Dr. Bove. I think all three organizations or four organizations would agree, Congressman Waxman, that when there is a clear cut and well-established and universally accepted public health need for transmission of donor information of any kind to the appropriate public health source, that we would agree with that kind of record release.

But that is considerably different from a willy-nilly or a loose attitude to the release of the same kind of information to other individuals, to groups, to societies, to clubs or to make such information easily available in the case of legal action or proposed legal action or situations where people are just thinking about legal action.

We all support the sharing of appropriate public health-related information with properly constituted public health agencies, but only when those agencies have established the need, have appropriate legislation, and when it is clear that that is in the public good. Mr. WAXMAN. I am interested in that statement, because certainly we would want to have the public health agencies be able to do their job, and in the case of AIDS or any other sexually transmitted disease, or any communicable disease, to be able to limit the spread of that disease, so when we talk about protecting confidentiality of the donor blood, we are not talking about limiting the ability of the public health people to do their job.

Dr. Bove. Yes, sir; I think we all would agree with that.

Mr. WAXMAN. Suppose someone came in and never thought of themselves as being at risk for AIDS, and there is a positive test showing they carry that antibody. As I understand where we are now, only 10 percent of those people who will get that positive reading on the exam will be likely to come down with the disease. Is that your understanding of where we are on this, Dr. Bove?

Dr. BOVE. That is a tough question to answer. We are very early in the epidemiologic study of the entire disease AIDS, and certainly extremely early in the knowledge about what happens to people who are in low-risk groups essentially and have antibodies. Some of the information will be made available 2 days from now when we go to the FDA-NIH hearing, but it is going to take years before I would be in a position to answer that question.

The best information we have from high-risk populations is that a small proportion-but it is a small proportion-of people who have antibodies have come down with AIDS or AIDS-related conditions, at least over 2 to 5 years, but what that means for individuals who are in low-risk populations or individuals who are in high-risk or low-risk populations for 5 to 10 or 10 to 20 years I don't think anybody is willing to say.

Mr. WAXMAN. Are we concerned that somebody who comes in and never suspects that they have any reason to have an AIDS antibody, that once they discover that AIDS antibody, they are not likely to get the disease, they may well be in the category of a false positive, but that they don't want their employers or others, bankers or whatever, to know that there was a positive result on this test, so that they have their privacy infringed and maybe lose their job and social standing for no purpose at all for society?

Dr. Bove. You have summarized it beautifully. We are terribly concerned about that. There is, to the best of my medical knowl

edge, and to the best epidemiologic information we have now, no reason why their bankers or their employers should know about this currently.

Mr. WAXMAN. There is no public health purpose to be served?

Dr. BOVE. Certainly not by telling bankers, insurance companies or people like that. In fact, sir, I think the public health agencies themselves are treading, and appropriately, very carefully into this area, because they have not decided-it is too early to knowwhether there will be any public health value to be gained by sharing this information even with public health groups, States and territorial.

Mr. WAXMAN. Why do you say that? Why is there no value in doing that?

Dr. Bove. Because we don't really know what a public health agency could do about it, particularly in low-risk groups.

Mr. WAXMAN. Of course, the individual would be informed that they may or may not come down with AIDS, and have to live with that apprehension and anxiety maybe for the rest of their lives. That is something we still don't know yet what to do with.

Dr. Bove. Yes, but that is not unique in the society we live in, sir. There are a lot of things, agent orange, chemical dumps and so forth. The American population is having to face that kind of information in lots of areas, and, yes, there will be individuals who will have to face that information about the antibody HTLV-III. We hope in a few years we will be able to counsel them better, tell them more about what that means. We just don't have that information now.

Mr. WAXMAN. Is it your concern, running blood banks, that if people thought that by some fluke or incredible set of circumstances that they have some disease they never dreamed they have, one they would like to know about and act upon it but they don't want the other people to know about it, and if they thought that going in to give blood could open them up to everybody knowing their business that they would just stay away from the blood banks? Mr. Reilly, is that what is at stake?

Mr. REILLY. That is a serious threat and I think that is what all of us are concerned about. Certainly in the plasma industry we currently have a system of informing the donor about the test results. And as a part of our informing the donor, the donor is advised of all of the implications and use of the test and the use of the information, so in terms of the confidentiality we have been talking about for the past few minutes we think that is adequately dealt with.

The real issue from our perspective is that, as in the Rasmussen case in Florida, if a donor record can be the subject of subpoena and made public most donors are going to find that a very undesirable set of circumstances, and it doesn't really make much difference whether the donor is a voluntary donor or a compensated donor. The prospects that his personal life and his personal habits may be the subject of intimate discussion with a variety of people is going to be a sufficient deterrent, in our opinion, to seriously affect the supply.

