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President's Remarks in Patients' Bill of Rights Roundtable

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The Briefing Room

Office of the Press Secretary

For Immediate Release July 15, 1998


American Medical Association
Washington, D.C.

2:00 P.M. EDT

THE PRESIDENT: Hello everybody. I'd like to make avery brief opening statement, beginning with expressing my thanks towhoever's about to turn that tape recorder off. (Laughter.) I'dlike to thank Dr. Dickey, Dr. Smoak, Dr. Anderson, and all the peopleat the AMA for having us. I thank the members of our roundtable forjoining us, including Secretary Shalala, Secretary Herman, SecretaryWest, Dr. Kizer, the director of the health agency at the VA. And Iwant to say to the members of the press who are here, I am joinedtoday by patients and their families, by doctors, nurses and otherhealth care providers who have widely different experiences andperspectives, but all agree that do need a patients' bill of rights.

More than 160 million Americans are in managed caretoday. At best, the system can drive health care systems around andmake health care more affordable and more accessible for moreAmericans. We should all be encouraged representing at best that acoalition of 25 progressive HMOs this week endorsed the patients'bill of rights. But as we will hear in a few minutes, at its worse,managed care can also dehumanize health care, hamstringing doctorsdecisions, alienating patients, even endangering lives.

In an increasingly complicated health care system weneed a different standard. Traditional care or managed care, allAmericans are entitled to quality care. That is why in my State ofthe Union address I asked Congress to put progress ahead ofpartisanship and to pass a patient's bill of rights.

To do our part to meet this challenge, I signed anexecutive order back in February to extend the protections of thePatient's Bill of Rights to 85 million Americans in federal healthplans. Today, we're taking further action. I am pleased to announcethat the Department of Veterans Affairs, which provides healthservices to more than 3 million veterans, is putting in place a newprocedure to help those veterans appeal health decisions, one of themost important protections in our patients' bill of rights, and Ithank Secretary West for that action.

To ensure, however, that every American is protected bya patients' bill of rights, Congress has to act. In the remainingdays left in this legislative session once again I ask Congress topass a strong and enforceable patients' bill of rights thatguarantees access to specialists so that people with cancer, heartdisease and other life-threatening illnesses can get the health carethey need, that guarantees continuity of care -- for example, so thatpregnant women can have the same doctor throughout their pregnancy,even if a doctor is dropped from a health plan; a bill that makesthese rights real by guaranteeing a remedy to people who have beeninjured or lost family members as a result of bad decisions; a billthat guarantees there will be no secret financial incentives fordoctors to limit care. That is the kind of comprehensive patients'

bill of rights America needs and deserves. We need, again I say,progress, not partisanship.

And now I would like to hear from all of you. I have afew questions I want to ask, but I think it's important for youbasically to make a brief opening statement and tell us what yourexperiences have been. And, Mary, if you don't mind, I'd like tobegin with you.

MS. KUHL: Okay. Well, on October 28, 1989, my husbandand I celebrated our 25th wedding anniversary and he had a massiveheart attack that night. He was taken to the hospital, where thedoctors that attended him said that a large portion of his heart wasdestroyed. But he wasn't really share what they were going to haveto do to help him. So he advised rehab. The HMO denied rehab; theysaid he didn't need rehab. We went in June to have -- he was goingto have a catheter run to find out exactly where the damage was andwhat the damage he had incurred was. We went in, and we waited allday, and finally they came in and said that the HMO was denying againthe procedure. And I finally talked them into letting him have theprocedure, but they said they would not pay for the hospital or thedoctor bill because we had not been pre-certified, which we thoughtwe had been.

They ran the procedure, and they found out that Buddyhad ventricular tatecartia (phonetic), which means that your heartcan speed up any given time, and you'll drop dead, which made him acandidate for sudden death. And he recommended that we go to St.Louis to have an operation done, which they were the best people inthat field for what Buddy had.

The doctor made the appointment for Buddy to go, butagain, the insurance company called us a week before we were supposedto go and told us we couldn't go because they wanted a secondopinion. So on July 6th, when we were supposed to be in St. Louishaving this procedure done, we were at this other doctor's officegetting another opinion. And the doctor said the same thing, that weneeded to go St. Louis. And he called the insurance company that dayand told the insurance company that we needed to go to St. Louis --or that Buddy needed to go to St. Louis.

They didn't do anything because he was going onvacation, and he would be gone for two weeks, and they want it inwriting. So in the two weeks that he was gone, he came back, and hewrote the letter, sent it to the insurance company. They called Budand told him to go ahead, make his appointment. He called and madeit; the earliest we could get in was September 6th. We went down.He had all the tests done -- the catheters and everything. We werealso told that he would only have the test if they could do him on anout-patient basis. Well, you cannot run a catheter into your leg,and just get up and walk out of the hospital. You have to lay still.

The day before he was supposed to have the operation,they came in and told us they had seen something in the catheter thathe was really worried about. So they went in, took him up, and rananother catheter. He came back down, and he said that if they wouldhave done the operation, Buddy would have died on the table --because in July, his heart was beating enough that he could have hadthe operation, but by September it had shut down enough that he couldnot have the operation at all. And the only thing left was a hearttransplant.

