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Dr. Kathleen Sibelius on NPR tomorrow.....................

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by Hope123, Aug 2, 2010.

  1. Hope123

    Hope123 Senior Member

    Dr. Sibelius is the head of DHHS, which oversees NIH/ FDA/ and CDC. She will be on (US) National Public Radio's Talk of the Nation tomorrow to talk primarily about her new plan to combat HIV/ AIDS but if people are interested, one thought would be to e-mail or call-in during the show to ask her about CFS and XMRV and what DHHS is doing about it. Another possibility is to write them today with questions. The problem is that their focus is not on CFS so I don't know how responsive they will be.

    Talk of the Nation is broadcasted nationally East Coast time 2PM-4PM (change your time as necessary for different time zones). NPR affiliates are the most widely listened to radio stations in the US. The segment with Sibelius likely will last 30mins-1hr and will also be archived.

    Here's contact info:
    E-mail: talk@npr.org


  2. V99


    Even if they don't ask her, they may invite her back to answer those questions, so it is definitely worth a shot. Good idea Hope
  3. jspotila

    jspotila Senior Member

    Great catch, Hope. Thanks!
  4. judderwocky

    judderwocky Senior Member

    I emailed them as well i think this is a great idea...

    I am asking the NPR Staff and Producers to press Dr. Kathleen Sibelius
    on issues related to the XMRV Virus and related health threats. Similar
    to HIV, XMRV is also a retrovirus and is present in the human
    population. Studies have linked XMRV to both Chronic Fatigue Syndrome
    and to aggressive forms of Prostate Cancer. The DHHS has placed key
    research concerning this virus on hold, a move criticized by scientists
    within the field. A recent article in Aids Review, has suggested that
    nearly 17 million people worldwide could be infected with this virus -
    making it possibly the most prevalent retrovirus in humans. Please ask
    Dr. Sibelius to clarify the government's position on this virus. To
    date, and to my knowledge, they have not addressed this or other patient
    concerns publicly.

    i don't know if anybody has been watching change.org recently but they recently got NPR one of the vacated press spots...
  5. Hope123

    Hope123 Senior Member

    I'm wrong about the 'Dr.' Someone pointed out to me she isn't, MD or PhD!

    Anyhow, I listen to Talk on and off over the years, and there have been a couple times when people phoned in about CFS when other topics were covered.....e.g. disability issues.
  6. justinreilly

    justinreilly Senior Member

    NYC (& RI)
    Thanks for the catch and the links.

    I wrote the following to the show. I think stressing 'why aren't they telling the public about these new retroviruses in the blood supply? this is another And the Band Played On' is an angle they may pick up on.

  7. xrayspex

    xrayspex Senior Member

    good idea, lets get on it quick
  8. xrayspex

    xrayspex Senior Member

  9. Rrrr

    Rrrr Senior Member

    i'll email NPR right now. thanks for this!! let's try to call in tomorrow, too! you need to call in at the start of the show.
  10. xrayspex

    xrayspex Senior Member

    does someone have the link to alter's presentation in croatia? I like that one too, not sure where I put it...
  11. CBS

    CBS Senior Member

  12. Ash

    Ash aka @smashman42 'SortaDerpy' on Twitter

    Haha, love the last slide of Dodd's, Crockoduck!
  13. Gemini

    Gemini Senior Member

    East Coast USA

    Great idea! Thanks for posting it!

    Questions I submitted for Secretary Sebelius:

    "Government spends over $19 billion annually on domestic HIV/AIDS programs. How much is HHS spending on the infectious retrovirus, XMRV, estimated to infect millions and present in the blood supply? Have you met with the founders of the Whittemore Peterson Institute to acknowledge their discovery of XMRV in ME/CFS and to ask how HHS can help them continue their groundbreaking work?"

