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THE WHITE HOUSE

Office of the Press Secretary


For Immediate Release July 15, 1998
                        REMARKS BY THE PRESIDENT
                 IN PATIENTS' BILL OF RIGHTS ROUNDTABLE
                      American Medical Association
                            Washington, D.C.

2:00 P.M. EDT

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

More than 160 million Americans are in managed care today. At best, the system can drive health care systems around and make health care more affordable and more accessible for more Americans. We should all be encouraged representing at best that a coalition 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 doctors decisions, alienating patients, even endangering lives.

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

To do our part to meet this challenge, I signed an executive order back in February to extend the protections of the Patient's Bill of Rights to 85 million Americans in federal health plans. Today, we're taking further action. I am pleased to announce that the Department of Veterans Affairs, which provides health services to more than 3 million veterans, is putting in place a new procedure to help those veterans appeal health decisions, one of the most important protections in our patients' bill of rights, and I thank Secretary West for that action.

To ensure, however, that every American is protected by a patients' bill of rights, Congress has to act. In the remaining days left in this legislative session once again I ask Congress to pass a strong and enforceable patients' bill of rights that guarantees access to specialists so that people with cancer, heart disease and other life-threatening illnesses can get the health care they need, that guarantees continuity of care -- for example, so that pregnant women can have the same doctor throughout their pregnancy, even if a doctor is dropped from a health plan; a bill that makes these rights real by guaranteeing a remedy to people who have been injured or lost family members as a result of bad decisions; a bill that guarantees there will be no secret financial incentives for doctors 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 a few questions I want to ask, but I think it's important for you basically to make a brief opening statement and tell us what your experiences have been. And, Mary, if you don't mind, I'd like to begin with you.

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

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

The doctor made the appointment for Buddy to go, but again, the insurance company called us a week before we were supposed to go and told us we couldn't go because they wanted a second opinion. So on July 6th, when we were supposed to be in St. Louis having this procedure done, we were at this other doctor's office getting another opinion. And the doctor said the same thing, that we needed to go St. Louis. And he called the insurance company that day and 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 on vacation, and he would be gone for two weeks, and they want it in writing. So in the two weeks that he was gone, he came back, and he wrote the letter, sent it to the insurance company. They called Bud and told him to go ahead, make his appointment. He called and made it; the earliest we could get in was September 6th. We went down. He had all the tests done -- the catheters and everything. We were also told that he would only have the test if they could do him on an out-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 that he was really worried about. So they went in, took him up, and ran another catheter. He came back down, and he said that if they would have done the operation, Buddy would have died on the table -- because in July, his heart was beating enough that he could have had the operation, but by September it had shut down enough that he could not have the operation at all. And the only thing left was a heart transplant.

So we were talking to the transplant team in St. Louis, and we were again told that -- they came and said the insurance company wanted us to come home because they would not pay for it in St. Louis and said that they would pay for it in Kansas City at the University of Kansas Medical Center. So we came home. He had more tests 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 stay two 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 December 28, 1989, he dropped dead in our front yard and died in my arms. And I just don't think HMOs should have that right to make a decision whether you're going to live or die. I think it should be up to the doctors 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 of legislation, you would have had that right.

Q Well, he did start a lawsuit against the insurance company and it went through all the courts -- it went through the federal court, it went to the court of appeals, and then finally 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, our legislation would take care of the legal bar --

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

THE PRESIDENT: Thank you.

Mr. Garvey.

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

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

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

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

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

Sometime between leaving Hawaii and returning to Chicago, Barb got a bleed in the brain -- a stroke -- and a couple of days later she was diagnosed with a fungal infection. She never became stable enough for the transplant and died nine days later.

Barb was 55. We have seven children. And when she died, we were married almost 35 years. We had six grandchildren. I now have nine. It's devastated the whole family -- all the plans in the future are gone. We -- our daughter was going to be married a couple of weeks later. We had to change that. Another daughter has been hospitalized with depression for that reason. And these are some of the events that endangered, decreased Barb's odds, and eventually caused her untimely and premature death. To me, it's just obvious the HMO is more interested in saving money than in my wife's life.