So we were talking to the transplant team in St. Louis,and we were again told that -- they came and said the insurancecompany wanted us to come home because they would not pay for it inSt. Louis and said that they would pay for it in Kansas City at theUniversity of Kansas Medical Center. So we came home. He had moretests run. He was supposed to go into the hospital -- they said it

usually takes seven days. We had two days to get all the tests run,and then we had to get out of the hospital. By now --

THE PRESIDENT: You mean the HMO would only let you staytwo days?

MS. KUHL: Yes, they would only let him stay two days.We did all that, and he never got on the list, he just -- on December28, 1989, he dropped dead in our front yard and died in my arms. AndI just don't think HMOs should have that right to make a decisionwhether you're going to live or die. I think it should be up to thedoctors because all the doctors agreed that he needed to be in St.Louis on July 6. And that's my story, Mr. President.

THE PRESIDENT: Well, if we had this kind oflegislation, you would have had that right.

Q Well, he did start a lawsuit against the insurancecompany and it went through all the courts -- it wentthrough the federal court, it went to the court of appeals, and thenfinally it was in the Supreme Court, but they kicked it out, too,because of the bill --

THE PRESIDENT: But ours would take care of that, ourlegislation would take care of the legal bar --

Q I would be very happy that nobody else had to gothrough this.


Mr. Garvey.

MR. GARVEY: In May of 1994, my wife went to Hawaii on avacation. When they landed in Honolulu, she got off the plane, wentto her hotel and realized that she was bruising pretty badly. Shewent to a clinic where they did blood work, and all that. Within acouple of hours they admitted her to the oncology department of theQueen's Medical Center in Hawaii. A couple of days later, she wasdiagnosed with aplastic anemia and transferred to the bone marrowtransplant unit. The doctors in Hawaii started a medical procedure,but recommended a bone marrow transplant.

Several days into the treatment, after several days, theHMO decided that my wife, Barbara, would have to come back toChicago, or a Chicago hospital, for treatment. The doctor in Hawaiisaid she wasn't stable and in no condition to be moved. The firstHMO doctor that he consulted -- that conferred with him agreed thatBarb's condition was not conducive for her to be moved. So the sameday, she was taken off the case -- that doctor -- and another oneassigned who said Barb should come home. He never examined her ortalked to the doctor as far as that goes.

The doctor in Hawaii was getting no cooperation from theHMO regarding Barb's treatment and asked me to call and runinterference and see if I could get an okay for treatment in Hawaii.When I spoke to the nurse in the utilization review section of ourHMO, after discussing it with her supervisor, she said I had toreturn Barb to Chicago or I was refusing services and they would nolonger pay her bill, and that I would have to eat that.

I was also told to put Barb on a scheduled flight fromHawaii to Chicago and send her back at my expense. I asked if Icould send her home on a Medivac and the answer was, no, theywouldn't pay for it.

Barb's condition left her with no immune system and noability to clot if she was to bleed or anything. We had to take herfrom isolation, put her on a commercial flight and expose her to allthe impurities of recirculated air, the pressure changes, which mostpeople here it wouldn't affect at all, but somebody in her conditioncould, and may have, proved fatal.

Sometime between leaving Hawaii and returning toChicago, Barb got a bleed in the brain -- a stroke -- and a couple ofdays later she was diagnosed with a fungal infection. She neverbecame stable enough for the transplant and died nine days later.

Barb was 55. We have seven children. And when shedied, we were married almost 35 years. We had six grandchildren. Inow have nine. It's devastated the whole family -- all the plans inthe future are gone. We -- our daughter was going to be married acouple of weeks later. We had to change that. Another daughter hasbeen hospitalized with depression for that reason. And these aresome of the events that endangered, decreased Barb's odds, andeventually caused her untimely and premature death. To me, it's justobvious the HMO is more interested in saving money than in my wife'slife.

THE PRESIDENT: If this legislation were to pass, one ofthe things that would happen, so it would have been relevant to yoursituation in St. Louis, is that people would be eligible for out ofthe network -- the so-called out of the network treatment if it wasindicated as being in the best interest of the patient, and alsoalways services that are in the nature of an emergency.

We hear stories like this all the time -- thank goodnessvery few of them result in death. But someone who's not there on thescene, who's not a physician, should not be second-guessing a doctorwho's there on the scene prescribing a certain treatment.

MR. GARVEY: It's a shame, but that's what happens.

THE PRESIDENT: I don't think that's ever what anyoneintended to happen from managed care, and I think that it's clear tome that just looking around the country, that even though a lot ofstates have passed these patients' bill of rights, there's no realuniformity to it and there ought to be a clear national rule thatwould cover both of the cases here that you have mentioned.

Dr. Evjy, do you want to comment on this? And if youcould all speak up a little bit so they can hear you. I know we'regetting it -- this is feeding into the mult box, but we need to talka little bit louder.