  14. xrayspex

    xrayspex Senior Member

    great questions gemini!

    and thanks for info cbs
  15. jane doe

    jane doe

    could someone throw up the station number? I am having intellect challenge finding it on a schedule at npr site, is it in a particular state or the larger station, I want to know what channel to put radio on or pandora?
  16. dschlindwein

    dschlindwein not according to plan

    Athens, GA
    The phone number to the show is 800-989-8255 begin_of_the_skype_highlighting**************800-989-8255******end_of_the_skype_highlighting. I don't know Kathleen Sibelius will be on the first hour (2 pm Eastern time) or the second (3 pm Eastern). Here is a link to a page titled "How to be a caller on Talk of the Nation":


    I have Sirius satellite radio in my room, because that's where I live, so I can listen to the show on satellite radio. I don't know what cities get it on FM, but I think plenty do.
  17. xrayspex

    xrayspex Senior Member

    thanks it was on the local one, am working so couldnt listen closely but didnt hear it get addressed at all

    the bummer is this new health care reform seems to trump all topics today on people's minds
    If they have her back on I suggest if you call in to b.s. what you want to ask her about to get thru and then do the switcheroo to xmrv when yer live....
  18. *GG*

    *GG* senior member

    Concord, NH
    I saw that you wrote Dr. and that caught my attention, yeah she is definetly not a Dr. just a politician, talking head. I have no hope that she will do what is right. But I hope I am proven wrong! She is part of the corrupt leadership in this country!!

    The only reason they will help us is if this helps them in some way, they are not looking out for the "little" people like they like to say they are.
  19. Rrrr

    Rrrr Senior Member

    Transcript of the interview (short story: XMRV/CFS not mentioned)


    < HHS Chief Takes On Health Care Challenges

    Copyright 2010 National Public Radio. For personal, noncommercial use only. See Terms of Use. For other uses, prior permission required.
    text size A A A

    Heard on Talk of the Nation

    August 3, 2010 - TONY COX, host:

    This is TALK OF THE NATION. Im Tony Cox. Neal Conan is away.

    Health and Human Services Secretary Kathleen Sebelius has several hurdles ahead of her, none bigger than implementing the huge and still controversial health care overhaul signed into law by President Obama in March.

    In addition to shepherding the president's new HIV/AIDS strategy, ironing out the final details and promoting the Affordable Care Act, and tackling health care issues for schoolchildren, she is battling on several fronts over the health care plan.

    Missouri votes on a measure today that would stop key parts of the law. A Virginia judge yesterday allowed a lawsuit to go forward challenging the Obama health care plan, and 20 other states are working to stop the law in various courts.

    In a moment, Secretary Sebelius joins us to take your calls. Later in the show, we check in on the Gulf Coast, where hopes are higher now that the leak seems to be a thing of the past, but what about the seafood? Is it safe to eat yet? We'll find out.

    But right now Secretary of Health and Human Services Kathleen Sebelius. If you have questions for her, our number here in Washington is 800-989-8255. Our email address, talk@npr.org. And you can join the conversation at our website. Just go to npr.org and click on TALK OF THE NATION.

    Secretary Sebelius joins us now here in Studio 3A. Welcome, Secretary.

    Secretary KATHLEEN SEBELIUS (Department of Health and Human Services): Thank you, Tony, great to be with you.

    COX: It is nice to have you. Before we get into the calls and some of the questions, let me ask you to start us off with this. What do you think the American public, the people, are most interested and most concerned about with respect to their health care and particularly this health care reform package?

    Sec. SEBELIUS: Well, I think most people start with how is this going to impact me and my family. There's nothing more personal to folks than health care: taking care of their kids, taking care of their parents, taking care of themselves.

    So people with insurance want to know: Will I keep the plan I have? Do I get to keep my doctor? Is there going to be some change, if I like what's going on, that I dont like? Folks who dont have coverage at all want to know how soon they may have access. Is there going to be an affordable choice? And seniors want to know how it affects Medicare.

    So people really start a conversation about health care from the point of view of how does the bill that Congress passed, that was debated for well over a year, that the president talked about for two years on the campaign trail, how does this actually work, and what's going to happen to me?

    COX: We're going to spend a great deal of this time that you are with us talking about that, I'm certain, and I know that the phone calls are going to be coming in very quickly, and people are going to have more questions about that.

    So let's talk about something before we get to that. One of the things that you are dealing with, the latest news coming out of the administration is this new HIV/AIDS strategy, which has been touted and criticized, which I suppose is the way things work here inside Washington. Tell us about that strategy.

    Sec. SEBELIUS: Well, what has happened, Tony, is a group has come together having lots of conversations across the country with providers, with AIDS patients, with families, with community leaders, to talk about how we can really again focus attention in this country on what is a very serious epidemic, in spite of the fact that we now have very effective antiviral drugs.

