tv Washington This Week CSPAN January 19, 2015 5:38am-6:01am EST
immoral or legal but disdainful behavior and i don't think that's the intent of the law. >> i will try as hard as i can and keep at it which is immoral and disdainful -- i just reject associating that with my remarks and my boss's remarks. in the case of continuing medical education, it is an ongoing conversation. it's something we is warranting further conversation that we are not leading the charge let's go there right now particularly because of the complexity. we talk about journal articles and that's one where the ability of a manufacture provides
journal articles to providers out there and whether or not that should be reported. it's one that you and i spent time on and that's a challenging one absolutely but ultimately i am comfortable with sitting down with my provider and asking about a payment showing up in the database and having her tell me that this is related to learning more about this condition, which you don't have but another patient may have and that is why that was there. there are choices. it's to not take it, to take it and report it, or to purchase it on your own. those are legitimate choices and providers have the opportunity to make those and then the reports go to the database and the patients can ask. we continue to believe that's totally legitimate and legal and attaching -- we are not rushing to attach judgment here and i hope i can continue to make that case successfully here. >> can you wait for the mic
please? >> the idea that a physician should never talk to a pharmaceutical rep or a device rep is like saying please go find a cell phone but you cannot talk to a vodafone. you can't talk to verizon. you can't talk to at&t and i still believe that this country, those behaviors are not legal. -- not illegal. >> i get the point and i realize i'm sitting next to judgment here and i will give her the opportunity to make her case but we are not there. we don't necessarily agree with something. i cannot wait to go to my wife on our upcoming anniversary and tell her that i heard that gifts -- little gifts were more meaningful so i'm just saying. [laughter] i am just saying that this snickers bar versus dinner in a
nice restaurant, i am just saying i heard this was the case. >> you said she is watching. [laughter] >> i'm just saying -- so again i want to make sure there's a distinction between the remarks i'm making and where we stand with legislation and some other things you are hearing from my colleague. >> and to rodney's wife who is watching she can ask for a large gifts. >> frequency is important, more flowers, more candy. probably people in the audience don't know that when they undergo surgery there is often a device rep in the operating room assisting the surgeon, although they are not allowed to touch the patient. if you are afraid about relationships between drug reps and physicians, you should be way more afraid of the relationship between medical device reps and physicians.
this contributes to using untested devices and people may or may not know that medical devices don't have to have been inserted in a human being or tested in human beings before being put on the market. we have had many disasters with orthopedic surgery and many other medical devices where we have learned about the dangers after they have been in use. this is a complicated discussion that we don't have time to get into but there's a lot of ethical and a lot of not just ethical discussions but real patient harm that results from the relationships between medical device reps and surgeons. >> in the back. >> good morning. thank you very much to the panel
and thank you to the national panel on coalition for putting this discussion together. it's interesting from my perspective sitting here i'm representing rare diseases today. my name is marion o'dea and i represent individuals who have alpha-1 trips deficiency. alpha-1 is a genetic lung disease that individuals develop even if they have not smoked and for people with rare disorders i will tell you that we used to quote that it took seven years to diagnose this, but in october of 2013, the national organization for rare disorders did an on line survey and they are now saying it takes at least 10 years or more. 20% said it takes 10 years or more. one of the ways physicians learn about this disease and learn about the treatment is by cme and also through dealing with drug are presented as and hearing about -- meeting patients who have this disease to often go in with the drug reps to talk about their disorder and how they were diagnosed.
so i wonder if you could make some comments. many of the things that have been said make a lot of since when we talk about common disorders but not necessarily rare diseases. and i have a few other questions. i wanted to ask you if you could design invented diseases and whether or not you think that's by guidelines being revised because of pharmaceutical companies or whether that refers to drug licensure parameters and then how should patients be educated to understand transparency? and what should the transparency be for voluntary health agencies that serve patient interest? >> a lot of questions there. adriane, i'm going to let you start particularly because she did mention issues of invented disease and the question was what about the people that have a rare disease that many people haven't heard of.