DR. EVJY: Mr. President, I'm a medical oncologist. I'malso the director of the anti-tobacco control coalition inMassachusetts. And I can tell you from the bottom of my heart weneed a patient -- what you're attempting to do -- (inaudible) --It's an issue that an individual patient -- (inaudible) -- only bythe help of someone like yourself, by our political leaders and by ustrying to get together -- (inaudible) --

I've been practicing for 30 years. And I became amedical oncologist -- I know because I lost my mother when I 15 yearsold, when she was -- 50 years ago, -- (inaudible) -- and I'm surethat that's the motivation. But in those days, oncology was aministry. There was very little -- surgery that you could do to helppatients. So she wasn't a part of my life when I wanted her, when Iwas growing up.

Two or three years ago, our daughter felt a lump in herbreast, and she called her dad -- that's me -- and she said, peoplein my health plan don't want to do a biopsy. What do you think Ishould do? As a father -- not as an oncologist, but as a father, I said, Rookie, whatdo want to do? She said, if I have to even changed my doctor I wantto do it, because I don't want to live with the fear of that lump inmy breast.

Now, Rookie is alive, she's had both breasts removed andshe's had reconstructive surgery and she hopes some day to find ayoung man and live a good life. But I think we owe her life tomodern technology, which my mother didn't have. But the real reasonwhy Rookie still lives is because she decided to fight for herself.She even changed her physician and she insisted, and I endorsed itand supported her as a father, not as a medical oncologist --(inaudible) -- I would be facing with and sharing with her at the endof her life now, I know in my heart if she hadn't stuck up forherself.

Just yesterday a patient came into my office with an armas big as your leg from lymphedema after a mastectomy and infectionin the arm. I'm a specialist, but even I didn't have the wherewithalto help her. I wanted her to the Dana Farber Cancer Institution --and it's taken her months to get permission to do this. And shebelieves -- I don't believe it, but she believes that the only reasonwhy the medical director gave her permission was because of fear thatif it got into the newspapers it would be a problem, since in ourstate, in Massachusetts we're trying to pass omnibus patient rightslegislation ourselves.

So I have to tell you, if I give my last breath to this,I'm going to work with people like yourself, my colleagues at the AMAand others to make a difference so that patients, when they're sick-- they're happy when they're well, but when they're sick they don'thave to mistrust who I'm working for and they know that I'm going tobe there to make sure they get access to all the hope that moderntechnology brings. So that's what I'm here for and I thank you verymuch.

THE PRESIDENT: Did your daughter, when she had thesetests, did she have to change doctors and medical plans?

DR. EVJY: She did. She didn't change plans, but shechanged doctors.

THE PRESIDENT: Because one of the things that we hear alot of complaints about that is not totally unrelated to the storythat Mary and Dave had in their lives, but has more specificapplication to a person like you, is that a lot of people complainthat basically there's not access to specialists and specialist careat the time they needed them in these plans. Your daughter deservesa lot of credit. That's what we really need, is aggressive healthcare providers urging people to get these tests, not flip them off.Because a lot of people go into denial, and they don't want to dealwith these tests, and the responsible thing is for the physician toget them to do that.

Q I mean, when you're sick, Mr. President, and youhave the burden of worrying about your life and well-being, the lastthing you need is to have to fight with a bunch of other people toget the care which is essential to your well-being. It's just notright.

THE PRESIDENT: Well, thank you for sticking up for yourfolks.

Beverly Malone is the President of the American NursesAssociation, and maybe she would like to talk a little bit about thisfrom her perspective.

MS. MALONE: Thank you, Mr. President, for allowing meto be part of this discussion. And thanks for your leadership in thedevelopment of patients' bill of rights and making it such a centralpart of the agenda.

I'm here representing registered nurses all around thecountry, as patient advocates and providers of care who areconstantly dealing with the consequences of a health care system sofocused on cost that quality is lost; a system so obsessed withshort-term cost that the common sense, proven cost-savings ofpreventive care and high quality are lost, as well.

I heard a story the other day that really caused megreat concern. We hear a lot of stories -- as you pointed out, Mr.President -- but they get to you, under your skin and deep in yourheart. There was a patient, a young woman, who was dealing withadvanced breast cancer, which is not an easy disease to deal with.And out came the story about the young woman's lump in her breastthat she found.

She didn't know anything about breast cancer. She wasnot from a medical family and she had no previous information. Shehad no history of it in her family. And she was told that the oddswere very low that this lump would be malignant. And so her planwould not pay her to see a specialist because she was too young andthe malignancy was unlikely.

By the time she had developed enough symptoms -- youknow, you have to show enough -- to get to a specialist, hercondition was considerably advanced. And she's paying for thoseconsequences. And the nursing care that is required at this point isvery different than what would have happened if we had gotten thisyoung lady to the kind of care that she needed at an earlier stage.

The reason that it makes my blood boil as a nurse isthat we see this all the time; that our job is to relieveunpreventable suffering, but when suffering is exacerbated throughthe greed or indifference of a system and an industry, there's noexcuse that is acceptable.

Mr. President, we need the patient bill of rights sothat every plan is held accountable and every patient is empowered asa partner in making health care decisions. We need to make sure thatthe accountability for quality, cost-effective care is shared amonghealth plans, health systems, providers and consumers. I want to bevery clear: Nurses at the bedside know exactly what happens whencare is denied or comes too late or is inadequate so that it leads toinexcusable suffering. So the nurse at the bedside, whether in thehome or the community -- the need for patient protection and patientadvocacy is played out every day.