    That may be a good news/bad news. The good news is people are now not sentenced to death when they get diagnosed with AIDS. The bad news is, it has I think made a lot of folks more complacent. Testing levels have not gone up. We are still seeing about 10,000 new cases a year. We've sort of flattened out in terms of our aggressive tactics.

    So we want to focus the resources, focus the energy, focus the strategy on both what we know works and get people's attention again to get tested, knowing that this is a very serious disease.

    COX: This is TALK OF THE NATION. I'm Tony Cox, sitting in for Neal Conan, who is away. We are talking with Health and Human Services Secretary Kathleen Sebelius, and if you'd like to join the conversation and ask her a question, you can call at 1-800-989-8255. The email address is talk@npr.org.

    We have a phone call, so why don't we go to this to get us going? This call is from Beth(ph), I believe. Beth joins us from well, I'm not sure how to pronounce that city in New York, Beth. How do you pronounce that city?

    BETH (Caller): It's Schenectady. Thats okay.

    COX: Okay, Schenectady. Oh, somebody wrote it phonetically for me. That's really cute.

    BETH: Yeah, where radio started.

    COX: I got you. You're on the air with TALK OF THE NATION and Secretary Sebelius.

    Sec. SEBELIUS: Hi, Beth.

    BETH: Hi. I'm going to try to make this very succinct. I'm one of those people without health insurance.

    Sec. SEBELIUS: Yup.

    BETH: But I also live with relatives, drive a 20-year-old car and, you know, have borderline malnutrition. So when you tell me that I have to go out, and I'm over the poverty line - so when you go out, when you tell me I have to go out and buy health insurance, that's literally food out of my mouth.

    And I was going to say, Suze Orman has covered a very similar topic. Someone called in. They wanted to do something like a placenta health or something for their children, and Suze looked in their it was a very serious issue, something extra, health care issue-wise. And she looked at their finances and she said, you know, you don't have enough money for living. You worry about that down the line, but you have to have enough money to survive on.

    And that is my concern with this law. Most of us, people who work in gas stations making eight, 10, 20 - up to $20 an hour, will be deciding between, which I'm already doing, and we already are, food, shelter or buying a health insurance plan which we will not be able to use.

    COX: Well, Beth, let me jump in to give the secretary an opportunity to respond to that. Thank you for the call, by the way.

    Sec. SEBELIUS: Well, Beth, I think, has raised an important point, and it really needs to have some understanding of the way the law is constructed. Tony, a lot of people, what we find, want health insurance right now but can't afford it, or folks like Beth who, you know, is barely getting by.

    So the new bill, starting in 2014, does have an individual responsibility clause. It applies to people who can afford it. So there is a hardship waiver that people will not have to purchase insurance if they cannot afford it.

    But even better news is that there is a subsidy for lower-income working folks, for lower-income Americans to be able to afford coverage. So they may in Beth's situation, if she's at about the poverty line, she'll be automatically eligible for Medicaid in any state; 133 percent of poverty and below is eligible for Medicaid. Or she's eligible for a new health insurance exchange, state-based exchange, with a heavy subsidy, depending on the income level, from the federal government.

    So for the first time ever in the history of this country, not only will the markets open up, not only will we have competitive choices, but you'll have some very serious assistance from the federal government with a hardship waiver if you still can't afford the coverage.

    COX: That mandated coverage is at the crux of the court case that was being filed that was filed in Virginia and is winding its way through the courts, I presume, in 20 other states. And it's also at the crux of an election just today in Missouri. Are you confident that it will be able to withstand constitutional muster?

    Sec. SEBELIUS: Well, I'm not a lawyer. Let's start there. But I do get briefed on a regular basis by the lawyers from the Justice Department and took a strong look at this as the bill was being negotiated in the House and the Senate. And I am confident that it stands on strong constitutional grounds.

    The grounds are based on the interstate commerce, on business moving back and forth, and the fact that the federal government has a right to essentially make the rules for interstate commerce.

    But what we know again, on a personal level - is that everybody who is purchasing insurance right now is paying additional for their insurance coverage for all the folks who don't have insurance, who come to the doors of an emergency room, who access a clinic, who end up it's approximately $1,000 a family added on to the cost of everyone's insurance to pick up those extra costs.

