Continues. Host each week, we look at the money and n of your federal policy and this week were joined by David Mitchell, founder of d patients for Affordable Drugs. Prescription drug prices. What is chell, first, your group . Guest what is your group . Guest patients for Affordable Drugs, we are the only National Patient organization focused exclusively on lower drug prices. Take monfreany organization, profit from development or distribution of Prescription Drugs. Speak for patients, 50, last, always. Ost you are a patient yourself . Guest yeah. About seven years ago, i was incurable ith an multiple er policies to called myelomatis incurable, but it is expensive with very drugs. Retail price 450,000, so this of having a cancer to deal ough, having with expensive drugs brought me challengese with the people confront and nobody was really speaking up on behalf of the patients on drug pricing. Wife, who is a little crazy, too, and also a cancer urvivor, she and i decided we would try to start a group to do this. Host how many patients are a your group and how long have you been around . Guest we launched almost a year last year. Ry 22nd of time e collected in that 12,000 patient stories and 30,000 addresss from people around the country. Host it is an advocacy what is the tax filing, what are you legally allowed to do . 501c3. We are 501c4, political patients rm, called for Affordable Drugs now. What were doing really is stories and t amplifying those to policymakers, elected officials mobilizing patients in our community to speak up for olicies that will lower drug prices. So last week, one of our the nts testified before oregon legislature. On march 1, ill be in colorado o join patients testifying before the colorado legislature. Two weeks ago we had patient washington, around a bill called the creates act, a certain path by Drug Companies. Brought in from i went to a meeting with paul trapp, office and jackie a retired teacher from his district, who pays more than 18,000 a year out of pocket for her trugs. Patients mobilizing online and beginning to mobilize atients directly to be advocates for themselves. C3 and u mention the advocacy arm. How does your group raise money . Guest we get money from foundations. Order to help leverage that money, my wife and i decided hat we would start the group with our own money, frankly we put in 75,tment to three years. R for i work for free. I retired to do this, went to potential funders and said if i work for free and i put in my own money, would you help us . Yes. Foundations said weve raised three years. I work for free. I retired to do this, went monf online who eople come to patientsforaffordabledrugs. Org, few bucks. Iven us a we dont ask for money from to ents, but if they want help, we can use the help. Host David Mitchell, founder of patients for Affordable Drugs. Weeks money segment. Here is what the president had union in his state of the address about Prescription Drug prices. Pres. Trump one of my greatest to reduce the price of Prescription Drugs. [applause] in many other countries, these drugs cost far what we pay in the united states. Unfair. Very, very that is why ive directed my dministration to make fixing the injustice of high drug priorities f my top for the year. [applause] pres. Trump and prices will substantially. Host the president from his state of the union address. Releases his budget plan, hat do we know how how he will put that into action and bring the prices down . Guest first of all, the prices in s right, this country are way too high. Three time what is people pay in other twped countries. Reason is there are governmentgranted monopolys given to pharmaceutical allowed and they are to charge whatever they want. We think the president was right a year ago when he said drug getting away with murder. The ately, in prot po propos far. Osals weve seen so a report released last week pharma from cludes any action, the big drug action to rshgs any lower drug prices. The document says, well change design, which could be good, were going to change design of benefits under medicaid, which also could be good, but the head waters, the root of the problem prices set by the Drug Companies and there is nothing proposals te house weve seen so far that would address that. Now the budget documents are and well see more detail. We are very interested to see hether theyre going to actually do something that would go after the root cause of the companies. E dug host what is the best way to go at the root cause of the problem . Two ways. One is as the president that the last year, federal government should negotiate directly with the drug lower drug prices. Every other country in the world ones hat, were the only that doesnt. We pay more. The other will be to tackle the patent abuse. The Drug Companies get a period a exclusivity when they bring drug to market, it allows them to make a lot of money, governmentgranted monopoly. T the end, were supposed to allow generics to come to market with free market competition. Drug Companies Gain the system and do things called pay for delay. They dont give samples of their product to generic manufacturers samples to develop a generic equivalent. Is aed patent reform there bill in congress the president could support, the creates act, taxpayers 3. 