is this transmission of information helpful to the agency? >> consumers are important in this conversation and consumer advocacy organizations for rare diseases and other diseases are important, but it compromises what they have to say when they are taking money from pharmaceutical companies. there are organizations like the national women's health network and the national breast cancer action rather and health research group. there are consumer advocacy organizations that do not take money from pharmaceutical companies, but are still very active at getting health issues and topics that don't receive enough coverage covered. even if you are a small organization you can still get attention and get the word out without pharmaceutical money. in terms of invented diseases this has also been called disease mongering by lynne payer
or selling sickness. and i use it to refer to conditions or as industry calls them disease states that have literally been created by industry and put forth through third parties because they will hire and convince leaders and advocacy organizations etc. to make particular conditions accepted so social anxiety disorder and some of the others we talked about before. these are actually invented out of whole cloth. i don't remember what the other questions were. >> we have met on numerous occasions and i get your point and particularly for coming back to where we have been again and again which is a provider who wants to become more educated says okay and no provider should be uncomfortable talking about it.
i don't remember if this was you who gave this is a case or you brought someone from iowa who talked about this. and i was sometimes we'll have physicians rotating between different hospitals so they will walk into different surgeries and we discussed in one hospital they have a certain type of device for a hip replacement or knee replacement. so being able to come in and consult the manual instructions related to that is important to have on-site and if it has gone missing or is not their being able to get one immediately. if that is counted as part of that. if i come to you and say there was this report on open payments that talked about this but at this amount and you can tell me, oh yeah that was to get the instructions on hand for the purposes of your knee replacement -- i am good with that. that's a good thing. i want to keep posing that there
are potential positives here. we are not an absolutist position here. the opportunity to gain education is something that's available and no one should be afraid of it. no one should be afraid of explaining it to their patients. if you're uncomfortable with that, then that's your concern. if you aren't comfortable as a provider having a conversation that should be concerned but so much about we talk about and marion where you went i would be incredibly happy to have my provider be able to tell that it's related to me. this is where i got it and there is this rare disease and i have this because i was talking to someone. i consider that valuable. >> allan d. want to comment? >> just a couple of thoughts. one is that it's taking 10 years to diagnose your rare condition then the system isn't working.
that's the first thing to say, i think of a syndrome or something that doesn't have a drug treatment. so we have got to have a system where diagnosticians are learning about rare conditions and are not dependent on the makers of products to teach them how to diagnose. and nobody here is saying alpha-1 trypsin is not a real condition. it is a very real and serious condition and has to be appropriately diagnosed and treated. >> i think it's very challenging to get everybody on board with information. it's a huge operation to obtain medical education and in
general. you could say that's a failure of the profession to reach out to advocacy organizations to learn about these health issues like alpha-1 antitrypsin deficiency and to really educate providers about this. i would not necessarily say that becomes a justification for getting funding from medication manufacturers or device manufacturers. i think that we want to know about these things but we also want to empower patients to ask simple questions that can be very powerful. the same way i said are there other treatment options? every patient should be empowered to ask your provider -- are there other diagnoses we should be thinking about? i have been suffering with these symptoms for a long time. i don't feel like i have a good handle on what's going on.
are there other things we should be considering? i think having an activated patient is often the key to solving these issues and can be applicable across a lot of rare diseases, not necessarily one specific one. >> i would like to use the last couple of minutes for a lightning round. obviously, this is the law of the land. we have heard a lot of areas in which it can be expanded from the panel and needs to be improved from the utterance. -- from the audience. what are one or two things you would like to see either with the physician sunshine after other ways of improving disclosure that you think will be next steps going forward? rodney we'll start with you. >> it is cms' ongoing work improvement of the web site. we look at it in the next two or three years for that to become accepted, respected, expected and that it works.
