, the high price of Cerezyme attracted scrutiny and resulted in an investigation by the Office of Technology Assessment (OTA)—an office of the United States Congress from 1972 to 1995 that provided Congressional candidates with an analysis of scientific and technical issues. According to this investigation, at least a fifth of the cost that was borne to research a cure for the Gaucher disease was paid for by the NIH, under a government contract. In 2005, a report in the Wall Street Journal quoted the findings of this investigation and noted that "The report estimated Genzyme spent $29.4 million to develop the drug. It said much of the initial research was done by scientists at the NIH and paid for by the government.” Furthermore, the Wall Street Journal report stated, “In 1994, Genzyme figured out a cheaper and safer way of producing the drug.” Over two decades have passed since the drug was first produced, but its price remains unchanged. Last year, Genzyme got approval from the US Food and Drug Administration (FDA) to produce and market a new pill to combat the Gaucher disease: Cerdelga. This capsule will reportedly cost a patient $310,250 for a year. Currently, Genzyme’s list of treatments covers seven rare conditions that include the Gaucher disease; Fabry disease, a hereditary disorder caused by a faulty gene in the body; and Multiple Sclerosis, a chronic disease that affects the central nervous system; among others.
It was with these facts in mind that I went to interview Incerti. I had read through the reports by the OTA and keenly followed the controversies around the pricing of Genzyme’s drugs. I had hoped that this meeting would help me understand the intricacies of the market that Genzyme functions within and that Incerti would shed some light on the company’s justification for the prices it charged. I was ill-prepared for the combative conversation that followed. As I entered the hotel’s conference room, a journalist from a leading daily newspaper was finishing her session, affording me a glimpse of the performance that would repeat itself during my interaction as well: a sermon from Genzyme’s representatives on the company’s “humanitarian efforts.”
The meeting’s primary objective, I realised then, was to draw attention to “Stand up for Rare,” Genzyme’s recently launched campaign to increase awareness about rare diseases. The message had not just been prepared and rehearsed, it had been carefully orchestrated. Anil Raina, who according to his LinkedIn profile—which appears to have been deleted after this story was published—is director (new product planning) at Genzyme; the company’s corporate communications head, Archana Thomas; and Ambereen Shah, senior account director, healthcare, at the public relations company Edelman India, were all seated around the conference table, presumably to ensure that the meeting was conducted as planned. As my interview with Incerti began, it became clear that they were also there to ascertain that my questions did not derail the conversation’s intended purpose.