cleveland also. youngstown. they put their minds to it and have come up with new things. >> host: how has technology changed how we extract ore and work with steel. >> guest: in a way it hasn't changed all that much. ..

health reporter for u.s. news & world report. they make their sales and write you back for joining me to talk about your new book. i am so looking forward to speaking with you today. >> guest: thank you, kimberly. i first wrote about a year ago and at that time only finds it had passed right to try laws. now it has really climbed a 24 state. pretty quickly in one year and one of those senators, state senators who support this bill says that was the first piece of legislation he had come across that was both pro-life and pro-choice. let's talk about what right to

try laws are. >> guest: it is all about when your life hangs in the balance, when you have a terminal illness. it is about giving you the right to try to fight to save your life by accessing experimental investigational medicine why they are under study at the fbi that before they receive the final green light. the reason he calls that both pro-life and pro-choice is because you have a choice as to whether you want to try some of these investigational medicine and pro-life because instead of right to die laws, you have not only the option to fight to live and prolong your life. >> host: in her book, you talk about how the goldwater institute got involved in this cause and you immediately dive into how it affected you in your

personal life when you heard about this issue. i'm going to read a passage quickly from your book. you read about your uncle kenny. he wrote he died from hodgkin's lymphoma in form of cancer from which there are multiple treatments with high cure rates. he was my fathers only brother and i distinctly remember my dad saying when i was growing up that uncle kenny had died just months before new treatment was approved. at that moment it hit me if kenny had been around earlier my father might still have his brother and my cousins might still have their father. as mentioned earlier, the legislation has passed quickly and unanimously in a lot of states. do you think having a story like that in the story you tell here with a lot of legislators who can immediately identify their own family or friend that lives instances where it happened. >> guest: we have all had people in our lives like my father, my uncle kenny. we bought known people who have suffered from terminal illnesses.

many of us have known people where the curious came onto the market for the best available treatment came on shortly after they pass. this really hits home for a lot of people. one legislator told me this is a two minute decision on the first one is for coffee. this is something that is common sense to people. of course you should have the right to try and fight for your life. if something hasn't been tested in clinical trials if it's safe for human consumption and somewhere along the 16 year development process and the only alternative is you are going to die, you should have the right to try those investigational treatments as long as you know the risk you are taking. >> at the beginning of your book you write about a month it has two sons, both with muscular dystrophy, that affects the muscles. one of the children was able to access experimental drugs. the other was not. can you tell us the story and go

into detail about what happened there? >> guest: in "the right to try," jan mcnary i tell the story at length and i read about jim story in the burlington free press up in vermont. two of her sons, she has four children, but two of her son have muscular dystrophy, which basically will cripple the boys and most boys who had this will not live past their 20th birthday. one of her sons was able to get into a clinical trial and he was doing extraordinarily well and he went from being in a wheelchair part-time to being able to play soccer and be on the playground. really incredible progress never before seen. his brother on the other hand did not make it into the clinical trial. they had very strict criteria and he just didn't qualify.

so he had to watch as his brother went out onto the soccer field and he was deteriorating and he got to the point where he couldn't even hold a cup of water to his lips. this is a situation today in the united states. if you are lucky enough to get into a clinical trial, any patients find improvements and many have been cured. the challenge is that it's about a 15 year process for that particular treatment to ever make it to market. in the meantime if you don't get into the clinical trial, you die. the right to try is about saying what david is good enough for people in clinical trials, it is good enough for all the people who need it at this time. they should be a little make the choice as long as they know that there are risks in some things that are still not quite proven. how much efficacy, exact dosing and insight that. >> host: when you first got involved with the goldwater institute come you decided to go

after it had a state level, targeting state lawmakers. why did you do that instead of going after congress because the fda is the federal agency. >> guest: it would be wonderful to see washington reform this in one fell swoop. they have the power to do it. in fact, the sba already has rules and regulations that enable it to help a lot more people than it chooses to do. but we know that it's been 25 years in the fda has made any major reforms that seem to really affect large numbers of people with this terrible terminal diseases and diseases for which there are no treatments. so we decided to go through the state legislatures and of course i think you mentioned at the beginning of the program the states -- 24 states have adopted this law in just a little bit over a year. it has lived with almost unanimous support on about a margin of 99 to one.

