Monday, January 28, 2008

Biomed Notebook

Genzyme blog touts Gaucher drug giveaways

By Ryan McBride

Back in early 2006, health care media consultant Fard Johnmar mused on his blog, asking why Cambridge biotech Genzyme Corp. shouldn't have its own blog to argue its case for the relatively high cost of its Gaucher's disease treatment, Cerezyme.

Apparently, Genzyme liked the idea of having its own blog, and though company officials don't acknowledge Johnmar and his HealthcareVox.com blog as its inspiration, they say the biotech has indeed been blogging for the past year about its efforts to supply some Gaucher's patients in developing countries with free supplies of Cerezyme through its Gaucher Initiative.

Tomye Tierney, the author of Genzyme's blog, is a vice president and general manager of emerging markets for the company. And though the blog, to which there is a link from the company's corporate website, serves as a tool to inform the public of its Gaucher's Initiative, Tierney paints colorful pictures of the under-served countries she visits through the effort.

Tierney blogged about her April 2007 trip to Vietnam, for example: "Each visit reminds me of the first time that I experienced Hanoi -- its wide, multilane streets chock full of people on motor scooters moving as closely together as a school of fish." She then describes how Cerezyme has benefited a brother and sister with Gaucher's disease in the Southeast Asian country.

In an interview last week, Tierney said she had always kept a paper diary of her experiences in Latin America, Europe and the Middle East. So she jumped at an offer last year from Genzyme spokesman Bo Piela to provide content for the blog, called "Face to Face." She said the blog has offered the opportunity to put a face on Genzyme's 10-year-old Gaucher's initiative. (And yes, Genzyme does screen posts made by the public before they appear on the blog.)

For those who aren't familiar with Gaucher's disease, it is a disorder that affects 10,000 people worldwide who lack an enzyme to break down a fatty material in the body, sometimes causing enlargement of the liver and spleen as well as weakened bones. Genzyme's Cerezyme drug is the enzyme-replacement treatment that is given to patients intravenously on a regular basis.

Because of the small number of Gaucher's patients and demand for Genzyme's one-of-a-kind treatment, Cerezyme costs between $25,000 and $175,000 annually per patient, depending on the amount required for a recipient (based on their weight). The product has been a mainstay for Genzyme for years and accounted for $1.1 billion of the company's $3.8 million in 2007 sales. But with the success of the product has come criticism from some who contend that it is too expensive.

The company's Gaucher Initiative -- which is run in partnership with humanitarian nonprofit Project HOPE -- has served as a counterpoint to the pricing criticisms. And Tierney said that 300 patients from such countries as Vietnam, China, and India are now receiving free supplies of Cerezyme to treat their chronic disease. She said her next blog entry will be about her trip to Cuba related to the initiative.

Neurotech nabs funding

Speaking of noble causes, economic development officials in Rhode Island said last week that Lincoln, R.I.-based Neurotech Pharmaceuticals Inc. had been approved for $4 million in state financing to support its expansion in the Ocean State.

The biotech is in late-stage development of a treatment for a vision loss caused by retinal pigmentosa.

Retinal pigmentosa is the death of eye cells called photoreceptors that decrease vision, according to the Owings Mills, Md. nonprofit Foundation Fighting Blindness.

The loan from the R.I. Economic Development Corp. will enable Neurotech to relocate to a 27,000-square-foot office, lab and manufacturing facility in Cumberland, officials said. The manufacturing is expected to be in operation by the second quarter of this year, officials said. The company now employs 21 workers and is expected to increase that number in the coming years.