that to us is what is most important right now. outside of that, we can talk about other issues but that is where i think we are right now working on being established. >> let's have required disclosure for all organizations -- national, regional, and local, whether medical advocacy or anything related with health. >> i mentioned a few this morning that are within the scope of the current law and beyond the scope of the current law. would be lovely to have other health care providers governing. -- providers covered. >> i definitely agree with making a web site function as well as possible so we can easily see outliers in the profession. so that can be used to drive culture change. >> join me in thanking this panel and the national coalition on health care and john for hosting this event. [applause] [captioning performed by national captioning institute]
[captions copyright national cable satellite corp. 2015] >> coming up next, q&a. live at 7:00 a.m. eastern, "washington journal." tonight on c-span, students, activists, and law enforcement officials discuss racism in america. this event took place in cleveland. the panel also discusses a justice department report which accuses the cleveland police of using unnecessary force. here is a portion.
>> i don't think that black people or brown people have the power to be racist, in a sense. if you slap me and i am upset that you slap me and i slap you back -- i'm not encouraging anybody to slap anybody, but i am reacting to what i have you done with me -- that is what is going on here. we don't have the power. you are talking about institutionalized racism, the power to create and enact laws. the power to stop a person from doing something or allow them to do something. there is discrimination across the globe. look at what is happening in nigeria. look at what is happening in places in europe and parts of asia. there are all types of people.
what we see across the globe is that there is hatred that exists and hatred for other people. it is not just in america. it did not just start. we talked about racism just kind of starting in the civil rights. it started with native americans. we can't forget about all of the people who have been impacted by the idea that i am better than you. that is what a boils down to. i am better than you and you do not deserve to be in the same place. it happens with men and women religion, all types of cultures. you can go to places of africa and pakistan and others. my tribe is better than your tribe. we need to look at a from a global server -- perspective and we will be successful. >> that is tonight at 8:00 eastern on c-span.
>> tonight on "the communicators." we look at the newest developments in the technology industry for 2015. we met up with our guests at the consumer electronics show in las vegas. >> solving problems of the world. not to sound too grandiose. transportation problems. driverless cars. food production, hunger. there are a lot of ways of helping costs. you don't even have to be there. health care. my gosh, there are more solutions for health care. getting information to your doctor, analyzing information.
safety. in the home, safety of everything. exploring things. you are taking a lot of problems and we are going to be reducing them in the future. >> it is a great opportunity for us to highlight our innovation as a company. the next generation connectivity system. we are talking about vehicles we have on the road today. we talking about a fully autonomous vehicle that we are developing for the future. as a company, innovation 4s is really important and this is a show that encompasses that -- for us is really important and that is a show that encompasses that. >> the show is an opportunity to learn different innovations happening in the marketplace and how that impacts my job at the fcc. what is it going to do for a new television standard?
when i look at satellite products, what is the impact on so many different items we have or items that may come before? these things might involve us in the future. >> tonight at 8:00 eastern on "the communicators" on c-span 2. . ♪ >> this week, our guest is dr. anthony felt -- dr. anthony fauci, director
of the national institute of allergy and infectious diseases. he addresses the challenges involved in running a institute, and how his staff work on new disease outbreaks. he also talks about his upbringing, family, how he got into medicine, and his relationship with different presidents at the time. >> dr. anthony fauci, director of the national institute of allergy and infectious diseases, how many years? >> 30, 30 years. >> in those 30 years, did you ever have a feeling that something was going to get away from us in one of these crises or diseases? >> not that it was going to get away from us, but it was going to be a lot more serious than anyone anticipated. when i first started seeing and taking care of hiv infected individuals, before we even knew that it was hiv, in early 1981 the winter of 1881 and 1982 -- it was very unpredictable and no one knew what was happening. i was concerned that many people in and out of government
considered this just a fluke of --among gay men but the way i saw it evolve and following it it was quite scary. unfortunately my concerns were well-founded, because it turned to historically and be today one of the most devastating historic pandemics that we have ever experienced, that civilization has ever experienced. >> when did you first recognize this? was there an ah-ha moment? >> there was an ah-ha moment, he -- it was the summer, and the cdc puts out a weekly mortality report, which is almost a pamphlet that gives you a heads up on diseases, or an outbreak