it is left, right and everybody in between type of issue. >> host: in going after this issue, why did you decide to lose his or her site. what about, multiple sclerosis, someone with debilitating pain, why focus on terminal illness when there are people who are living with difficulties in other ways. >> guest: well, we designed this law so that it will prevail in the u.s. supreme court should the fda tried to challenge the authority of the state. and we know that one of the things in previous cases that has been important to the chorus is the safety question. focusing on folks with terminal illnesses where their lives really to hang in the balance, where they really have no other option changes that equation. we are not talking about brushing medicines for teenagers with pimples or a cough medicine. this is for boys with dmd.

this is for people with lou gehrig's disease who might have two years to live when they get their diagnosis. you know, as the mom i talked about that to me once, by the time the fda finally approved this particular treatment, we will have lost an entire generation of voice. that is unacceptable and we moved this to the state because we could get the action that patients need. >> host: the food and drug administration is responsible for overseeing whether states are affected and i did talk about this issue ahead of our interview and they point to the fact that they have clinical trials available for which people can enroll to try these different treatment than they also have something that is called compassionate youth in which you can apply for access if you are terminally ill and outside this criminal trials. can you give me more details about this and explain why

passionate uses an enough to ensure people can get access to life-saving treatment. >> guest: that's right. the fda does have a few programs on a clinical treatment programs called compassionate use and it to post to help patients in situations like this. the fact is less than 1% of patients with terminal illnesses will ever get access to these treatments. the program was never designed to help hundreds of thousands of people, let alone a million or so who will be given terminal diagnoses this year. under the fda rules, compassion is an exception to the rule. what we are fighting for is to make fighting the rule. >> host: how does the whole process work? how does the application work and how does that take? >> guest: the fact that 99% of patients never make it through

till you about whether it's working or not. we know for instance for cancer patients i must have looked into a clinical trial and only 3% believe and get in. we know patients on access to the treatments and we know they are not getting them. the reason they don't get them, there are many. one of some people don't know about the program. but another one is that the process is so incredibly time-consuming that post physicians and doctors simply can't navigate the system or have the time to do it. by the fda's own admission, just the application paperwork requires literally over 100 hours of a physician's time. it is not something he can give to his assistant or intern to fill out. the.yours to do this basically clear their desks for two and a half weeks just to do paperwork for one patient and you can see how if you have hundreds of patients which physicians do,

and this is just not a good solution. of course there are tremendous delays. in transvaginal heartbreaking story about a girl named andrea stallone, a young girl who was in her 30s. she had ovarian cancer and she fought hard for seven years and she had exhausted all the conventional treatment and her doctor i believe is the m.d. andersen center and says there is something that can help you. we have to go through the compassionate youth process. he'd never seen the process used in more than 10 years. it is sort of this mythical unicorn, but he was an incredible physician. he went through the process and did all of the paperwork and it still tucked the fda 24 days to turn around their decision. they say they turned it around on the spot. the fact is they don't and by the time she got the treatment

it was too late even though it was started to reduce the tumors and they were beginning to see shrinkage. they passed on. in texas, her friends and family thought hard for the right to try law. it was too late for andrea, but we are grateful it will be in time for other patients who need it. the food and drug administration also told that when i reached out that they are working on shortening the form. in a 24 days and they have a 30 days. do you think shortening the form will help this a little bit as we wait for more right to try laws to pass? >> guest: it is fine but it's really window dressing. from a position of principles, you shouldn't have to beg the

federal government for permission to try to save your own life. >> host: the person in this situation has your best interests at heart who knows your case in hideout, the first person is use the patient and the second person mr. physician. frankly there is no role for the sba in an investor in compassionate use. it is not what the agency was designed to do nor is it something the agency truly desires to do. when i was conducting interviews for this book, we interviewed the head of the center for new drug development at the sba and we asked the theoretical question of what you endured what you endured like to see tens of thousands of patients accessing compassionate use, given the chance to try some of these promising and more cutting-edge treatments. she tried it and she's sad it would be another burden on the

