A couple of weeks ago, we posted several videos on our site regarding Hemlibra and the recent fatalities report. We received a lot of good responses and a lot of bad responses to those videos. For example, I had one mother email me and say, “Hey, Jesse. I talked to my physician. My physician said the manufacturer says the deaths were unrelated, and there’s nothing to worry about and you don’t know what are you talking about!” I responded and said, “So you’re just going to go off of their word? A pharmaceutical company’s word is good enough without any supporting documentation, evidence, autopsy reports, no nothing?
This is the same poor thinking the hemophilia community had back in the ’80s when we had the bad blood scandal. NHF sent out a memo to the community telling people to keep using the products and, guess what happened, the products contained HIV and Hep-C, and thousands of people died. I mean, at what point does the community start to ask questions?
Right now, we have 10 unrelated deaths. What number is it going to take for people to start asking questions? 15 deaths, 20 deaths? I mean, what number? 10 deaths is okay right now for the community, but what number is it going to take for people to start asking questions?
There’s one thing that the hemophilia community should know is that the Learned Intermediary Doctrine. What this doctrine is is that a pharmaceutical manufacturer fulfills its legal duty to warn by merely providing an accurate and adequate warning to the prescribing physician. The manufacturer has no legal obligation to warn the consumer directly. The risks that the manufacturer would have been responsible for are then shifted to the prescribing physician.
So what does this mean? It means if something happens to you while you’re on Hemlibra, you can’t sue Genentech. You have to sue your physician because your physician told you about Hemlibra and its related risks. So, for example, if something happens and you are the caregiver or the parent of someone who died because of Hemlibra, you can’t sue Genentech because Genentech is going to raise this defense of the Learned Intermediary Doctrine. Genentech’s the manufacturer. They’re the ones who have the money. They’re the ones you’re trying to go after. So now you have to go after your physician and do you think your physician has money to cover a wrongful death lawsuit? No! You better hope they have insurance.
So here’s my argument. Genentech has a website called EmicizumabInfo.com. You go to this site, you click on patient, you scroll down, and then there’s a link to the recent death report. By Genentech doing this, they are essentially directly communicating the deaths to the patient, not to the physician, because it’s on the patient side of the site. So technically they are waiving their right to use the learned intermediary doctrine. So you could technically raise this as a defense if you are sued them.
HemoAware sent over a letter to Genentech explaining that you have a website up called EmicizumabInfo.com, and you are directly relaying this information to the patient. But they also have another website up called Hemlibra.com, and that’s where most of the patients are going because it’s a lot easier than typing out Emicizumab, and that they should put this info also on Hemlibra.com, because patients need to know about it. If you’re going to put it on one site, why not the other site?
Since Genentech doesn’t really care about the hemophilia community and not even responding to HemoAware’s letter, we have set up a website called HemlibraFatalities.com, and this is a website where you can go now. It is live and you can fill out the contact form, and if you are in a situation where a family member has died while on Hemlibra, please contact us using that form, so we can gather all of the information, gather all of the evidence, so we have it on record here at HemoAware, because Genentech isn’t going to tell you anything. So again, you can go to HemlibraFatalities.com or HemlibraDeaths.com. It just redirects to the same website, so it’s easier for you to remember if you want to do that.
This is just another resource HemoAware has set up for the hemophilia community because we care about the community. We are concerned, and you know, Hemlibra may be a great product, and it may not be a great product. We don’t know. But we are trying to gather all that information for you.