I was so happy about Radicava, the breakthrough drug to be released in August that can help people with ALS (Lou Gehrig’s Disease) by slowing down their physical decline. I’m disappointed that it slows it by only 33%, but that’s a big step toward a larger number. I have some questions, though.
For one, why will it cost $1000 per infusion/dose, meaning $150,000 per year? MT Pharma America Inc., the drug’s maker, has announced that it will help people financially to buy it, whether or not they have insurance. In that case, why not just lower the price? Just make it affordable to all who need it without making sick people get their hopes up then have you refuse or allow them such a small amount that they still can’t afford it—or make them jump through hoops made of paperwork even to apply, then wait for an approval that may never come?
Pharmaceutical companies argue that it takes a lot of money to bring a drug to market, lots of R and D. But people contributed a good chunk of money through the Ice Water Challenge, which brought in $115 million plus another $13 million in donations directly to the ALS Association.
The Association has spent some $47 million so far on research (plus 20% of the $115 million on patient and community services and 11% on processing, fundraising, and education—all appropriate according to Charity Navigator since ALS is not something that will be cured overnight). That research has been fruitful. MT Pharma benefits from that and ongoing charity-financed research. Again, I ask MT, Do you have to make that much profit right away? What you’ve spent developing Radicava is tax-deductible business expense, which lessens your financial exposure. Can’t you make the drug more affordable?
I know they aren’t listening. But I can hope.