Jordanna Mora, Associate Director of Medical Affairs, Alnylam Pharmaceuticals, Inc
0:00 The Alnylam Act
5:56 Patients often misdiagnosed
7:37 When are you expecting approval of the new RNAi drug?
9:44 Any pushback for conflict of interest?
It seems to be human nature to value and pay up to hundreds of thousands of dollars for a little white pill that we can drop on the floor--and granted, can do wonders for us, but we want to pay nothing or very little to be told what is wrong with us so that we might know which little white pill to use in the first place.
So let's talk today about the The Alnylam Act, a program to shake up the business model in diagnostics and genetic testing on behalf of patients. The Alnylam Act is what it looks like when a drug company gets proactive and says, hey, we will step in and pay for patients to be genetically tested and counseled for the diseases on which we are working.
“We did this to reduce barriers to genetic testing—and the delays are often pretty long in rare diseases--so that individuals can make more informed decisions about their health.”
That’s today’s guest, Associate Director of Medical Affairs at Alnylam Pharmaceuticals, Jordanna Mora. And just to say it again, you understood her right. Her company, Alnylam, is paying for patients to be genetically tested and counseled.
Is Jordanna hearing any pushback over conflict of interest? After all, the patients who would be testing positive might be candidates for Alnylam’s drug.
The therapeutic we are talking about here is not on the market yet. In theory, it is set to be approved this August, and would be the first of the RNAi drugs. It will be an exciting day for the company, for patients, and for the drug development industry as a new class of treatments is born.
After years of seeing the diagnostics industry struggle to win reimbursement for their innovations, it's refreshing to hear about a drug company filling in the precision medicine gap for the good of patients, many who get misdiagnosed or wait way too long for a diagnosis. Will the Alnylam Act be a model for other drug companies?
“There are a number of companies doing very similar programs, and I think its fantastic,” says Jordanna.
We go for just over 15 min.