health care system. that attitude is quite prevalent throughout the bureaucracy. i am not saying everyone there has that attitude. there are credible people fighting for patients there. as an asian state, its job is not to treat patients. its job is to approve for the market. it is for officials to decide whether some thing is indicated for you, whether you need that to save your life, prolong her life, help you through other treatments. we would like to see the fda not have a role in this particular aspect of compassionate use. they really should be between the physician and the patient and the fact that is how the system works in europe. >> host: you talk about how you've approached the state legislature to pass these laws and in most cases they've passed almost unanimously. in a few cases where state

lawmakers have not voted in everett is lost, would have been some of the reasons they've given or the things you've heard where they might have hesitation about passing these laws? >> guest: well, it is passed on the 99-1 market so it is very, very limited. one is people are concerned about safety and that stems from a misunderstanding about what the right to try as. this is about equity. this is extending to all patients with terminal illnesses the same treatments that are already available in clinical studies and the fda high-fat or okay to be tested on people for scientific purposes. we say how about to kill them and for them to extend their lives. the safety issue really stems from misunderstanding. we've had some hospice organizations opposed to because if you are fighting for your life at the end, often hospice

can't treat you for the insurance for hospice will not cover you, so there can learn if they are probably going to die anyway, even if they try this and we want to make sure they get quality treatments. we consider those logistical issues so that should not be hurdle to trying to save your life. in fact in europe where they have widespread compassionate use common insurance companies to help cover treatments. a lot of these things have been thought through before. a few voices of opposition in the united states i feel calm from perhaps a misunderstanding of what the right to try is auric quest for absolute perfection in urgency and a system where would terminal patients they don't have the luxury of waiting for statistical perfection. >> host: i know you are approaching this from a state

measure, but i'm wondering if you've heard anything from presidential candidates are if you've been able to meet with any of them to discuss right to try laws. >> guest: we haven't taken us to the presidential candidates. frankly we have been so busy in the states moving this along to working at the federal level is really an afterthought. it takes so long to get any reading as far as reform through congress that we really felt like time is that the essence. we needed to move quickly. once the issue is brought to our attention, and in fact, have the issue even became an issue was that the cancer treatment centers for america have learned about some other work and they came to us and said we have can't her patience that we want to treat and we know that for some of the most effective treatment that are out there are pending approval at the sba or are in europe or other places of the world. is there anything you can do? is there any way to help us be

able to improve our patients access to these treatments. we are in the business of curing people and we are being stymied by these roles that make you a 15 years for a drug to come to market. is there anything you can do? time is that the absence, so we focused on the state legislatures where people are closer to their constituents and in every state where this is passed, we have people testifying with all sorts of diseases. lou gehrig's and cancer and muscular dystrophy and all sorts of really, really trying to illnesses and policymakers feel that they see those folks and as we mentioned earlier, almost all of us had an experience like this in our immediate families and certainly in our friendship groups and no matter what your politics are, your heart really

goes out to people and we would all like to see people access treatment if they can possibly be available. >> host: you just talked about the availability of some drugs in europe and a chapter in your book you tell stories about patients who travel across the world to access drugs that are still being developed and showing a lot of promise. can you tell viewers about the stories? >> guest: many of the drugs in europe have been the standard of care for 10 and 20 years than they been fully developed if for whatever reason have not gone through the fda process. one story in particular about a boy named diego morris. diego was a latin. when he was diagnosed with osteosarcoma which is a type of bone cancer and is quite an athlete. he noticed the pain and women and got a diagnosis and to make a long story short, the doctor said the best available treatment for you is not

available in the united states and you need to go overseas. he and his family moved to england for almost a year in order to get the treatment they saved his life. that drug is called the pact and it's been the standard of care in europe for some time, also at israel in two dozen countries. when they tried to get the same drug approved in the united states, even after it was already the standard of care and all the tags show the efficacy had come out all over the world, the fda demanded the company tasked on 900 people in its clinical trial. 900 patience, that is more patience than will be diagnosed with osteosarcoma in this country and ear for this particular type. sometimes the fda, they are just

not willing to look at other evidence and they come up with things that are insurmountable barriers to get these things approved. here you have something that is the standard of care, as life-saving and the only people who can access it are people who afford to go abroad. we all know patients who can afford to travel abroad for treatments are few and far between. >> host: some of the criticisms of rate to try to say that the one up cases get in the way of correcting data and some pharmaceutical companies can be a little bit nervous about providing these drugs because whatever adverse effects occur in people has to be reported to the fda and as you mentioned earlier, clinical trials are controlled in terms of who gets chosen to appear in these clinical trials. what are some of your responses to concerns like that? >> all of these things haven't worked out in europe.