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

We hear stories like this all the time -- thank goodness very few of them result in death. But someone who's not there on the scene, who's not a physician, should not be second-guessing a doctor who'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 anyone intended to happen from managed care, and I think that it's clear to me that just looking around the country, that even though a lot of states have passed these patients' bill of rights, there's no real uniformity to it and there ought to be a clear national rule that would cover both of the cases here that you have mentioned.

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

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

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

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

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

Just yesterday a patient came into my office with an arm as big as your leg from lymphedema after a mastectomy and infection in the arm. I'm a specialist, but even I didn't have the wherewithal to help her. I wanted her to the Dana Farber Cancer Institution -- and it's taken her months to get permission to do this. And she believes -- I don't believe it, but she believes that the only reason why the medical director gave her permission was because of fear that if it got into the newspapers it would be a problem, since in our state, in Massachusetts we're trying to pass omnibus patient rights legislation 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 AMA and 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't have to mistrust who I'm working for and they know that I'm going to be there to make sure they get access to all the hope that modern technology brings. So that's what I'm here for and I thank you very much.

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

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

THE PRESIDENT: Because one of the things that we hear a lot of complaints about that is not totally unrelated to the story that Mary and Dave had in their lives, but has more specific application to a person like you, is that a lot of people complain that basically there's not access to specialists and specialist care at the time they needed them in these plans. Your daughter deserves a lot of credit. That's what we really need, is aggressive health care 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 deal with these tests, and the responsible thing is for the physician to get them to do that.

Q I mean, when you're sick, Mr. President, and you have the burden of worrying about your life and well-being, the last thing you need is to have to fight with a bunch of other people to get the care which is essential to your well-being. It's just not right.

THE PRESIDENT: Well, thank you for sticking up for your folks.

Beverly Malone is the President of the American Nurses Association, and maybe she would like to talk a little bit about this from her perspective.

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

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

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

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

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

The reason that it makes my blood boil as a nurse is that we see this all the time; that our job is to relieve unpreventable suffering, but when suffering is exacerbated through the greed or indifference of a system and an industry, there's no excuse that is acceptable.

Mr. President, we need the patient bill of rights so that every plan is held accountable and every patient is empowered as a partner in making health care decisions. We need to make sure that the accountability for quality, cost-effective care is shared among health plans, health systems, providers and consumers. I want to be very clear: Nurses at the bedside know exactly what happens when care is denied or comes too late or is inadequate so that it leads to inexcusable suffering. So the nurse at the bedside, whether in the home or the community -- the need for patient protection and patient advocacy is played out every day.

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

THE PRESIDENT: Thank you.

Mr. Flemming, tell us your story.

MR. FLEMMING: Thank you, Mr. President. My story is about my sister, my younger sister, who, at age 38, had a new baby and found a lump in her breast. She went to the doctor. They did the test, found it was malignant. They gave her a mastectomy. They thought they had it all. They put her through a course of chemotherapy -- this is in 1991. In August of 1991 they determined that, in fact, the cancer had spread to her lungs.

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

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

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

So the family hired some lawyers who were specialists in coverage, who researched it, wrote a letter to the insurance carrier shortly thereafter and said, wait a minute, you signed these Duke University protocols, you signed on that -- this wasn't experimental, you've provided in all these different cases. They two weeks later wrote back and said, thanks for the additional information, you're right, we've looked at it, it is covered and we'll authorize immediately with Fred Hutchinson.

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

The insurance companies have taken the position that without regard to bad faith, without regard to wrongful denial of benefits there is no remedy because it's an ERISA plan. The courts have all said this horrible tragedy, needless loss of life, but it's not up to us, it's up to Congress, Congress has to change this.