We appreciate your efforts, your leadership, and we willcontinue to work toward getting that patients' bill of rights forevery citizen in this country. Thank you, Mr. President.


Mr. Flemming, tell us your story.

MR. FLEMMING: Thank you, Mr. President. My story isabout my sister, my younger sister, who, at age 38, had a new babyand found a lump in her breast. She went to the doctor. They didthe test, found it was malignant. They gave her a mastectomy. Theythought they had it all. They put her through a course ofchemotherapy -- this is in 1991. In August of 1991 they determinedthat, in fact, the cancer had spread to her lungs.

She had been under the same health care plan forapproximately 17 years. And her doctor at that time, the oncologistwith the Fred Hutchinson Center in Seattle, said, your only realchance for survival is the high-dose chemotherapy and the -- bonemarrow transplant, which is taking your bone marrow, cleaning it andputting it back in after they give you the high-dose chemotherapy--which had been for about three or four years highly recognized andvery successful.

The Fred Hutchinson people said -- they tested her, thecancer had to be isolated to your breasts and lungs so it could betreatable with the high-dose chemotherapy. She tested successfully.They then told her that she had about a two to three-month windowwhere this treatment could be effective to save her life and that sheneeded a preauthorization letter from her insurance carrier, or inthe alternative, $250,000 in cash before they could start.

So she made application immediately in September for thepreauthorization. And her insurance company said, we won'tpreauthorize it, but we don't deny it, we'll take a look at it. Andthey proceeded to take a look at it for September, October, November,and then finally on the last day of the year, December 31, they senther a letter -- which was two short paragraphs -- saying, this isexperimental, it's denied; if you have any further information writeto us at this address in Ohio.

So the family hired some lawyers who were specialists incoverage, who researched it, wrote a letter to the insurance carriershortly thereafter and said, wait a minute, you signed these DukeUniversity protocols, you signed on that -- this wasn't experimental,you've provided in all these different cases. They two weeks laterwrote back and said, thanks for the additional information, you'reright, we've looked at it, it is covered and we'll authorizeimmediately with Fred Hutchinson.

So she went back to Fred Hutchinson and retested for theprocedure and by that time the five and a half, six months had goneby and the cancer had spread to her brain. She was no longereligible. She died 10 months later.

The insurance companies have taken the position thatwithout regard to bad faith, without regard to wrongful denial ofbenefits there is no remedy because it's an ERISA plan. The courtshave all said this horrible tragedy, needless loss of life, but it'snot up to us, it's up to Congress, Congress has to change this.

I guess it's my -- my thought is a patients' bill ofrights is important. Even if we can't get the ERISA block takenaway, if we just had reasonable and effective notice of what yourrights are -- if in September of '91 my sister would have know thatshe had rights to go into federal court and demand the kind of policythat she had paid for over the last 19 years, she'd be alive today.But the first mention of ERISA or any appeal rights came two yearsafter she was dead. They just -- they wrote a little simple lettersaying it's not covered, it's experimental, send us information inOhio. And, like you said, a person who's fighting for their life,and has a brand new baby, they're not out gathering legal informationto send off to their insurance carrier in Ohio hoping that they'llget a quick turnaround. It's just doesn't happen.

THE PRESIDENT: Carol Anderson is a billing manager inan oncologist office. You've heard all these stories. Have you seenthis happen a lot? I think it's important since you do this, andthat we've got the press coverage here, that you say whether or notyou think we looked around and found all these people who are justneedles in haystacks or if they're typical stories. That's what wehave to convince the Congress of. This is not unusual. We haven'tfound the only three people in America who could tell these stories.

MS. ANDERSON: Oh, definitely not. This happens everyday. I see denials on an ongoing basis. The majority of theobservations that we request are denied -- initially denied. Youcall, you give the information that -- the patient's name, subscribernumber, all the little details -- and that's all they want. And thenthey call you back a couple of days later and they say, we're sorry,that's denied. So then you start the appeal process. You give thema little more detailed information -- whatever they'll take. Butthey only want to take limited amounts of information right up front.So you give them more information and you wait for the next denial.

And then you get to the next level. Possibly at thatlevel you get somebody who has a medical background, maybeutilization review now. Up to then, you're just dealing with clerks.So you get to utilization review, but you've already gotten two orthree denials, so the odds of getting an approval are very slim.Sometimes we go as far as sending book chapters from medical books tosay that this is approved treatment plan, this is not experimental,this is what a patient needs.

I could give you examples that are just as horrifying asthis. A 12 year old boy came in to see one of our doctors and had abone lesion. It was cancer. The doctor said he's an excellentcandidate for a -- (inaudible) -- procedure. Well, the insurancecompany said, oh, no, our only approved treatment plan would be anamputation. So we went through the denial process, the whole way tothe medical director, got the father involved -- the insurance wasthrough his employer -- got the employer involved. It took us almostfour months to get an authorization. But with that, the insurancecompany would finally say they would authorize the procedure, butthey would only pay whatever the amputation would have cost.

So the boy had the procedure done. A few months laterhe came back with some additional pain, ran him through anotherstaging process and found that he had a recurrence, and he did haveto have his leg amputated. But if he would have had this done fourmonths before, he would be out there running and playing today. Butnow he's dealing with a prothesis -- it was an above-the-kneeamputation.

