Thursday at the end of Morning Joe, the roundtable invited Darcy Olsen of the free-market think tank, the Goldwater Institute, to discuss Gov. Jerry Brown's veto of “Right to Try” legislation in California. The discussion centered on the book “The Right to Try” and the legislation surrounding the effort. Mika Brzezinski began: “Darcy is a leader in the “Right to Try” movement, geared towards giving terminally ill patients access to experimental drugs. She is out with a new book "The Right to Try," how the federal government prevents Americans from getting the life-saving treatments they need. It seems to make sense, why is it so hard? What gets in the way?”
Brzezinski inquired of Olsen, “Wouldn’t you obviously have to sign some sort of disclosure, that you’re willing to do this no matter what happens, I mean can’t you? Can't the government separate itself by putting in some legal paperwork?” As Olsen explained informed consent, it basically amounts to “I understand everything hasn’t been tested, but I am dying and I am willing to take this chance,” and would give the terminally-ill patient, or even child, access to medicinal trials to see if the medication would help.
An interesting exchange also occurred in the roundtable, when Jonathan Capehart addressed the vetoing by Governor Brown and inquired as to the details of it, and reaction to the veto.
JONATHAN CAPEHART: We think of California, we think of California as that one state where, you know, if there's something experimental either legislatively or otherwise, they're going to try it. Were you surprised that California, Governor Brown, rejected “Right to Try” legislation?
OLSEN: So this has passed across the country on a 9-1 yes margin. Governor Brown’s veto shocked everyone. It had passed unanimously in the California assembly. I think what really frustrates patients is they say you've signed legislation saying it's okay for me to take a drug to hasten my death but if I want to fight to try to live for my children, for my spouse or myself, that's not okay? So we think they'll take it back to Brown for another answer.
The discussion put a focus on the humanity of giving terminally-ill patients a chance, and the fight legally that pro-life organizations have fighting for the patients' rights.
See the relevant transcript below.
2015-11-12-MSNBC Morning Joe
MIKA BRZEZINSKI: Alright, it is 50 past the hour, joining us now, President and CEO of the Goldwater Institute, Darcy Olsen. Darcy is a leader in the “Right to Try” movement, geared towards giving terminally ill patients access to experimental drugs. She is out with a new book "The Right to Try," how the federal government prevents Americans from getting the life-saving treatments they need. It seems to make sense, why is it so hard? What gets in the way? I mean, when you have no other options, right?
DARCY OLSEN: A million Americans are going to hear from their doctors this year that they have no other options left, they need to get their affairs in order. And what physicians really mean is that in the toolbox of government-approved treatments, there are no options left. But the fact is, there are thousands of medicines and even cures, awaiting the FDA's green light. And many of them are already available in Europe. So what we are saying with this movement, and 24 states have adopted it in the last 18 months: if you are terminally ill, you ought to be able have access to those treatments, even if the government hasn't given a final green light.
BRZEZINSKI: Wouldn’t you obviously have to sign some sort of disclosure, that you’re willing to do this no matter what happens, I mean can’t you? Can't the government separate itself by putting in some legal paperwork?
OLSEN: Absolutely. It's just like with clinical trials that sometimes people are able to get into. It's the same drugs that are available in those in the trials, and you sign something called informed consent and it just says, I understand everything hasn’t been tested, but I am dying and I am willing to take this chance.
DORIAN WARREN: Darcy, you said something important just then. These medicines are accessible in Europe. What is it that European understand that our country doesn't and secondly, what's the role of the pharmaceutical companies in this process?
OLSEN: About 30% of the cutting edge medicines will come out in this country first. I've called for reciprocity in this book. If it is available if Europe, for heaven sake’s, it should be available here, that’s simple. The role of pharmaceuticals varies, companies come in all stripes, just like people. Some companies really want to help people have access, some say we don't want to do anything until we tested this for 25 years. You're going to see a huge variety in terms of manufacturers’ responses.
BRZEZINSKI: Jonathan Capehart has a question, Jonathan.
JONATHAN CAPEHART: When you were answering the initial question, we showed a story from the Los Angeles Times featuring Governor Jerry Brown of California and the interesting thing here is he just vetoed “Right to Try” legislation, but on the other hand he approved “Right to Die” legislation. And had we think of California, we think of California as that one state where, you know, if there's something experimental either legislatively or otherwise, they're going to try it. Were you surprised that California, Governor Brown, rejected “Right to Try” legislation?
OLSEN: So this has passed across the country on a 9-1 yes margin. Governor Brown’s veto shocked everyone. It had passed unanimously in the California assembly. I think what really frustrates patients is they say you've signed legislation saying it's okay for me to take a drug to hasten my death but if I want to fight to try to live for my children, for my spouse or myself, that's not okay? So we think they'll take it back to Brown for another answer.
BRZEZINSKI: What kinds of drugs and terminal illnesses are we talking about? These people are suffering and then they have to deal with this red tape. And then I would like to know the other side of this. I mean, maybe why, you know, in some cases there's some pushback?
OLSEN: So you're talking about people with brain cancer, lung cancer, children with Duchenne muscular dystrophy, patients with Lou Gehrig’s disease where there basically are no treatments left for these folks the pushback it’s limited. It basically comes from people who want to make sure that patients are safe and they don’t want anybody to give somebody something that won’t help them. But you know, one of my friends we call Lazarus. He's Ted Harada, and he should’ve passed by now, but he actually got into a clinical trial and he is walking 5Ks. He said let me tell you something about safety. If I don't get these medicines, Lou Gehrig's is 100% fatal, I’ll take my chance. We say, let's put the life boat in the water, maybe the life boat hasn’t been approved by the FDA but if it’s the only thing available, I think I'm going to jump in.
BRZEZINSKI: You have a chapter called “What Steve Jobs Saw,” so you look at his case?
OLSEN: So I look at Steve Jobs case. There's a particular treatment for cancer that many physicians across the world think is better than chemotherapy for many of these types of cancers. A lot of people go to Basel, Switzerland to get it. He, I my understanding is, he was one of them. But you know, we have a system today where if you are wealthy enough and have the resources, sometimes you can avail yourself of these things. 99% of Americans don't have those resources and of course, frankly, if you're terminally ill, you can have all resources in world and you still want to be treated near your home and with your family that's what compassion is all about, and that’s what “Right to Try” is all about.
BRZEZINSKI: Very compelling, the book is “The Right to Try”. Darcy Olsen, thank you very much for being on the show this morning.
