Remarks in a Roundtable Discussion on the Patients' Bill of Rights

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 we very badly need a Patients' Bill of Rights.

More than 160 million Americans are in managed care today. At best, the system can drive health care costs down and make health care more affordable and accessible for more Americans. We should all be encouraged—representing that best—that a coalition of 25 progressive HMO's this week endorsed the Patients' Bill of Rights. But as we will hear in a few minutes, at its worst, 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 simple 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 Patients' 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 Patients' 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 would just start—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.

[Mary Kuhl related her experience with a health maintenance organization (HMO) after her husband's heart attack, when the HMO denied rehabilitation services and diagnostic procedures because the Kuhls were not certified. Ms. Kuhl described her frustration with HMO rules of procedure which limited her husband's ability to get the care he needed and would not allow the recommended time in a hospital.]

The President. You mean the HMO would only let him stay 2 days?

Ms. Kuhl. Yes, they would only let him stay 2 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 HMO's 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. So that's my story, Mr. President.

The President. Well, if we had this kind of legislation, you would have had that right.

Ms. Kuhl. 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, ERISA——

The President. But ours would take care of that; our legislation would take care of the legal bar to your remedy.

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

The President. Thank you.

Mr. Garvey.

[David Garvey told the story of his wife, who was diagnosed with aplastic anemia while on vacation in Hawaii in 1994. Doctors in Hawaii recommended a bone marrow transplant and determined that Mrs. Garvey's condition made it dangerous for her to travel home to Chicago for treatment. Her HMO physician in Chicago agreed with treating her in Hawaii, but was immediately taken off her case, and the new doctor, without examination or consultation with doctors on the case, insisted she return to Chicago for treatment or her bills would not be covered. Left without an immune system, Mrs. Garvey suffered a stroke on her flight home, developed a fungal infection which kept her too unstable for bone marrow transplants, and died 9 days later. Mr. Garvey described the devastation his wife's death had caused his family, saying that HMO's were more interested in money than human life.]

The President. If this legislation were to pass, one of the things that would happen—this would also have been relevant to your situation in St. Louis—is that people would be eligible for outof-the-network—the so-called out-of-the-network treatment if it was indicated as being in the best interests of the patient, and also always held to the same 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. Yes. It's a shame, but that's what happened.

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.

[Medical oncologist Jack Evjy said that when his daughter discovered a lump in her breast, she had to persuade her managed care provider to properly diagnose the problem with a biopsy, eventually had to change doctors to get anything done, and ultimately lost both breasts. Dr. Evjy also told the story of a patient who suffered from lymphedema, saying that when he recommended that the patient see specialists, the patient's health care provider took months to give permission for the treatment. Dr. Evjy then expressed his support for a Patients' Bill of Rights.]

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 David 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——

Dr. Evjy. She's feisty——

The President. 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.

Dr. Evjy. 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 well-being. It's just not right.

The President. Well, thank you for sticking up for your folks.

Dr. Evjy. Thank you.

The President. 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 told a similar story of a young woman who discovered lumps in her breast but was told by her provider that malignancy in someone her age was unlikely. By the time her symptoms required her to see a specialist, her condition had advanced significantly. Ms. Malone said as a nurse she saw this kind of unnecessary suffering all the time, and she expressed her support for a Patients' Bill of Rights and thanked the President for his work on the issue.]

The President. Thank you.

Mr. Fleming, tell us your story.

[Mick Fleming told the story of his younger sister, who also discovered a lump in her breast. After a mastectomy, cancer was discovered in her lungs, and specialists explained that there was only a 2- to 3-month window for a procedure where high-dose chemotherapy and a bone marrow transplant could save her life. Mr. Fleming said preauthorization from her insurance carrier or $250,000 in cash was required before treatment could begin. Her insurance carrier did not preauthorize and, after a 4-month delay, ruled that the procedure was experimental and therefore denied. Her family hired attorneys to challenge the decision, and the insurance carrier then authorized the treatment. However, the cancer had by then spread to her brain, and she died 10 months later. Mr. Fleming said congressional action was necessary to change the system, and he expressed support for a Patients' Bill of Rights.]

The President. Carol Anderson is a billing manager in an oncologist's 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 agreed, saying denials such as the ones in the participants' experiences were common and that appeals were not effective. She offered the example of a 12-year-old boy who developed a cancerous bone lesion on his leg. The doctor recommended a treatment which would have saved the boy's leg, but the insurance carrier would only authorize amputation. After a 4-month appeal of the treatment dispute, the leg had to be amputated. Ms. Anderson said most hospitals operated in debt and required money from patients up front, and that problems with getting authorization from carriers hindered proper care. She expressed her hope that political partisanship would not delay progress on resolving such problems.]

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 resistant 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. Nancy W. Dickey, president, American Medical Association, said the solution indeed appeared to be political. She stated that the health care delivery system was too often hampered by accountants and clerks affecting the decisionmaking, and State laws that attempted to strike a balance between proper care and delivery processes were instantly appealed in court. Dr. Dickey thanked the President for his leadership on the issue, noting that the medical community had been waiting for legislative action since the 103d Congress, and said she supported the Patients' Bill of Rights.]

The President. Secretary Shalala and Secretary Herman cochaired 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 of Labor Alexis M. Herman emphasized the need to strengthen the Employee Retirement Income Security Act of 1974 (ERISA) in three areas: the relationship between right and remedy, faster and fairer appeals, and protections for persons wrongly denied care. Secretary of Health and Human Services Donna E. Shalala noted that while there was a lot of discussion about Americans wanting less Government, this was an issue where they would like Government attention. She said a Patients' Bill of Rights was necessary for people to get the medical attention they deserve.]

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 advantage 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—[at this point, the President snapped his fingers]—so nobody ever 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 HMO's 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?

[Ms. Anderson answered that if a clerk could not give authorization for a procedure, the request should be passed up to a more professional level immediately and addressed in a timely fashion rather than denied.]

The President. Dr. Dickey, has the AMA spoken to this directly?

[Dr. Dickey said the AMA recommended more straightforward processes with fewer stages to pass through, to let patients know their options sooner, and establishment of a timeline on authorization. She also noted the effectiveness of forcing providers to take responsibility by taking names for the possibility of future legal action.]

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 2 weeks. And we've got to change that.

[Secretary Shalala suggested that the Patients' Bill of Rights would actually save money because it would reduce the cases of wrongly denied coverage for symptoms of a disease at an early, perhaps curable, and less expensive stage. Dr. Evjy agreed, and noted that the insurance system had a responsibility to provide patients with accurate options, much the way doctors must explain conditions to their patients. Mr. Fleming noted that the ERISA laws governing the majority of health plans were outdated and out of pace with medical technology and that insurance carriers must also keep pace with modernity. Secretary of Veterans Affairs Togo D. West, Jr., endorsed Mr. Fleming's point and stressed the importance of definite timelines in providing care. Secretary Shalala said congressional action was necessary to give the public the rights the President gave to those in Federal plans. A participant noted that the Patients' Bill of Rights would be instrumental in ensuring information to empower patients and providers to work collectively. Dr. Dickey agreed and said she looked forward to working with the President to enact such legislation.]

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 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 6 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 stories 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.