Looking at -- once you get an authorization, then youget the rejection once you submit the claim. We had an authorizationfor a lady who had a cancerous tumor removed. There was some -- itwas an outpatient procedure approved by the insurance company. Shehad some complications in the operating room, and the doctoranticipated that -- that's why we requested inpatient, but they wouldonly approve outpatient. They admitted her into the hospital. Oncethey admitted her, the insurance company threw out the outpatientauthorization and now they're denying her entire claim, saying wedidn't have pre-certification for an inpatient authorization.

So I see this every day. But I think the hardest partof my job is facing a patient and telling them your insurance planhas told us that you're denied coverage -- this is what the doctorsrecommended, but we're sorry. Just like that. If you don't havecash, we can't treat you. And it's not because the physicianswouldn't do it -- most of the physicians I have ever worked with, andI've been in this field for a long time, would do free care. But thehospitals -- a lot of hospitals nowadays operate in the red and theywant that authorization, or they want that money from the patientup-front before they're going to get in that door.

So you fight for the patients. You advise the patientsto be aggressive. You do these things. You finally get approval,but they're so late now. It's too late to help the patient. And Ithink we need this bill of rights so that the appeal processes haveto be more timely, that patients who are seeing an oncologist can seethem when they have a problem, not go back to your primary care, waitfor another referral, and then make the appointment. They need tosee specialists, whether it's an oncologist or any kind of aspecialist. They're having an ongoing problem, they need to see thatdoctor. They don't need to wait for this referral process or theauthorization to get that care. Patients need to be assured that thecare that they get is what's dictated by their physician andthemselves, not by somebody sitting in a boardroom making thesedecisions -- never seeing a patient, never an exam. How do theyknow what's best for that patient?

I think that -- being with the Center for PatientAdvocacy, I've learned that speaking out and telling the press,Congress, whoever, that these are the things that we need and thatsomebody has to hear our story, whether it's the patient, whetherit's the health care provider, somebody has to hear it and somebodyhas to do something. And it can't be by partisanship and politics.I mean, we can't let that hurt what we need. We need people to worktogether to do this.

THE PRESIDENT: I honestly believe that -- I don't seehow -- I don't think that this has anything to do with any kind of --it's not a political issue. And I think everybody who's everpersonally experienced it feels the same way.

And the only thing I would like to emphasize for the--especially for the public record here is that one of the thingsthat we have proposed, that the insurers have been so resistent to inour bill, is an appeals process -- some way of enforcing thesubstantive guarantees of the patients' bill of rights. But you have-- we just sat here now and heard all these examples of your tragedy,your tragedy, your tragedy, and your daughter slipped the noose soshe saved her life, which demonstrates that medical care delayedmight as well be denied. I mean, delayed medical care can be a deathsentence, pure and simple. And maybe you save money that way ifyou're running the operation, but that's not what it is set up to do.

I just want to say, from my point of view, your verybrave and moving statements today have made an utterly overwhelmingcase that, yes, we need very clear substantive rights and disclosure,as Mick said, in the law, but you've got to have some way ofenforcing this because -- look, I deal with this all the time inother less tragic contracts. We have trade disputes with othercountries. They know that if we're right and they're wrong and theycan drag it out until kingdom come, it doesn't matter if we win. AndI can give you lots of other examples.

I'm a lawyer -- from the time I was in law school wewere taught that justice delayed is justice denied. And we spendliterally -- the legal profession spends years and years and years oftime trying to figure out how to expedite processes without doinginjustice to either side. This is a clear case of that principlewhere the stakes are a heck of a lot higher than they are invirtually any other area of our national life. And so I think -- I

don't see how anybody could listen to all of you and walk away fromthe responsibility to pass this bill.

Nancy, would you like to say anything?

DR. DICKEY: Mr. President, you said it wasn'tpolitical, but, unfortunately, the solution appears to be political.We have the ability in this country, as we've heard, to deliverextraordinarily high-quality care, but the delivery system in somecases gets out of balance as we try to balance the costs and scienceof what we can do. And too often today, bean counters, accountants,or clerks are the ones who insert themselves into thedecision-making, as we've heard too poignantly.

State legislators and governors in over 25 states haveattempted to try to create some of that balance, but as you said,it's a variable from state to state -- I come from Texas where we'vepassed one of those laws and it was instantly in the appeals court,so we're still not sure what rights have accrued across the board.

Last Saturday in The New York Times, federal judges werequoted as saying, we need to have a legislative solution, and so itis a political issue and we need to call our congressmen to hearthese stories and the stories of your constituents, of our patients,about what needs to happen.

We thank you for the leadership you've given us toestablish the bill of rights. We started asking about patients'protections back in the 103rd Congress; it's now the 105th Congressand we're still asking. We appreciate your leadership, yourwillingness to bring the issues today to the American public, and welook forward to working with you to support the bill of rights in itsentirety --the appeals, the prompt appeals, the ability to holdpeople responsible for decisions that they make.

Your quality commission, unlike some commissions thathave been called, looked at the issues with Secretary Shalala andSecretary Herman, American Nurses Association -- our own Tom Ruden(phonetic) was there -- they laid out what the problem was and cameup with a set of solutions that, while they may not be perfect, willcertainly go a long way to addressing our patients' needs.