3 billion and speed cheaper could s to market and he stand up for that right now. It is bipartisan in both houses week. Could do it this host talk more about the creates act. Irst part of what you were talking about the bloomberg reports about what is be prog from h. H. S. And what well see in documents, proposals include something President Trump threatend and companys drug biggest fear, negotiating directly, that is what you think would help most. That is patent reform immediately would do the most to this own drug prices in country. Host go ahead. Join o invite viewers to the conversation, we split phone lines up regionally, if you live eastern or central time one, the phone number is 2027488000. If you live in mountain or 2027488001. , we want to hear your stories and uestions for David Mitchell with patients for Affordable Drugs. Patients for Affordable Drugs out on to check them the internet. Guest i want to add one thing, if i can. Please. Guest there are problems all down the Drug Distribution chain report that a fine was issued last november by the sciences, ademies of chairedt people, it was by norm au norm our disdain, a formergu ceo of Lockheed Martin and two cheap recommendations to lower drug prices in this country were medicare should be able to negotiate directly for drug prices and we need patent reform. Those two things completely missing from the white house proposals. Host barry in island heights, new jersey. Good morning. Caller good morning. I wanted to bring attention to the unanimous approval of the 2012 f. D. A. Safety and innovation act giving f. D. A. The right to charge fees for generic drug manufacturers. These fees are unfair because if you make generic drugs this 1000 year you pay 248,000. If you make one generic drug, your fee is 248,000. 65 generic drug manufacturers have gone out of business because of the Fee Structure. Guest i am not intimately familiar with the generic Fee Structure for f. D. A. User fees. I can say this, the way we express competition to drive down prices under the Legal Framework we have in this country is that we allow generics to come to market after the brand has a time of exclusivity. The first generic generally reduces the price to 80 of the original brand price and by the time we get four or five, the present and come down to 20 or or 15 . We need a healthy generic industry in order to be able to effectuate the policy we have, brands get a big return for innovation and research for that period of time than generics drive down prices. Ill look into the issue you raise and familiarize myself with it. Thank you. Host dean has a question, why cant we model after v. A. System . I used that the ache pharmacy the v. A. Pharmacy low cost and order online and they ship to my house. Guest interestingly, thank you for that, Veterans Administration is the only Government Entity, federal Government Entity that is allowed to bargain over drug prices and they get substantially lower drug prices, that is why we think the experience of v. A. Is something we could build on and allow medicare to use that same negotiating approach on behalf of all of us so that we can get better prices, like those in other countries. Host to tammy in vienna, virginia. Good morning. Caller hi. My understanding is that many new drugs and medical protocols actually have their root in federal funding. Federal agencies might support their research and Development Efforts when theyre new. It stands to reason that these same companies would be required to sort of be more agreeable to negotiating prices down the road, especially since they have benefited from federally funded research. What is your comment on that . Guest i couldnt agree more, tammy, thank you. The fact is roughly 50 to 60 of roughly 50 to 60 of all the major new breakthrough drugs that come to market in this country, come about as a result of investment, taxpayer investment by the National Institutes of health, directly from the n. I. H. Or through academic medical centers. A drug just came to market, a wonderful drug that i probably will get, its called, it is a cartt drug, first approval and i can explain that if you want host please. Guest genetically reprograms your blood to go after the cancer. Cart stands for receptor and reprograms your tcells to find cancer and kill it. The n. I. H. Invested more than 200 million from 1993 to 2017 to bring this drug to market. The head of the n. I. H. Says cartt drugs are grounded on initial basic science conducted by the n. I. H. But when novartis brought the first version to market it put a price on of 475,000, just for the drug. Then the cost of care associated with administering the drug is another halfMillion Dollars and i am not exaggerating. It is a Million Dollar treatment. We cant keep pricing drugs this way, that we all pay to develop. We have to have a discussion about how we price drugs to maximize accessibility and affordability while maintaining a rich rnd pipeline and reasonable profit for the company. Host circle back to the creates act, this from axios reporting the pharmaceutical industry was able to keep the create tax out of the budget agreement that came out last week. The gist of the create tax make it easier for companies to obtain samples of brandname products they are trying to copy, an integral step of copying them. Senior republican aide says the problem with the create tax, it would be giving away the store to trial lawyers and allow generics to sue for access to product samples. I want to get to respond to that. Guest that senior staffer is confused. Trial lawyers cant sue under the creates act to get the samples. Only bona fide Generic Companies who have fda to request with the manufacture the drug and whose safety protocols have been cleared can request the drug, so theyre the only ones who could sue. In other words, a company that cant get the drugs could sue, not trial lawyers. And affirmative defense on behalf of the Brand Company that refuses to provide samples is to simply provide the samples and then the whole thing goes away. So that is specious and wrong and this is just further scare tactics on the part of pharmaceutical industry, which is not