I guess it's my -- my thought is a patients' bill of rights is important. Even if we can't get the ERISA block taken away, if we just had reasonable and effective notice of what your rights are -- if in September of '91 my sister would have know that she had rights to go into federal court and demand the kind of policy that 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 years after she was dead. They just -- they wrote a little simple letter saying it's not covered, it's experimental, send us information in Ohio. And, like you said, a person who's fighting for their life, and has a brand new baby, they're not out gathering legal information to send off to their insurance carrier in Ohio hoping that they'll get a quick turnaround. It's just doesn't happen.

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

MS. ANDERSON: Oh, definitely not. This happens every day. I see denials on an ongoing basis. The majority of the observations that we request are denied -- initially denied. You call, you give the information that -- the patient's name, subscriber number, all the little details -- and that's all they want. And then they 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 them a little more detailed information -- whatever they'll take. But they 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 that level you get somebody who has a medical background, maybe utilization review now. Up to then, you're just dealing with clerks. So you get to utilization review, but you've already gotten two or three denials, so the odds of getting an approval are very slim. Sometimes we go as far as sending book chapters from medical books to say 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 as this. A 12 year old boy came in to see one of our doctors and had a bone lesion. It was cancer. The doctor said he's an excellent candidate for a -- (inaudible) -- procedure. Well, the insurance company said, oh, no, our only approved treatment plan would be an amputation. So we went through the denial process, the whole way to the medical director, got the father involved -- the insurance was through his employer -- got the employer involved. It took us almost four months to get an authorization. But with that, the insurance company would finally say they would authorize the procedure, but they would only pay whatever the amputation would have cost.

So the boy had the procedure done. A few months later he came back with some additional pain, ran him through another staging process and found that he had a recurrence, and he did have to have his leg amputated. But if he would have had this done four months before, he would be out there running and playing today. But now he's dealing with a prothesis -- it was an above-the-knee amputation.

Looking at -- once you get an authorization, then you get the rejection once you submit the claim. We had an authorization for a lady who had a cancerous tumor removed. There was some -- it was an outpatient procedure approved by the insurance company. She had some complications in the operating room, and the doctor anticipated that -- that's why we requested inpatient, but they would only approve outpatient. They admitted her into the hospital. Once they admitted her, the insurance company threw out the outpatient authorization and now they're denying her entire claim, saying we didn't have pre-certification for an inpatient authorization.

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

So you fight for the patients. You advise the patients to 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 I think we need this bill of rights so that the appeal processes have to be more timely, that patients who are seeing an oncologist can see them when they have a problem, not go back to your primary care, wait for another referral, and then make the appointment. They need to see specialists, whether it's an oncologist or any kind of a specialist. They're having an ongoing problem, they need to see that doctor. They don't need to wait for this referral process or the authorization to get that care. Patients need to be assured that the care that they get is what's dictated by their physician and themselves, not by somebody sitting in a boardroom making these decisions -- never seeing a patient, never an exam. How do they know what's best for that patient?

I think that -- being with the Center for Patient Advocacy, I've learned that speaking out and telling the press, Congress, whoever, that these are the things that we need and that somebody has to hear our story, whether it's the patient, whether it's the health care provider, somebody has to hear it and somebody has 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 work together to do this.

THE PRESIDENT: I honestly believe that -- I don't see how -- 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 ever personally 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 things that we have proposed, that the insurers have been so resistent to in our bill, is an appeals process -- some way of enforcing the substantive 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 so she saved her life, which demonstrates that medical care delayed might as well be denied. I mean, delayed medical care can be a death sentence, pure and simple. And maybe you save money that way if you'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 very brave and moving statements today have made an utterly overwhelming case that, yes, we need very clear substantive rights and disclosure, as Mick said, in the law, but you've got to have some way of enforcing this because -- look, I deal with this all the time in other less tragic contracts. We have trade disputes with other countries. They know that if we're right and they're wrong and they can drag it out until kingdom come, it doesn't matter if we win. And I can give you lots of other examples.