    And we also know that taxpayers pay a big share of that burden. So right now, people are paying the cost for folks who are just opting in and out of insurance when they get more seriously ill or picking up a hospital stay for somebody who could afford coverage but chooses not to get it.

    So there is an individual responsibility piece here, but also a notion that, you know, lots of folks are going to need some help paying for coverage, or we need to have a hardship waiver at the end of the day, and that's all part of the law.

    COX: One of the things that also is a part of this at the moment, we have an email that is part of a question, in fact, that I was going to ask you myself, because as a former governor of the state of Kansas, you are dealing with governors right now, helping them to try to implement this, trying to convince those who are not convinced yet that it's the right thing to do.

    And this question comes from Topeka, Kansas, from Bob. He says: How has your experience as governor of Kansas prepared you for your current job as secretary of HHS? And if Bob wouldn't mind, I would like to add this to his question: How would you deal with this if you were still in the governor's chair and you had to implement it?

    Sec. SEBELIUS: Well, Bob, I hope it's not as hot in Topeka today as it was heading this weekend when I was home. But being a governor is a great training ground for being a Cabinet secretary.

    I had a cabinet as a governor. I am now part of a cabinet with 11 agencies under the umbrella of our department, so a lot like the cabinet I used to have at home.

    I worked with a legislature. Now we work with Congress. I, you know, managed a budget, do the same kind of thing. So it's there are four former governors who are members of President Obama's Cabinet, and I think it's a great background and experience to have had to serve in this capacity and now turn around and work with my former colleagues as governors.

    This is a pretty state-friendly piece of federal legislation, where the assumptions at every point along the way is that the state's going to run the plan, unless they choose not to do that, and then we step in. But this is not the federal government taking over health care. This is a very state-driven health plan.

    COX: And you would feel that way even if you were the governor and it was being presented to you the way it's being presented to your former colleagues?

    Sec. SEBELIUS: Well, I'd start with that framework when I talk to my friends and colleagues. Because I was a governor, I think I was able to influence a lot of the legislative decisions so that insurance regulation I used to be one of those too - I was the state insurance commissioner in Kansas.

    So insurance regulation is still very much within the hands of the state. We know that that's the best place for it. We're giving resources, extra resources, to states. The exchanges, when they're up and running in 2014, this new marketplace where people will have some ability to find available coverage, and small business owners and individuals will have a pool that they've never had before, that's a state-run program.

    The new high-risk insurance plans are being run at the state level. So this really starts with the states in control of their own market, their own insurance ideas.

    COX: We'll continue that, and also we're going to talk about there are a number of callers who want to talk about Medicare and some other things. We'll get to those calls in a moment. We are talking with the U.S. secretary of Health and Human Services, Kathleen Sebelius. This is TALK OF THE NATION from NPR News.

    (Soundbite of music)

    COX: This is TALK OF THE NATION from NPR News. I'm Tony Cox. We're talking with Kathleen Sebelius, the United States secretary of Health and Human Services.

    To give you some idea of the scope of her job, Secretary Sebelius oversees a budget of some $900 billion. The department that she leads handles everything from Medicare, Medicaid and the new health care law, two programs that prevent child abuse, improve education and plan for national emergencies. The alphabet soup of agencies under the HHS umbrella include the FDA, the CDC and NIH.

    If you'd like to talk with Secretary Sebelius about the health law, the president's new strategy for HIV and AIDS, or her many other roles, give us call - the number, 800-989-8255. The email address is talk@npr.org.

    Before the break, Secretary, I told you I had a question about Medicare that came in, but before I give you that one, let me say we're getting a lot of calls with people who want to have their own personal health care questions answered, and obviously, you're not in a position to be able to answer each one of those. But could you provide some direction for those people who may not get a chance to ask their particular question?

    Sec. SEBELIUS: Sure.

    COX: Where should they go to get the information?

    Sec. SEBELIUS: Well, Tony, we have a great new website, healthcare.gov. Healthcare.gov just got up and running a couple of weeks ago, and it's part of the Affordable Care Act.

    So when you go to the website, it asks a few questions about where you live and what age you are, what your health status is, because those determine what your options are right now in the insurance market.

