Friday, June 19, 2009

Shameless self promotion

I've been writing a informative and entertaining review of the week's local health news for a new business news site, Mass

Check it out. Here's a sample -- a comment on a Globe story. PR majors take note and don't hesitate to read Steve's story too. He's a smooth writer and this is an important issue.

Steve Heuser jumped back into his old biotech beat for a story on how the Costa Rican government is paying Genzyme hundreds of thousands of dollars to treat one patient. The story follows a Costa Rican who learned she has rare, disabling Gaucher disease. The only cure? Genzyme’s $160,000 per year Cerezyme, natch. Genzyme justifies the price by arguing that fewer than 5,000 people in the world have the disease and about 300 get the treatment for free. In this case, the story notes:

"... Genzyme would not bend on the price. The country's health officials were forced to weigh the prospect of a healing gift for one girl against the needs of a nation struggling to care for millions.”

Geoff McDonough, current head of the division that sells Cerezyme, had this bit of PR jargon to offer the Globe:

"We've chosen a way here that's been consistent across the company, and has met the specific needs and complexities of patients suffering from very rare diseases.”

Back on Earth, the elegant, environmentally-friendly Genzyme tower stands out in Kendall Square, overlooking a farmers’ market in the summer and a skating rink in the winter. How much of it was paid for by national health care systems in places like Costa Rica, Bulgaria and Libya? Drug makers should be paid fairly. But something is wrong here.

1 comment:

Melissa Ingold said...

I agree the cost of treatment is extremely high. But I really can't be angry about it.

But as the mother of a baby just shy of his first birthday, who has Gaucher Disease Type III (the fatal neuronopathic form), this treatment is a godsend.

When you look at the fact this disease is so incredibly rare, and a company who actually invested the money and time to find a cure that would treat so few people, all I can say is, thank-you!

If only more companies would take the chance like Genzyme did. If only they could find a treatment that would cross the blood-brain barrier, and treat the hundreds of children who will die from this disease - many by their 2nd birthdays.