I'm a lawyer -- from the time I was in law school we were taught that justice delayed is justice denied. And we spend literally -- the legal profession spends years and years and years of time trying to figure out how to expedite processes without doing injustice to either side. This is a clear case of that principle where the stakes are a heck of a lot higher than they are in virtually 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 from the responsibility to pass this bill.

Nancy, would you like to say anything?

DR. DICKEY: Mr. President, you said it wasn't political, but, unfortunately, the solution appears to be political. We have the ability in this country, as we've heard, to deliver extraordinarily high-quality care, but the delivery system in some cases gets out of balance as we try to balance the costs and science of what we can do. And too often today, bean counters, accountants, or clerks are the ones who insert themselves into the decision-making, as we've heard too poignantly.

State legislators and governors in over 25 states have attempted 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've passed 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 were quoted as saying, we need to have a legislative solution, and so it is a political issue and we need to call our congressmen to hear these 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 to establish the bill of rights. We started asking about patients' protections back in the 103rd Congress; it's now the 105th Congress and we're still asking. We appreciate your leadership, your willingness to bring the issues today to the American public, and we look forward to working with you to support the bill of rights in its entirety -- the appeals, the prompt appeals, the ability to hold people responsible for decisions that they make.

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

Now, your daughter is not the only one that slips the noose; we can all tell stories about the aggressive, feisty physician or patient who fights the system. But somehow it doesn't seem like we should have to teach our young physicians how to argue, how to fight, in order for patients to get the care that they need. And yet, that's what they spend their time doing today -- trying to justify their decision, trying to force the system to move more successfully.

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

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

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

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

Secondly, we must not only have a fair process, as Carol was 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 we talk about speeding up the process.

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

SECRETARY SHALALA: Mr. President, there's a lot of discussion around about Americans wanting government out of their business. I think this is one place where the citizens of our country, the average citizen, would like a little government to make the playing field even.

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

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

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

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

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

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

Q: I think that if you call for an authorization and if it's something that the clerk can't give, I think immediately it should be passed up. I don't think that a denial just has to be given. I think if she can't give the authorization -- he or she -- that at that point it needs to automatically be raised up to the level where there's somebody with medical knowledge. Sometimes you get an LPN, and LPNs are great -- I mean, they're wonderful assistants in a physician's office -- but again, they don't have the knowledge that maybe a working nurse did, or a doctor that could make that 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've never been able to get a physician who is in the same field as the authorization we're requesting. We had an orthopedic patient who we had a peer review by a dermatologist. I mean, he denied it, but what did he know about orthopedics?

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

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

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

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

Now, one of the things that I find that works for me is I demand some responsibility. When I call and the company says, I'm sorry, the patient can't stay in the hospital, and I'll say, I need your name -- I usually get a first name -- I'll say, no, no, I need an I.D. or a last name. Usually the question is, why, and I say because I'm going to put it down here in may chart so that if the patient and I end up in court later on, you can come with me. You know, I don't have near as much trouble talking to a doctor after I'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 employer and request a different coverage because I don't like those rules, I want a different kind of rules. But as long as the rules are under the table and hidden, then no one knows how to play the game, and we inevitably have delay of games that hurt people.

THE PRESIDENT: It looks to me like, too, there ought to be very, very clear rules whenever a doctor certifies that the condition is life-threatening. They ought to -- I think they ought to 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 for reconsideration, and then you ought to have your remedy kick in so you can get -- the whole thing will be over. And I think the court should give whatever -- however the remedies work -- it depends on whether our bill passes as it is, but that ought to be resolved in a limited amount of time.

I mean, they are -- when my mother got sick and was considered for various kinds of treatment, most of which she turned down because she thought she was too old and didn't want to bump anybody else out of it, but I really, just by sort of filling my head with all of this, I became much more sensitive about the time. I mean, to a lot of these people, the difference in 48 hours is an eternity about whether a given procedure will work or not -- and you're just out there fiddling around. I mean, it's just -- it's absolutely inexcusable.