    And very quickly, and for the first time ever in history, we have pulled together all of the private programs, all the insurance policies sold in your area that's suitable to you, contact information, as much information as we can. By October we'll add price information - we don't have that quite yet -and all the public programs that you may be eligible for, so Children's Health Insurance, or if you're a vet where the TRICARE services are, Medicare, Medicaid - that never has been pulled together. We also have a timeline of what's going to happen with the Affordable Care Act, what new features are going to be up and running, lots of great health information on prevention and childhood obesity, contact information. So healthcare.gov is a great place to start.

    COX: All right, let's go to the email that I talked about, and thank you, Beverly in Las Vegas, for sending this in: When will the changes to Medicare Advantage kick in, and how will that affect me as a Medicare recipient? How will my costs rise? My Medicare co-pay on prescriptions have already gone up by double and in some cases triple, and the health care bill has not even begun.

    Sec. SEBELIUS: Well, Beverly, as you say, if your co-pay has gone up, if your Medicare drugs have gone up, that has nothing to with the Affordable Care Act. That has to do with rising costs in the marketplace, and it's one of the things we're going to pay a lot more attention to as we move forward.

    In fact, one of the benefits to Medicare beneficiaries is going to be closing the so-called doughnut hole, so the gap that now too many beneficiaries reach when they have purchased about $3,000 worth of prescription drugs, and then they're entirely on their own to do that out of pocket. So this law closes it over time.

    Medicare Advantage programs, which are a choice that beneficiaries can make -do you want to be in traditional Medicare, or do you want a Medicare Advantage program - will still very viable, up and running.

    We're getting the bids right now for next calendar year. We'll have some information out to beneficiaries in later this fall about what their choices are.

    We told the plans that we are not going to make cuts in calendar year 2011. We think they'll have lots of choices at very affordable prices, and 75 percent of the people who choose traditional Medicare will also have some new benefits: no co-pays for preventive care; yearly Medicare preventive checkups, which now are not part of the plan; no co-insurance for various components and closing the doughnut hole. So there's some very good news for Medicare beneficiaries on its way.

    COX: Here's another email. It comes from Dave: I am healthy, a cyclist and a rock climber. The funny thing for me is that I have to pay for special insurance plans because climb rocks. That is to say, I get punished for doing the things that keep me healthy and sane.

    Now my insurance is going up another 20 percent this year. Will this bill prevent insurance companies from including these crazy policy riders, and when will rates start coming down? Dave, thank you.

    Sec. SEBELIUS: Well, Dave, I think that I'm not quite sure about the kind of policy you have right now. What I can tell you is that in 2014, with the new state-based exchanges, we will have some new insurance options, more affordable coverage.

    Lots of folks - I don't know if Dave's in this situation - but if you're a small-business owner, if you're an individual purchasing a policy, if you're part of a farm family, you right now have very few choices. And you pay 20 to 25 percent more than the folks who are working for a big employer, who's got some negotiating power. That's what will change.

    Not only will we not eliminate people with pre-existing conditions, you'll be able to get into an insurance plan, but you'll also have a bigger pool, have some leverage. And those rates are going to be pre-negotiated. So you'll have some choice and some competition. And lower-income Americans will also have some help paying for that insurance.

    COX: If you are just joining us, you are listening to TALK OF THE NATION. Our guest is U.S. Secretary of Health and Human Services Kathleen Sebelius, and we are talking about health care.

    Here's a call that we can take. This is Frank from Charlotte, North Carolina. Frank, welcome to TALK OF THE NATION.

    FRANK (Caller): Madam Secretary, tell me, how are we doing today?

    COX: We're doing fine.

    Sec. SEBELIUS: Pretty good. How are you?

    FRANK: Good. I'm me and my wife and my child, he's a year and a half, and I'm doing the right thing by him, and I buy him health insurance. I can't afford it for me and my wife, and I work for the largest trucking company in the United States of America.

    I can't afford my company health insurance on a weekly basis as it is now. I've gone through the website. I punched all the information in to do the different calculators, and everything comes back to where my company offers health insurance, that's what I'm going to be stuck buying.

    If I can't afford it now, how am I going to be able to afford it in 2014 when I have no choice because that's what they my company provides it, and I'll have no choice? I mean, what's going to be done for people in that situation?