Now, your daughter is not the only one that slips thenoose; we can all tell stories about the aggressive, feisty physicianor patient who fights the system. But somehow it doesn't seem likewe should have to teach our young physicians how to argue, how tofight, in order for patients to get the care that they need. Andyet, that's what they spend their time doing today -- trying tojustify their decision, trying to force the system to move moresuccessfully.

So we look forward to the opportunity to work with youto make the bill of rights a reality so that we can get back totaking care of our patients, providing the care that we know how toprovide and hopefully moving the science forward so we'll have bettersolutions for the next generation or next decade of patients that wehave.

We're honored to have you join us as further evidence ofyour support and we believe with your continued and strong supportthat we can make sure patients -- not just the feisty, angryphysicians, but of all physicians, of all nurses -- can get the carethat they need and that we know how to deliver. Thank you.

THE PRESIDENT: Secretary Shalala and Secretary Hermanco-chaired this quality health care commission for me, and we hadrepresentations from the nurses, the doctors and consumer groups,from business groups and insurers. And they came up with therecommendation of passing a strong patients' bill of rights. And Iwondered if either one of them would like to say something or ask anyof you a question and to comment about where we are.

SECRETARY HERMAN: Well, I would just comment verybriefly, Mr. President, that it's clear that we all know we've beenhaving this debate for a long time about the need to strengthenERISA, because as you have correctly pointed out, a right without aremedy is really no right at all. And certainly -- (inaudible)--gives additional credence to that. I believe that we need to do atleast three things in strengthening ERISA protection. Clearly, weneed to look at the relationship between right and remedies.

Secondly, we must not only have a fair process, as Carolwas talking about, in terms of appeal, but it needs to be faster.And I would be interested in just some ideas on just timing, when wetalk about speeding up the process.

And then, thirdly, I think as we heard from both Maryand David, we really need to have some kind of protections, remedieswhen patients are wrongly denied care. And if we don't find a way toaddress these three issues -- we have 122 million Americans that aredepending on us to strengthen ERISA, to guarantee these protections,and it won't happen unless we have federal action in this area. SoI'd be particularly interested in just the ideas -- (inaudible) -- onspeeding up the protection process for appeals.

SECRETARY SHALALA: Mr. President, there's a lot ofdiscussion around about Americans wanting government out of theirbusiness. I think this is one place where the citizens of ourcountry, the average citizen, would like a little government to makethe playing field even.

A patients' bill of rights means for everyone, no matterwhat their insurance plan is, no matter where they live -- just asgood health, life or death ought not to depend on whether your planis covered by your state or whether the national government hasjurisdiction. Your right to get access to your oncologist, youraccess to emergency services, whether or not you get injured and youand your doctor recommended a certain course of action -- you oughtto be able to get compensation. These rights are for everyone.

And this is a case where the national government reallyhas to act so that no matter where we live or what kind of healthinsurance we have, our life or death isn't determined by the qualityof medicine and by our interaction with our physicians and our nurses-- with a very good health care system. This will make it work foreverybody. And I think we're running out of time. We need to dothis now.

THE PRESIDENT: I would like to just say, again, I thinkit's important to point out that there are a lot of good managed careoperations. They are put at an unfair disadvantage when other peoplebehave in an unscrupulous way. If you were running a managed careoperation and you did everything you could do to make sure thesedecisions were made like this so nobody every died from delay, andyou were willing to pay a little more to do it and risk a little moreand invest a little more -- why should you be put at a competitivedisadvantage because somebody else is out there putting lives atrisk?

So I think the industry itself, the good people in theindustry, deserve this. And they would be better off if we had thisbill because the people who are out there doing the right thinganyway shouldn't ever be at any kind of financial disadvantage.

Alexis asked a question -- I don't know, maybe Carol orsome of the doctors, somebody else would like to answer it -- butwhen you think about all the experiences that we heard about, thedelays -- how come his wife got put on a plane when she should havebeen taken care of in Hawaii; why didn't they get an answer in 30days so this procedure could be performed; why didn't his sister gether answer quicker -- how do you deal with what -- even if this billpasses exactly as we proposed it, okay -- even if the bill passesexactly as we've proposed it, there will be health care plans thathave certain premiums in return for certain coverage. And somebodyhas to make a judgment about whether -- what is covered. What's theright way?

Well, I was struck when Carol was describing this, abouthow long -- how many times she had to keep calling back before shegot to somebody that even knew as much as you do about it, much lessas much as a doctor does. So, what is the right answer, practically,to the systems that the HMOs and the insurers should have for makingthese decisions in a timely fashion so we're not out there lettingpeople die just by kicking the can down the road?

Q: I think that if you call for an authorization andif it's something that the clerk can't give, I think immediately itshould be passed up. I don't think that a denial just has to begiven. I think if she can't give the authorization -- he or she --that at that point it needs to automatically be raised up to thelevel where there's somebody with medical knowledge. Sometimes youget an LPN, and LPNs are great -- I mean, they're wonderfulassistants in a physician's office -- but again, they don't have theknowledge that maybe a working nurse did, or a doctor that could makethat ultimate decision.