first of all i would say we don't have to re-create the wheel. we can take the lessons learned and apply them here. one of the things this positions in patient actually want when they get these treatments, they want to contribute to science. they want their information recorded. people have talked about opening clinical trials for you that more people in with more conditions. it is more reflective of the real world. there is this talk in clinical trials looking for a lease with tumors. in other words, they want to focus on just that treatment, but the reality is most patients have multiple conditions going on and they are excluded from clinical trials. the something like the right to try when you have a bigger sample of people and you record the information, you can end up oftentimes with better scientific information that will better serve patients in the long run.

those are some of the things we are talking about. with companies there's a second point you raise. many companies are concerned if you treat patients who are close to the end, which by definition under the right to try laws, these are folks that have terminal conditions. they've exhausted all the standard treatment so they are near the end unless they can get something that will help them. they know there is an increased risk of what they call and adverse event happening. if the fda looks at that emancipation debt that they will say is that treatment rather condition of the patient. i don't know how overstated or if that is actually stated. i hear talk that the fda would slow down trials, or ask them for more trials which of course would increase their cause.

the fda has seldom done not in a way that we've been able to find. that said, in defense of the companies, right now it takes an average of $1 billion or more in about 15 years to get a treatment from the beginning to do and on pharmacy shelves. so it is understandable if they don't undertake any additional risk. to raise that kind of money, especially where most of the new developments are coming from is an incredible hurdle. they are saying we can't afford to take any risk the fda might delay the final approval by treating patients who are in tougher circumstances. those are real concerns. on the other hand, i've also spoken to ceos who are in favor of the right to try and

one in particular i spoke with has a product that is in stage three at the fda, which means it's very close to coming to market, within two to three years. but for the particular disease the drug is designed for, it is very rapid. i said why would she be willing to treat patients who are at the end went in a few years he'll be on the market with your product in the fda won't have any trouble with that. what he said to me was darcy, by the time the fda finally approved for treatment, not a single one of my patients will still be alive. so you also have ceos of some companies who are concerned with the bottom line is that they are also concerned with patients. what you are going to see is a mix. you'll see, means that are very coldhearted and for the life of

them they will not give anything to anybody until the fda says it does okay. and you will see others who say i'll be if i lose one or patient and i will start treating people today. we know people are treated under the loss today for just that reason. >> host: when you talk about the ceo comments at the same when you talk about in your book? in general, they have been reluctant to say anything about right to try laws and they default to the fda. the ceo you talk about in your book had a different position. tell us about the story. >> guest: so, one of the ceos -- many people wanted to be off the record but this story in the book is about richard garr. the ceo of a company called an extraordinary company developing all kinds of treatments for patients in terrible conditions. his company five years ago in a

clinical trial treated a patient by the name of ted marotta. we actually called ted lasser is because ted has lou gehrig's disease but instead of being in a wheelchair or pass on which was his diagnosis, he is actually the first person to have ever recovered from als. what ted will tell you is it's been five years since he was able to get the treatment and in the meantime, 24,000 patients in this country have guided luke eric's disease. why should only third teen people lucky enough to get in the clinical trial be alive today? i know one of the words in someone's mouth, but i cover him extensively in the chapter. he believes that too would like to see more people getting

access sooner because this is the difference between life and death. he himself tells the story of the book about his own son who when he was young and had a brain tumor and what that was like as a father and i tell that you're in the book. >> host: how is ted doing now? >> guest: tag is doing great. it is just a remarkable story to see him with his wife and kids. every day he speaks in spiritual terms is a blessing. he talks about the importance of right to try and giving people the right to fight for their lives even when it seems hopeless. people tell you that with lou gehrig's disease. they tell you to go home and get your affairs in order. they are not telling you that to be heartless. they are telling you that because there aren't any good treatments. just in the course of writing this book with high people who have testified with lou gehrig's who have passed on and it's absolutely devastating and

