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Why Genzyme Should Start A Blog
(Update: Read a five-part series focusing on Genzyme that was inspired by this post.)

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? 

5 Comments/Trackbacks

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Mr. Johnmar, greetings.

I read your entry above, read the five-part series, and reread the above piece. I went away to mull over the points, and now here are my conclusions.

I do not see any reason why Genzyme - more or less than any other biotech company - should start a blog about (biotech) drug pricing. This is a debate that is much bigger than Genzyme - much bigger than any one company - and should be addressed in many forms of media, one of which is a blog.

The reasons that you give for supporting the blog idea are not specific to the drug pricing issue; they are specific to how Genzyme's operations work, which would provide insight into their kind of industry, and peripherally into their drug pricing, although this last point is probably wishful-thinking on our part.

If Genzyme, or any other one company, did create a blog to support their pricing models, they would be immediately attacked as trying to put spin on the issue. Thanks in large part to the proliferation of blog, today's information consumer is too suave and too skeptical to swallow positive public relations (or worse, marketing) statements from "the fox in the henhouse."

"To effectively get its messages out, Genzyme needs another outlet, a way to bypass media gatekeepers and speak directly to its critics."

I'm not sure what the issue is about "media gatekeepers." I doubt that mainstream media is preventing companies from explaining their pricing strategies.

Two reasons why this approach would indeed be ineffective:
(1) Drug pricing critics are not just voicing their concerns thru blogs. I would humbly submit that most critics are not blogging. Blog is one of many outlets of discontent, no more prevalent or effective than any other.

(2) There is no debate, from the biotech firms' point-of-view. Genzyme CEO Termeer, and others, lay out their position very clearly and succinctly: drugs are priced based on a business model. If a business believes they can get 90% markup on their products, then that's what they will charge.

There really isn't any more room for discussion. People may not like this, the price may mean life or death for some, but that is business. It seems heartless - perhaps it is - but that is how our world works.

I sincerely believe that the biotech firms are not (exclusively) the bad guys here. Our entire societal structure pertaining to healthcare is the culprit. So it's not for these companies to explain their actions; it's for the rest of us to make changes to our society that will prevent anyone from having to choose between continued life or continued profit.


Thank you for your close reading of my five-part series and my original post. Overall, I think that your points have merit. First, let me say that I do not think that every company should or can use a blog to communicate with its stakeholders. However, the fact remains that blogs are one means of generating dialogue and conversation about the issues and companies should consider them.

With regard to Genzyme, the main point of my post was to point out that there are many other ways that the company can make its case without relying on the usual tried and true methods of reaching out to traditional media. It is well-known that the media are gatekeepers. They decide what news is important enough to disseminate and what points of view are valid. Blogs offer companies a method of bypassing the "gate keeping" function of media and make their case on their home base.

With regards to the pricing debate, I think that Genzyme understands how important it is to talk about this issue. After all, they reached out to me last year to discuss it (because of my original post) and took the time to publicly respond to Geeta Anand's book, The Cure.

In addition, the debate about biotech drug pricing is alive and well within the blogosphere and beyond. For example, the various guest bloggers at Health Affairs have tackled both sides of this issue for quite a while. While high drug prices may be a "fact of life," Genzyme and the Biotech industry trade group BIO understand that it is critically important to address this issue. After all, recent research indicates that generic biologics would decrease costs. BIO is currently debating the veracity of these studies.

In some respects, I was using Genzyme to explain the limitations of traditional media outreach and the potential of social media communications. It is not for everyone and companies have to decide whether it is worth it to enter the blogosphere or engage via social media. Companies that enter the blogosphere will certainly have to overcome a credibility gap. However, if they show they are willing to speak candidly about the issues, people will come to respect their point of view (even if they don't agree with it). We've seen this happen with hospital CEO Paul Levy's blog.

E-Nyce, thanks again for your comment.

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