They say a lot of the HMO companies have peer reviews.The ones that we've been able to get to request a peer review, we'venever been able to get a physician who is in the same field as theauthorization we're requesting. We had an orthopedic patient who wehad a peer review by a dermatologist. I mean, he denied it, but whatdid he know about orthopedics?

So I think that when the initial authorization can't begiven, it needs to be automatically sent to the next level, and itneeds to be done in a timely fashion -- is it 24 hours, 48 hours, 72hours -- that somebody else is going to look at this claim, look atthis request, and say, yes, this is what the patient needs. Or ifthey're going to deny it, maybe go to the next level. I don't thinkit should have to come back in writing and then you're waiting foreven the mail. So you're a week sometimes if you're waiting just forit to come back in the mail -- an authorization.

THE PRESIDENT: Dr. Dickey, has the AMA spoken to thisdirectly?

DR. DICKEY: Actually, we have a number ofrecommendations. We believe that where there are pre-made decisions,many of these companies may well have something on an algorithm, thatthey simply use processes to wait until they walk down the algorithm,that those need to be straightforward, so that if a patient has alimitation on coverage, they know that up front and can examinealternative ways to get care.

And where there's a set of decisions that requiremedical substantiation, then there needs to be a time line. Again,whether it's 72 hours, or seven days, certainly none of thesecompanies would accept the fact that you expected the coverage to bein place even though you hadn't sent your check in, but you werethinking about sending the check in, so they should function with thesame businesslike manner that they expect their constituents -- mypatients -- to act in. And again, if we know up front what that is-- but then Secretary Herman is absolutely right, there has to besome mechanism that says, if you have seven days to respond, you'reheld responsible to respond in that seven days, or the assumption isin the patient's favor that you're going to cover it and you're goingto get the care.

Now, one of the things that I find that works for me isI demand some responsibility. When I call and the company says, I'msorry, the patient can't stay in the hospital, and I'll say, I needyour name -- I usually get a first name -- I'll say, no, no, I needan I.D. or a last name. Usually the question is, why, and I saybecause I'm going to put it down here in may chart so that if thepatient and I end up in court later on, you can come with me. Youknow, I don't have near as much trouble talking to a doctor afterI've had that conversation.

But we shouldn't have to use those kinds of tactics.The rules should be clear, and then patients should be able to say,I'm willing to play by those rules, or I'm going to go to my employerand request a different coverage because I don't like those rules, Iwant a different kind of rules. But as long as the rules are underthe table and hidden, then no one knows how to play the game, and weinevitably have delay of games that hurt people.

THE PRESIDENT: It looks to me like, too, there ought tobe very, very clear rules whenever a doctor certifies that thecondition is life-threatening. They ought to -- I think they oughtto be able to kick it right up to the -- make a decision in 72 hours,then that gives -- then they ought to have no more than a week forreconsideration, and then you ought to have your remedy kick in soyou can get -- the whole thing will be over. And I think the courtshould give whatever -- however the remedies work -- it depends onwhether our bill passes as it is, but that ought to be resolved in alimited amount of time.

I mean, they are -- when my mother got sick and wasconsidered for various kinds of treatment, most of which she turneddown because she thought she was too old and didn't want to bumpanybody else out of it, but I really, just by sort of filling my headwith all of this, I became much more sensitive about the time. Imean, to a lot of these people, the difference in 48 hours is aneternity about whether a given procedure will work or not -- andyou're just out there fiddling around. I mean, it's just -- it'sabsolutely inexcusable.

And a lot of these people -- like when you ask them fortheir name -- a lot of these people are following the path of leastresistance. They're doing what they think will please the people forwhom they work. They're not out there trying to kill your patients.They're out there doing what they think is going to please the peoplethat cut them a check every two weeks. And we've got to change that.

SECRETARY SHALALA: Mr. President, one of the thingsthat we're talking about is, of course, the spending of money and theconcern about health plans, that they're trying to reduce theiroverall exposure. But I think one of the points everybody's made isyou can actually save money if you make timely decisions; you couldsave money if we paid for biopsies right away and didn't take risks.

The patients' bill of rights is not about spending moremoney. It, in fact, could save money over the long run if peoplehave access to emergency rooms, if they get all the information aboutwhat they're eligible for.


Q I agree with that. I think doing the right thingin a timely fashion not only is good from a human point of view, itrelieves the issues of trust, the uncertainty of time when patientsare very ill; but it's the most cost-effective thing to do. It is.I can take a complicated cancer patient problem and resolve it in amatter of minutes using sparse tests -- where someone of lessexperience just can't do it. And it's more expensive and it's moreburdensome to the patient.

I mean, going to the physician when your life isthreatened and going to your insurance company should be to go tofriends who are going to help relieve you of the burden of youruncertainty of your life and your well-being. And instead we have asituation where it becomes another problem to be endured. Now that'sjust wrong. If I tried to do that in my practice, issues of informedconsent, I have to tell patients about what's happening to them. Whywould it be different for an insurance plan? If patients don't likewhat the recommendations are, they have recourse to go see someoneelse. I'm held accountable for what I do. It isn't just patients'rights, bill of rights, it's basic human rights is what we're talkingabout here.

