
The newspaper articles were gut wrenching. One recounted how a man sobbed as he phoned friends and family to raise money to pay for his wife’s expensive medication. Another featured the tales of patients struggling with their insurance companies, depleting their savings and taking out second mortgages on their homes to pay for medical treatment.
The articles were published in the Wall Street Journal between November 16 and December 28, 2005. Geeta Anand, who wrote the stories, examined how the high cost of medications affects patients, their families, insurance companies and healthcare providers.
In two of her four articles, Anand singled out Genzyme, a Massachusetts-based biotech company, which makes the only available treatment for Gaucher disease, a rare illness that results in organ swelling and bone damage. She asked: “Why is the price of Genzyme’s drug for Gaucher disease about $200,000 a year for the average patient?” She went on to note that “the company makes a profit of more than 90 percent, excluding marketing and corporate costs, but including capital depreciation.”
Genzyme’s Response
Genzyme responded to its critics in a feature story published in this month’s edition of Pharmaceutical Executive. Sara Calabro wrote a highly favorable review of Genzyme’s activities. She portrayed the company as altruistic and dedicated to ensuring that no patient is denied its medications because of his or her inability to pay. She also said that the company was “unapologetic” about its pricing strategies. In the article, Genzyme CEO Henri Termeer said: “We have to explain that our drugs are expensive, but I don’t mind explaining it. We try not to have massive price differentials between markets. We try to be very insistent on access, making sure we don’t abuse the monopoly situation we’re in.”
After quoting Termeer, Calabro goes on to talk about Genzyme’s extensive R&D activities and how it is working with governments around the world to ensure that patients have access to its medications. One of the highlights of the article for me, was a quote from a Genzyme executive talking about how children with Pompe disease (a muscle disorder) “can’t sit still . . . fall on themselves . . . [and] very quickly stop being able to breathe on their own.” Genzyme is spending $500 million to develop a treatment for this disease. Get this: only 200 people globally will use the drug.
Why Is Genzyme Relying On A Trade Publication To Get Its Message Out?
As I read the article, I couldn’t help but wonder: “why is Genzyme’s response limited to Pharmaceutical Executive?” (I ran a quick media audit looking for other articles featuring Genzyme’s response to critics of its pricing policies, but couldn’t find any that were published in the past year.) Part of the reason may be that most media are skeptical of pharmaceutical companies and would be hesitant to publish a story like the one that appeared in Pharmaceutical Executive. To effectively get its messages out, Genzyme needs another outlet, a way to bypass media gatekeepers and speak directly to its critics.
Why Genzyme Should Start A Blog
Last year, the French unit of GlaxoSmithKline (GSK) started a blog designed to encourage debate about French-related healthcare issues, including drug pricing. The blog has allowed GSK to get its side of the story out and engage critics on its own terms.
Given the criticism that Genzyme has taken about its pricing policies, I think it should adopt a similar strategy. Genzyme: start a blog and encourage balanced debate about biotech drug prices. In its blog, Genzyme could expand upon all of the things it touched on in the Pharmaceutical Executive article, including:
- Its work with governments to help them pay for medications
- Its dedication to finding medications for rare diseases
- Its difficult and expensive manufacturing processes
- How everyone gets its medications – regardless of their ability to pay
How great would it be if Genzyme had its scientists, public affairs executives and physicians blogging about what its like to work at Genzyme and how they are dedicated to doing right by patients.
Yes, There Are Downsides, But . . .
Now, I’m not so crazy about blogging that I don’t see its downsides. For example, John Wagner wrote a post today noting Edelman’s difficulties managing the blogosphere conversation about the recent “Wal-Gate” scandal and “Strumpette.” He says that the difficulty of responding to critics via blogs is one reason corporations have been so slow to embrace blogging.
There are also serious legal and regulatory issues involved with a pharmaceutical/biotech company blog. How does the company deal with comments – negative and positive? How does it post content on a regular basis given how long it takes to vet a public statement at a company? How does it ensure that information on the blog remains “on-label?”
I believe that while these issues are difficult to solve, they are manageable. The benefits of having an unfiltered communications channel like a blog that patients, advocates, media and others will pay attention to are significant. Best of all, if Genzyme started a blog, it wouldn’t have to rely on an industry trade publication to rebut the Wall Street Journal and its other critics.
For more about what I think about the benefits of blogs for healthcare, please see this post. Also, look for my upcoming report, “The Emerging Healthcare Blogosphere: What Is It & Why Does It Matter?” in early April. In the report, I talk about the issues faced by pharmaceutical/biotech/medical device companies considering whether to start a blog in more detail.
That’s my two cents. What do you think?

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