heartbreaking. ted wants other people to have what he's had. the irony about ted being treated in the clinical trial is once you've been treated in the clinical trial because of the fda's protocol, he's no longer eligible to be retreated with this particular treatment. so should his lou gehrig's disease come back in full force, he is ineligible. he could be the first one to recover from lou gehrig's disease and he could also be the last person to die of it. >> host: soviets anymore the drug to continue to improve? >> guest: it is possible. but they've been able to determine so far is the higher the dose, the greater the advocacy. it looks like it is something he may need again. he is doing well. you can't run a full marathon

but he can walk a 5-k. history in his arms. he is no loss of lung capacity, full of movement of limbs. patients with als, retaining lung capacity is a miracle. so this is not -- i don't know we would say it's been entirely of women made it, but the doctors don't see many signs the way they do in a typical patient anymore. there were others in the trial who had some pretty spectacular results. >> host: really incredible story. is there any clue as to when the drug might hit the market? >> guest: i haven't talked to richard about that in a few months. i would encourage people interested to go and look at the company's website. i know richard cardin ceo answers a lot of his own e-mail firsthand which is who does that these days. it's quite remarkable.

that is one way to talk about that. also heard another treat that are quite promising and i don't with the names of all the com. there's a lot of traffic on this and a lot of patience talking about different things. one of the messages that i hope people listening today will take back to their loved ones or even for themselves is that it's good to have hope and there are some things out there for a lot of bees ... that people may not be aware of. we are hoping we can hope to gain access to the best available. the way to do that is through legislation. i want to go back to one part of the book to read directly. in recent years activists on the left have gone to the states to pass an initiative on from medical marijuana legalization to the right to assisted suicide.

the states have agreed to give citizens access to marijuana and drug stew in their lives and cancer patient access to investigational medicines to save their lives. one of the recent developments occurred in california this year. governor jerry brown who is a democrat passé right to die law which allows physicians to provide life-saving drugs to their patient. he however vetoed the right to drive out which was a little bit surprising to some people. here's what he wrote about the right to die law. he wrote i do not know what i would do if i were dying in a prolonged and excruciating pain. i am certain however it would be a comfort to consider the options afforded by this bill and i wouldn't deny the right to others. that's what he wrote about right to die. when asked about right to try, his letter supported the compassionate use clause and said the state shouldn't get in the way of that. were you surprised this was the

ruling and what do you think of those arguments? >> guest: i think it is an absolute shame. the law passed unanimously in the california assembly and there were a lot of patients who would've understood it from the right to try. essentially what governor brown told people was low, you want to end your life, that is fine with me. that is your value. if you want to fight to save your life, i like the fda worked that out. i'll give them a little more time. the fda has had the compassionate use program for 25 years. i think they've had enough time and so do most patients. i believe you'll see the california assembly go back to governor brown. this is one of the most outrageous things that we have seen.

the supported the right to terminate but not to fight to live. i think people who have supported governor brown feel like that is so fundamentally anti-freedom, anti-everything we stand for in america and trying to fight to save your life. it is not to dismiss the right of people who decide that they want to hasten their death through the right to die laws, but many people if given the option would choose to fight and they ought to have that right. it is their choice, not the government. what governor brown has done is absolutely shameful. postcode let's talk about the logistics of these laws. let's say you live in a state in which ray to try has been passed. how do you go about trying a drug and what are some of the steps you need to take and what are some of the requirements to access these drugs?

>> guest: i have a chapter about how to do this in the book, kind of a little hand dyed look if you will in one of the chapters. we have at the goldwater institute helped patients and not yours navigate the system and we are glad to do that to the best of our ability. we are not large, but we will do everything we can. in some states physicians don't know what to do yet. this is part of implementing change in the way treatments become available to patients. what it boils down to is a physician needs to believe that a particular investigational treatment is indicated for you and i have the information. they can look at the clinical research and patients often times have the information before.there is because they are exchanging every little bit of information as it becomes available when it's released from clinical trials.