    COX: Frank, thank you for the call. You know, I bet there are a lot of people who think and wonder just like Frank, Secretary, about that.

    Sec. SEBELIUS: Well, I'm hoping that the situation Frank describes, where there's an employer policy, but it's not affordable, hopefully we'll be able to impact by first having some competition in the marketplace. I mean, one of the things that's happening is that too many times in North Carolina, where Frank is, or other parts of the country, one insurance company has the whole ballgame.

    And they rates keep going up, often by double digits, and employers over time have shifted a large portion of those costs to employees. So employees' co-pays go up, employees' co-insurance goes up, and yet they're getting less and less bang for their buck.

    So having a competitive marketplace, having a spotlight on that marketplace I think in and of itself helps. We've already seen some people withdrawing rate reviews.

    We're asking state insurance commissioners to ramp up their efforts to really regulate these rates, look at what the underlying costs are, and a feature of the law may be very helpful to Frank is that one of the things that insurance companies are going to have to start to do is comply with what's called the medical loss ratio.

    So 80 percent of all the premium dollars are going to have to go to pay health costs, not overhead, not CEO salaries, not advertising. We know there are a lot of policies out there right now that don't meet that ratio, where the profit margin and the excess administrative costs well exceed what people are getting.

    If the rates are too high, don't meet the ratio, the customers get a rebate. So there's some strategies in this law which will, I think, really help overall bring some costs down and hopefully make that policy a lot more affordable.

    COX: Would a person like Frank or someone similarly situated, would they be eligible for the exchanges? And how does that work?

    Sec. SEBELIUS: Well, if the employer coverage, and there is a there's a formula that's in the bill - if the employer coverage is more than a percentage of Frank's income, then he would be deemed if he doesn't have affordable coverage through his employer, he would be eligible for the exchange.

    And that's a formula that the state would take a look at, see what his income is, see what he's being charged. And if he's eligible, he not only could go into the exchange but may well then get a subsidy to help him pay that portion of the premium in the exchange.

    COX: All right, we have another caller. This is Tony in Sioux City, Iowa. Tony, welcome to TALK OF THE NATION.

    TONY (Caller): Hello, how are you?

    COX: Fine, how are you, sir?

    TONY: Good. You know what, Frank's she just answered Frank's question, and it's just what I had. I was just kind of curious about that myself. I mean, I currently work for a small company, and we're paying quite a bit every week, and I had the same question.

    I mean, I don't like the coverage I have. It's expensive, and I want to be able to shop around for this.

    Sec. SEBELIUS: Well, in small employers, in your situation, and Tony didn't tell me how big or small the company was, or maybe he did say he was with a big company - small employers will also be able to shop in the new exchange. I think that we forget that, you know, often the mom-and-pop operators are really trying to do the right thing by covering their employees, but they have very few choices and often 25, 20 to 25 percent higher than the big guys.

    So the exchange - the whole idea of exchange is a much larger pool, much more purchasing power, much more leverage on getting discounts on hospital beds and provider rates and drugs, and therefore passing those savings on to employees. So in your situation, you know, your employer is going to have a chance to come in to a very different marketplace.

    COX: Here's another call. This is Jerry(ph) from Cookeville, Tennessee. Jerry, welcome to the show.

    JERRY (Caller): Hi, Tony. Hi, Secretary Sebelius.

    Sec. SEBELIUS: How are you?

    JERRY: Good. Hey, I was just wondering why so many people are just adamantly against this. And several weekends ago, there was a convention in Las Vegas. It was called Netroots, I believe the name of it was.

    Sec. SEBELIUS: Right.

    JERRY: And Speaker Pelosi and the president, they had taped messages that they sent, and Majority Leader Harry Reid, he spoke there. And they all mentioned that they haven't got there where they want to get yet, but we're going to get to the single-payer option and other things that they wanted to get through.

    Now, I looked at their website and then I went to Communist Party USA's website, and they almost mirrored each other on their agendas. I think a lot of people find this kind of frightening.

    COX: All right, thank you for that call.

    [there is more, but there is a word limit for posting here.]
  20. usedtobeperkytina

    usedtobeperkytina Senior Member

    Clay, Alabama
    I listened. Nothing in there about XMRV. But, on the website, you can post your comments.


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