And a lot of these people -- like when you ask them for their name -- a lot of these people are following the path of least resistance. They're doing what they think will please the people for whom 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 people that cut them a check every two weeks. And we've got to change that.

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

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

Doctor?

Q I agree with that. I think doing the right thing in a timely fashion not only is good from a human point of view, it relieves the issues of trust, the uncertainty of time when patients are 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 a matter of minutes using sparse tests -- where someone of less experience just can't do it. And it's more expensive and it's more burdensome to the patient.

I mean, going to the physician when your life is threatened and going to your insurance company should be to go to friends who are going to help relieve you of the burden of your uncertainty of your life and your well-being. And instead we have a situation where it becomes another problem to be endured. Now that's just wrong. If I tried to do that in my practice, issues of informed consent, I have to tell patients about what's happening to them. Why would it be different for an insurance plan? If patients don't like what the recommendations are, they have recourse to go see someone else. 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 talking about here.

MR. FLEMMING: Mr. President, one of the things that Secretary Herman pointed out, which comes into play even more now, is that the ERISA laws which govern the vast majority of health plans were written in 1974. And medical technology has gone so far so fast that, for instance, to have a meaningful appeal period under ERISA today, where you have cancer treatments that need to be done today -- or like you said, within 48 hours or at least a week -- and ERISA says that insurance carrier has 90 days to respond, and they take that 90 days, especially in cases like my sister's, they take that 90 days-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, while they know from day one that if they take even the 90 days, the chances that they'll ever have to pay for that particular bone marrow treatment have gone to almost zero.

And so you have to have, I think, a revised appeal period and response period to deal with the modern technology of medicine. And then you also really have to have, like you say, you know, rights without a remedy. And I think, frankly, that the insurance industry, just like every other industry, responds pretty quickly to exposure, if you will, from not just -- you know, a negligent decision is one thing, but if you make a bad faith decision, they respond very quickly to the concept of having exposure for making a bad faith decision, especially in a life and death situation.

DR. KIZER: Mr. President, I endorse that. You pointed out that at VA we see 3 million patients a year. Well, we're your largest 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 calculated in terms of days, not months. To not have that kind of time line at work is to fail to acknowledge I think the central theme of so much of what has been said around this table, and that is the decisions in health care that are made in a patient's case are to the patient and the family not merely decisions of organizations doing their business, but decisions that may be the most important in that patient'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, now that we are going to have an external appeals process that oversees our internal appeals process, is to acknowledge that no human organization can really successfully improve itself without some outside 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, all 173 of them. Those are the kinds of things you have envisioned in the patients' bill of rights and it's what you have us doing for veterans 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 federal plan has these rights. Why shouldn't everyone in a private plan have them? And that requires the Congress to act.

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

The advocate issue is a great one. We need ombudsmen to explain what these health care plans are about. How can you make wise decisions if you don't even understand what your health care plan includes. And the patient bill of rights is instrumental in making sure that you have information, and that empowers are patients, and will empower our providers to work with our patients.

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

We appreciate everything you've done to help put this in the center of the field, the highlight. We're looking for bipartisan support, because although the solution may be political, these are apolitical issues. And we look forward to working with you. We thank you very much for coming here and putting these issues on the table for the American public, and look forward to working with you to make sure that before this Congress closes we can say this has been a success for our patients.

THE PRESIDENT: I want to thank all of you. This has been very helpful to me and to members of our administration and I hope 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 and to Mick and to Dr. Evjy and to Carol for relating some painful personal experiences.

And I would just leave you with this thought: For me, this is about even more than health care; this is about how people feel about America. I mean, for six years I've worked hard to make this country work again, to give people the sense that they can be really not only proud of America, but they can feel that it is a fair and decent place where everybody has a chance. And that obviously has 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 safe neighborhood.

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

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