Mr. WAXMAN. I talked about something being discovered in the blood that the donor didn't suspect, but Mr. Schmitt, you raised an

other point, and that is the information you request of everyone who is about to donate blood, some of which is just personal information that you need to know in order to assess whether this individual may be at risk to have something that might be transmitted. Would you tell us what sort of medical information your groups request from blood donors that you think also ought to be covered by this confidentiality?

Mr. SCHMITT. During the process of donor screening, we have a series of 12 or 15 questions regarding the donor's medical history which we ask, and we would think that any information given in response to any of those questions should be covered by these confidentiality provisions, as well as the results of any test that we might subsequently do after the donation.

Mr. WAXMAN. What kinds of questions? What do you ask?

Mr. SCHMITT. There are questions regarding whether or notanything that would indicate any possible exposure on the part of the donor to any kind of potential transmissible disease, whether it be AIDS or hepatitis, malaria, any of these associated kinds of things. That is a standard uniform set of questions that are asked of all donors, and which has been a standard practice predating the issue surrounding AIDS.

Mr. WAXMAN. You have had a longstanding privilege in the law, the doctor-patient privilege, where a doctor cannot be required without the consent of the patient to divulge information that was given to that doctor in confidence. The reason for that privilege is because we want to be able to encourage patients to talk to their doctors, the same as the lawyer-client privilege. We want to have full communication between the client and the attorney. Are you suggesting that what we are really doing here when we talk about legislation is making clear that there will be the same kind of privilege between blood banks standing in the place of a doctor and the donor standing in the place of a patient? Dr. Bove.

Dr. Bove. Yes, I think that is correct, Congressman.

Could I comment about two things related to what you asked Mr. Schmitt. I think there are other areas that you and I may not even perceive of as being important that we would still like to protect. For example, one of the questions we ask a donor is have you been out of the country, and if so, where. I don't think it is any of the public's business, and they should have no right to know where a blood donor travels, for example.

Second, I think perhaps many of you recall not too long ago there was a great deal of press coverage about an individual, I think it was in Iowa, who had been HLA typed, and who had the only bone marrow available for a young child with leukemia and had made a decision that he did not want to give bone marrow. And there was a subpoena and attempt to get that individual named so that the parents could confront him and, personally, try to force him. That is a piece of information that has nothing to do with infectious illness or transmissible disease, and yet a piece of information that we think should be kept confidential, and the donor giving blood should have a right to make those decisions for himself or herself without the pressure of other people, of the press, the public, the law or well-meaning concerned parents or friends.

Mr. WAXMAN. A very good point. Is there anything further that either of you wish to add? I appreciate your testimony. I think you have done an excellent job in the outlining to us of the problem and the need for legislation to make sure that we can protect the confidentiality and the rights of those people who would volunteer to participate in donating blood, which we want to encourage from most of the people in our society.

That concludes our hearing for today. We therefore stand adjourned.

[Whereupon at 11:05 a.m., the committee adjourned.]

COST OF AIDS CARE AND WHO IS GOING TO

PAY

FRIDAY, NOVEMBER 1, 1985

HOUSE OF REPRESENTATIVES,

COMMITTEE ON ENERGY AND COMMERCE,

SUBCOMMITTEE ON HEALTH AND THE ENVIRONMENT,

Washington, DC.

The subcommittee met, pursuant to call, at 10 a.m., in room 2123, Rayburn House Office Building, Hon. Henry A. Waxman (chairman) presiding.

Mr. WAXMAN. The meeting of the subcommittee will please come to order.

Over the past 31⁄2 years, this subcommittee has held six hearings on AIDS and public health and biomedical research. At the time of our first hearing, there were 300 cases. Since that time, over 14,000 more have been reported.

As 95 percent of America knows, this is a serious epidemic. As most Americans have not yet realized, however, this epidemic also means a large, new burden on the health care system of America. Estimates of the cost per case-from diagnosis to death-range from $19,000 in one State system, to $140,000 in another survey, to almost $200,000, according to the military hospitals.

This is a cost that will not go away. Even if a preventive vaccine were discovered this morning, at least 45,000 more Americans would develop AIDS from infections they already have.

Today's hearing is the first in a series on the cost of AIDS and who is going to pay it.

The American health care system is already strained by pressures ranging from the growing number of uninsured people to the declining adequacy of Federal programs. Many public hospitalswho are left with the responsibility of caring for all those without insurance-may be unable to bear the responsibility of increasing AIDS cases. Medicaid benefits, already impossibly low in many States, are going to be cut further under budget plans now before the Congress.

In addition to these pressures on public programs, difficulties have arisen among private payors. Fears of discrimination in insurance have been widespread. Although the HTLV-3 blood antibody test has been approved only for screening transfusion products, it has come into wide use in insurance. Employers concerned about medical bills have begun to discharge persons with AIDS who are still able to work.