they are their own best advocates. the physician needs to think something is indicated for you. in some states it may be two positions in each state the law is a little bit different and the manufacturer or the maker has to be willing to give it to you. you can't force the company to do that. if so, the treatment can be administered. postcode let's say the drug exists in another state. how would a person go about accessing it in another state? what are some of the logistics about getting the drug to the person? >> guest: okay, so if you are a patient and you have the right to try in your state and the manufacturer is in your state cannot use will be simpler for you. if you are a patient in a state like california that does not have the right to try, you can travel to almost all of the

other 24 states that have adopted this allow you to come in and get treatment in the state. you can go into that state and as long as you can find a physician that are who indicate the treatment for you, you can go ahead and get the treatment. if you are a manufacturer, you can shift your treatment across state lines we believe without violating state law. why is that? under the right to try laws, the treatment are ready has an ind from the government. it has a number because it's undergoing clinical trials at the fta already that is what permits the transport across state lines. the manufacturers can or do you do this. as we said earlier, these drugs are being developed. they are clinical trials in phase two or three said they are moving quite far along and this is just about opening the door a little bit sooner to people who

don't have five or six years to way. maybe they only have five or six weeks left and whatever the treatment is maybe just the thing they need to be able to live. >> host: can you walk us through the different phases of clinical trial story viewers understand what the drugs are doing when they might be able to access them and what risk they may be taking. >> guest: yes, the process in general is that seniors to take a drug for the research stage to the pharmacy shelves. there are three main phases at the fda. before you can get into the first phase you have to spend basically millions of dollars testing your product in animals and in other ways. you have to have quite a bit of data before you can even get into phase one. phase one is what they call basic safety testing. it is for the product is tested on people for the first time in

basic safety is shown. phases two and three are really about efficacy and dosing. how much is something unique, like we were saying, the more he had, the better he did. and what the right amount of that dosing might be. somewhere between 20% and 60% of the drugs in two or three are ultimately will be given the fda's green light. many will not, but many will be picked something else important for people to know is just because drugs ultimately don't clear the fda, it doesn't mean that the drugs are in effect give. it may mean that the drug is not effect within a large enough population for it to be valuable to the fda. but it may sell 5% of patients. so you will see what many people

were much more expert msn im. you will now see talk of i believe it was the nih that was revisiting over 100 failed trials for cancer treatments and they are retesting all of these different drugs in checking them against different genetic markers because if you have a certain type of genetic -- if you have certain genetic so the effect is for you. maybe it doesn't help 95% but it helps 5% in a be the thing that helps you. science has come far enough along that we are beginning to get to the point where we can tailor medicines for individual. on the fta process by a march has not learned to accommodate that yet. that is going to be critical in medicine will be a completely different ballgame 25 and 50 years from now.

>> host: we talked about clinical trials with years and years. one that comes from my immediate is that the map to has not even been tested in human, yet it was used as experimental treatment to help those who have been worked in west africa come back to the united states. does that make you feel as though there are exceptions that could work out and how do you respond to some thing like that? >> the first thought that comes to mind is i'm extremely grateful that people were able to take it and saved many lives and people all over the world are very grateful for that even though it had never been tested, it was what they thought would be the best available. all of the rules -- all the

regulations were often people got treated. it was an emergency situation and is fantastic and saved lives. we wish the fda would do more of that. but we did at the goldwater institute under the freedom of information act we asked the fda to tell us about the decision-making process they use to judge that the bowler was such an emergency that all the rules and rexroth a table that they could immediately give some into people even though it had never been tested in human beings before mlb's patients with terminal illnesses can't access medicines that could save their lives. jen mcnary, the mother we talked about with the two boys with muscular dystrophy said, you know what, and dmd is an emergency to my son and that is a fact. it is an emergency. it is the same of ebola.