being truthful about this bill and the woman i described to you from congressman ryans district who came from wisconsin to meet with his staff, jackie trapp, shes on a rems drug. The reason the drug is expensive, 18,000 out of pocket for jackie, a retired school teacher, is because of this abuse by the company who makes that drug. It refused to provide samples to companies that want to make a cheaper generic. It entered an agreement with a Generic Company that doesnt allow generic to come to market until 2022, five years more of exclusivity. Its called pay for delay. Host who should viewers watch in congress when it comes to the creates act and where it goes from here . Guest thats a darn good question. The lead sponsor is senator leahy, but it has support, strong bipartisan support iowa, lee ofley of utah, collins of may, ted cruz, rand paul, senator kennedy of louisiana, signed on last week, those are all republicans. And then it has really strong support from the democratic side. I would say, watch the House Judiciary Committee and watch the budget the negotiations that are coming up on the funding bill that is due to be acted on in march because we intend to make another big push to get that included into the funding bill. We still have momentum, we were adding cosponsors last week. Host to you think if it gets to the president s desk, he will sign it . Guest i cant speak for the president , but it is consistent with what he says he wants. So i would say, yes. Host linda in jacksonville, florida, good morning. Caller good morning. My comment is on the price of Prescription Drugs. My husband and i live on Social Security and his retirement. And it is just about almost poverty level. The medication that i take are majority of them are the tier3 drugs that have no generics and i just, you know, this one medication is without my insurance, almost more than half of what i receive in Social Security. My problem is that were going to be in the donut hole in about four or five months and we are going to be having to choose between medicine and food and builds, and we dont qualify for food stamps or medicare extra help and we dont qualify for anything else. Host thanks for sharing your story. David mitchell. Guest this is the kind of story that is the reason were doing this. It makes me so mad. Shes just expressing what millions of people are experiencing around the country. The out of pocket for the 12 most expensive drugs for people who have Medicare Partd coverage like she has, runs from 4400 to about 12,000 a year. Median. Not highest, but the median cost for those 12 drugs. This is for people who are making a Median Income of about 26,000 a year. Its just wrong. And medicare should be negotiating over the price of these drugs. There are proposals to cap out of pocket under Medicare Part d. We have to see what those look like because there is a way you can cap the prices and it is like a balloon, squish it here and it comes out there. And if it is going to raise prices for people sorry, if it is going to raise premiums for people dramatically, it may not be the best solution, put that would be a help. That could be in the budget today, well take a look and see. But again, the root cause of the problem is that were not negotiating over the price of these drugs with the Drug Companies. Host David Mitchell is with patients for Affordable Drugs, youve heard storys from viewers today on this topic. Patience for Affordable Drugs have a map of the various patients that you work with across the country and their stories. I imagine you can click on the dots individually to hear and see the stories from the patients that work with them. Patientsforaffordabledrugs. Org, if you want to check it out online. David mitchell with us until 9 40 this morning. Taylor in iowa, good morning. Caller yeah, want to talk about Affordable Drugs. You know, i just know i see a lot of people around here, especially this area, where they cant quite afford what they need and one thing that ive notice the cannibis industry will take down the pharmaceutical industry, i hope that happens, we dont want people to get their pockets full. Im seeing this video the other day on facebook. That is all. Thank you. Host mr. Mitchell. Guest im not sure what that comment was and im not familiar with the cannibis industry. I have to say i wish you well. Host lynette, in clear lake, california, good morning. Caller good morning. I think the biggest problem that we have with our Prescription Drugs is that the senators and our congressmen are selling their votes to big pharma. And they have to vote for that. They dont represent us, they take the money and go big pharmas way. Its so irritating. I live on 12,000 a year, i got built from my superscript medicare drug plan. They want 57 from me. That is taking food out of my mouth. Host mr. Mitchell. Guest that comment, thank you for that, is really emblem attic really emblematic of what we hear from many. Patients tell us all the time, i have to choose between buying food, i choose between paying rent and buying drugs i need. Patients who cut pills in half or skip doses. People who are type 1 diabetes, have to have insulin to manage their disease, who try not to use it until their blood sugar spikes, which is really dangerous for a diabetic. It can put them into insulin shock, because they cant afford the drugs they need. We had a patient who told us two weeks ago that he has cancer and he has multiple sclerosis. He cant afford both drugs, he lets multiple sclerosis progress because he has to treat his cancer or die. This is happening all over america right now and absolutely right, the pharmaceutical industry is one of, if not the most powerful industry in this country. They spe