MR. FLEMMING: Mr. President, one of the things thatSecretary Herman pointed out, which comes into play even more now, isthat the ERISA laws which govern the vast majority of health planswere written in 1974. And medical technology has gone so far so fastthat, for instance, to have a meaningful appeal period under ERISAtoday, where you have cancer treatments that need to be done today --or like you said, within 48 hours or at least a week -- and ERISAsays that insurance carrier has 90 days to respond, and they takethat 90 days, especially in cases like my sister's, they take that 90days-plus, counting that you're not going go in. And they say, well,we're looking at it, we're making a meaningful review of this, whilethey know from day one that if they take even the 90 days, thechances that they'll ever have to pay for that particular bone marrowtreatment have gone to almost zero.

And so you have to have, I think, a revised appealperiod and response period to deal with the modern technology ofmedicine. And then you also really have to have, like you say, youknow, rights without a remedy. And I think, frankly, that theinsurance industry, just like every other industry, responds prettyquickly to exposure, if you will, from not just -- you know, anegligent decision is one thing, but if you make a bad faithdecision, they respond very quickly to the concept of having exposurefor making a bad faith decision, especially in a life and deathsituation.

SECRETARY WEST: Mr. President, I endorse that. You pointedout that at VA we see 3 million patients a year. Well, we're yourlargest health care provider in the country. And it is clear to us-- and the announcements you just made about our appeals system --that we talk about an entire appeal process that had to be calculatedin terms of days, not months. To not have that kind of time line atwork is to fail to acknowledge I think the central theme of so muchof what has been said around this table, and that is the decisions inhealth care that are made in a patient's case are to the patient andthe family not merely decisions of organizations doing theirbusiness, but decisions that may be the most important in thatpatient's life and in that family's life.

That's what I think is so important about the patients'bill of rights, one of the things you have us doing, we at VA, nowthat we are going to have an external appeals process that overseesour internal appeals process, is to acknowledge that no humanorganization can really successfully improve itself without someoutside ability to look at what it's doing.

Since 1960, for example, we've had patients' advocates.We now have a patient advocate at every single medical center, all173 of them. Those are the kinds of things you have envisioned inthe patients' bill of rights and it's what you have us doing forveterans under the patients' bill of rights.

SECRETARY SHALALA: I think that's part of the point,Mr. President. You've made sure that everyone who is in a federalplan has these rights. Why shouldn't everyone in a private plan havethem? And that requires the Congress to act.

Q The patient bill of rights moves the patient to apartner in their health care. And if we're serious about going intothe next millennium and using prevention as a model, our patients aregoing to be our partners. And this bill of rights is like foundationfor the patient to stand on to say that we're partners in our healthcare. We need the information.

The advocate issue is a great one. We need ombudsmen toexplain what these health care plans are about. How can you makewise decisions if you don't even understand what your health care

plan includes. And the patient bill of rights is instrumental inmaking sure that you have information, and that empowers arepatients, and will empower our providers to work with our patients.

Q Mr. President, we believe that making our patientspartners, giving them information, whether it's about health care orabout coverage, and helping them make decisions that work best forthem is in the best interests of the insurers, the employers who payfor it, the doctors and the nurses, but most importantly ourpatients.

We appreciate everything you've done to help put this inthe center of the field, the highlight. We're looking for bipartisansupport, because although the solution may be political, these areapolitical issues. And we look forward to working with you. Wethank you very much for coming here and putting these issues on thetable for the American public, and look forward to working with youto make sure that before this Congress closes we can say this hasbeen a success for our patients.

THE PRESIDENT: I want to thank all of you. This hasbeen very helpful to me and to members of our administration and Ihope to the press and to the public. So thank you for hosting us.And I want to say a special word of thanks to Mary and to David andto Mick and to Dr. Evjy and to Carol for relating some painfulpersonal experiences.

And I would just leave you with this thought: For me,this is about even more than health care; this is about how peoplefeel about America. I mean, for six years I've worked hard to makethis country work again, to give people the sense that they can bereally not only proud of America, but they can feel that it is a fairand decent place where everybody has a chance. And that obviouslyhas to apply to decisions of life or death in the health care field,just as much as going to vote, getting a job, living in a safeneighborhood.

These stories are not the kind of stores any American ofconscience would ever want to be told in the United States. And it'snot the United States we want as we stand on the verge of a newcentury. I know it's been painful for you, but you've done yourcountry a great service today, and I thank you very much. Thank you.

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What's New - July 1998

IRS Reform Act

Year 2000 Computer Problem

Agricultural Issues

Health Care Issues

Patients' Bill of Rights Roundtable

Kassebaum Kennedy Law

The Boys Nation Class of 1998

Pass A Patients' Bill of Rights

New Handgun Safety Protections

Social Security Reform

Girls Nation Event

PBS Dialogue on Race

Honor Officer Chestnut and Detective Gibson

Discipline and Safety in Schools

Youth Anti-Drug Media Campaign

Education Issues

Quality of Nursing Home

200th Birthday of U.S. Marine Corps Band

New Grants To Fight Crime

Medal of Honor to Robert R. Ingram

Fourth of July, 1998

New GDP Numbers