your life is on the line. the fda refused to share their decision-making process and we've taken him to court to force their hand. the fda right now has the power of life and death over americans citizens and regardless of what you think about the right to try are the policies i might be promoting today, the american people have a right to know how the fda is making decisions that will lead some people to live while they leave others to die. >> host: the ebola example for some people are critical or skeptical right to try laws, they said to me in interviews that had that they are concerned right to try laws will only be able to be accessed by people who have a lot of money or who have a lot of connections and resources. how do you respond to that sort of criticism? >> guest: the current system

is one where we have a terrible situation like that for the treatment is only available in europe, who do you think can go to europe? the poor? we have a situation right now in europe they will develop about 30% of the most innovative cures and treatments and we'll get to market they are before they do here. if you are steve jobs and i have a chat to your bid includes hand in their. you can go abroad to get some of these treatments that may be standard or investigational. if you are a regular person in this country, you can afford to do that, let alone the fact you don't have the help to go overseas and be treated for a year. the current system is one that i hate to say favors anybody because all patients should have access to these things here. but if anyone is favored, obviously is the people with the resources to build a grower brought in the these treatments do not defame with compassionate

use. if you have good resources, you are much more likely to be able to find a doctor and to compensate a doctor for taking 2.5 weeks literally to clear their desk and do the paperwork required to have the connections in congress that will prevail in a company to release a drug for you or for your loved ones. regular folks get the door slammed in their face. i tell the stories in the book. what the right to try does to me is the great equalizer. if your physician says something is indicated, you could be in the rural part of the country, have almost no money. but if he says it is indicated and you can find a company to give you that manufactured at a cost of file they can charge, you at least have access and that is a far better situation than the one we have today as imperfect as it may be, it is still far, far better, a great

improvement. postcode to charge you mentioned is to travel from date stated and who mentioned that? >> guest: i mention europe a few times that i like to look there because they've been through this. they've done this and there most of the insurance companies will cover investigational treatments because investigational treatment are more standard for people. so we would expect the insurance industry to follow suit and come along. right now they don't cover -- most companies don't cover experimental treatments because patients can't access them. they're asking insurance companies to do something for which there's never been a market. at this point in time, we would expect patients would so pay and we also know that there are many companies right now when they do

have compassionate use or clinical trials will get the product away for free or they will charge just the cost and production which under the law is all they can charge. they can't make a profit. they can't take advantage of people. that cuts both ways. here we are with people with their lives in the balance and many of who would be willing to pay just about anything to save the lives of their loved ones and were asking companies to give something away essentially that cost a billion dollars to develop. if you are merck, a billion dollars is a drop in the bucket. a lot of the most innovative treatments are small labs but forgot yours commodified.yours, 10 doctors. they don't have a lot of drug available in even though they might have the willingness to part with it if they did. so those are real challenges and those will need to be tackled. the system is not going to be perfect. but at least the right to try it

opens the door and he begins to get the movement going and that is critical. >> host: so you are deemed insurance companies with the possibility? what you hear from them? >> guest: i have not spoken with insurance companies yet, but i've spoken with people who are working overseas with insurance companies than they are telling me they have a strong sense that companies will come in to be helpful with this. i think it will take a little bit of time. it is interesting when you talk to their patients about this, this is a great era for discussion and everybody wants insurance to cover treatments. the patients are saying, you know, don't let that be a barrier to make treatment. if i have to hold fund raisers so i could live to see my kids grow up, i'll do it. sorry to get choked up, but real people's lives are at stake here.

the insurance question is a real one it would want to address it and want to deal with it. let's not let that be a sentence for people today. >> host: what extent do people -- i know they are still new, but to make use of their right to try laws like can you tell us about people who have done so? >> guest: of course no one is required to come to the goldwater institute and let us know they are either being treated or that they are treating patients under the laws, but we've had multiple people come to us, patients and physicians who have entered into treatment and are being treated today. that's the most i want to tell you because i want to respect their privacy, but we do know there are treatments occurring and people are beginning to utilize the laws as new as they are. we are so glad to see that. i hope what i've been able to see and what's been reported to

me or my organization is only the tip of the ice berg. i hope many more patients are treated in positions are gearing up to treat people under these laws. many folks wrongly believe only the fda or federal government has the authority to permit these treatments and that is a myth. in fact, the right to die we been talking about 10 years ago when oregon passed a law, the federal government said you can't do that. that is within our purview. they went to court in the u.s. supreme court said the states do have the authority to determine whether they want to offer this to the citizens of their stay. they do have this right. there's a lot of reasons for that. there is a great deal of other precedent which i go into an a in detail in the legal the book that tells you we are in a sound legal footing here. this is a fundamental liberty

ride had won the american people have a right to. the state guarantees are passing and we are really just vindicating what most americans probably already assumed they have the right to. it is quite fundamental to be able to try to fight to save your life and we are basically codified in pain that frankly as american should already be a process on the law of the land but unfortunately the way regulations have worked out over the years, that right has been eroded. >> host: most states have been very supportive of these laws. you talk about the challenges and how you have legal standing. are you concerned there might be challenges to write to try laws? >> guest: it is anyone's guess if the federal government -- it

would be the department of justice would have to come after a doctor or patient. it would be quite a bold move for the department of justice to walk up to a cancer patient and say i know this is probably saving your life, but we are going to take this treatment away from you today and try to prosecute you. i don't know if there is a political willpower for them to try to do something like that. this is something that is overwhelmingly supported by the american people. it is overly well mainly supported by doctors and physicians in the establishment. but that hussein would talk about specialist emerging 80% or more say as long as a patient is informed about the risk that a doctor and a physician should be able to treat them with available care. in fact, they feel that is that

both they've taken. to have their hands tied when they know the best of best available treatment for one particular illness which i talk about in the book, it is heartbreaking and they feel it is unethical. it is possible the fda will try to come after these folks, but we are prepared to defend the patients in the top tiers with a very strong corporate could and would be proud to stand up for them in court. >> host: the right to try laws protect patients and pharmaceutical companies from prosecution. if someone were to try to access these drugs without going through clinical trials, without going through compassionate use and they lived in a state that did not pass right to try laws, what charges are they looking at? what penalties should they be concerned about? >> guest: you know, if you are trying to do this in an area

where the law doesn't protect you, i'm not exactly sure what would happen and i wouldn't encourage people to break the law. we are going to move this in as quickly as we can and in the meantime hopefully there's a neighboring state where you could get treatment. but again, i will say this. when your life is hanging in the balance, that is your decision and i wouldn't be above civil disobedience and i think very few of us would blame anyone who tried that. >> host: going into a neighboring state and bringing it back to one that does that would be okay to do, is that legal? >> guest: you could bring your treatment -- say if your treatment was in pill form or something like that, i believe you could bring it back to your

state. but depending on what is happening with you, you may need your physician there for the treatment. there's so many conditions that are so individual to the patients and the treatments that are hard to give a blanket answer. if somebody has a particular question, we would try to answer as best we could at the institute. >> host: some states still have to pass right to try laws. where are you headed next year? >> guest: we are hoping all of us will get going. pennsylvania and ohio are considering it. we think there would be some movement in vermont. so it is just everywhere. it is passed in virginia, florida, large state, small states. the first day with colorado. it was passed in texas which is a conservative state. again, this is something with

near unanimous support and it isn't the right to try laws are perfect or that they will solve every problem never existed, but it is such a tremendous improvement over what we have now, which is basically a closed-door if you have a terminal illness and have exhausted conventional treatments. there are a lot of drugs in the 15 year development window the prologue and save lives that this is such an incredible improvement over where we are today that there is just incredible support for it. i would draw people to the chapters in the book where i talk about -- you know, we keep using investigational and it's her mental and while they may be experimental in the u.s., there are dozens and maybe hundreds of drugs that have been approved in the european union, and israel, in japan, and other countries were the standard operating

procedures for better sometimes than some of the things we use like e-mail. we also call on congress to end the fda to allow for reciprocity for heavens sake of something is approved approved overseas through legitimate agency, regulatory agency which the countries i mentioned a lot of patients have access to the medicine. >> host: i am looking forward to following the report and i hope i am able to see different ways that patients have been able to access drugs because of these right to try laws. thank you so much for joining us today on c-span. >> guest: thank you, kimberly. a pleasure.

>> although it was a cold war in the sense that the threat of military conflict throughout its existence, it was the non-war, the single non-war, the third

world war which could have obliterated the human and animal life on the entire planet. >> now we are alive with author david merrin s. talking about his many books. you can participate by calling or texting in during the program or by sending in questions via e-mail, twitter or facebook. >> host: david maraniss, what inspired you to write about detroit in 1963. >> guest: it was the inspiration for any of my books. in 2011 is in new y