Organ Selling is a website dedicated to ending the organ shortage and the attendant needless suffering and death each year of thousands of prospective organ transplant patients simply by allowing monetary compensation for cadaveric organs, which will greatly increase the supply.
Our Representatives in the U.S. House managed to find one person willing to speak in favor of organ selling, and in opposition to their proposed ban. They picked a rather unsympathetic character - one who'd become infamous for offering to fly South Americans to the U.S. for a 2-week vacation, in return for which they'd leave the country with one less kidney! It was like having Dr. Frankenstein testify, and they kept asking him about that monster of his. But, he made many good points, despite their attempts to embarrass him - especially Al Gore, who drafted the legislation. Had they really been interested in having an impartial hearing, they could have found many other, more serious, philosophers of law and medical ethics.
NOTE TO THE READER Because the dialogue is so pointed and fascinating, I've included the entire text here. (Dr. Jacobs starts off by talking about one of his opponents "sitting on his butt." You gotta love this guy!) (I scanned it and used a good optical character reader. It's not available elsewhere on the web, to my knowledge.) The person who transcribed the testimony didn't do a perfect job. I've made some minor changes in grammar where the transcriber obviously messed up, but I've left some imperfect grammar where it was a tougher fix, because people don't always speak perfectly correctly, and I didn't want to be accused of putting words in anyone's mouth.
Statement of Barry Jacobs, M.D., Medical Director, International
Kidney Exchange, Ltd.
The date of this particular hearing was Monday, October 17, 1983. Prior to giving his testimony, Dr. Jacobs had to sit through many long hours of talk from Al Gore (Tennessee), Henry Waxman (California), Edward Brandt, Jr., M.D. (Assistant Secretary for Health, Office of Assistant Secretary for Health, Department of Health and Human Services), Carolyn Davis, Ph.D. (Administrator, Health Care Financing Administrations - HCFA), their questioning by House members Gore, Waxman, Howard C. Nielson (Utah), all followed by a string of experts in various parts of the field, all but one of whom favored the ban on organ selling, the other one being neutral. Favoring the ban were Oscar Salvatierra, M.D., President, American Society of Transplant Surgeons: "We have all been appalled, as have you, Mr. Gore and others, with the recent proposals dealing with the sale of human organs. We want to state categorically our opposition to such schemes and our intention to discourage such activities. We strongly support the provisions in this bill which make it unlawful to engage in plans for the sale of human organs." [p.189]; Amy S. Peele, President, North American Transplant Coordinators Organization: "NATCO strongly agrees with title III of the bill prohibiting the sale of human organs and the penalties for violating this act." [p.202]; Charles Carter, M.D., Vice President, Southeastern Organ Procurement Foundation: "Title III, section 301 making the sale of human body parts illegal is most important and should be passed as quickly as possible, either as part of this bill or a separate one." [p. 210]; and Keith Johnson, M.D., President, Association of Independent Organ Procurement Agencies: from his written statement - "A mechanism is needed to discourage those individuals and organizations whose primary motivation is entrepreneurial from becoming involved with organ retrieval. The realization of profit from the retrieval and sharing of donated organs and tissues is morally indefensible and practically could very rapidly turn off public acceptance of the concept of organ donation. The key word in organ retrieval is truly 'donation'." [p.224]. Only Thomas E. Starzl, M.D., Ph.D., world famous, pioneering liver transplant surgeon, remained silent on the issue of organ selling.Mr. WAXMAN. Our next witness is Dr. Barry Jacobs, the medical director of the International Kidney Exchange. He is here today to discuss his proposals to increase the number of kidneys available for transplantation.
STATEMENT OF BARRY JACOBS, M.D., MEDICAL DIRECTOR,
INTERNATIONAL KIDNEY EXCHANGE, LTD.
Dr. JACOBS. You have my position paper. Let me just get right to the point of what we are here about.Everything I heard today from Dr. Brandt, sitting on his butt, from everyone else here, talking about need - there is no question about the need. There is no question about the problem.
A fancier computer is not going to solve the problem. With 22,000 brain dead people where organs could have been removed last year, only 1 out of 10 had them. A fancier computer may save a few percentage on wasting of organs. Maybe it will improve the kidney transplant rate. Right now with cyclosporine, a kidney will last 80 percent or more over 5 years.
The technology is here. Congressman Gore and myself have been on television, various programs. We must have generated about $50 million worth of free publicity. Ithink the test will be, look over the next 6 months and see what increase in altruism - as Dr. Salvatierra said, we are in the altruistic business here - let's see what that $50 million in free publicity has done in altruism of brain dead people's families willing to dedicate more organs. I don't think it will make a dent in the budget.
There are 70,000 Americans out there who could have transplants and only 5,000 something or other last year had it.
They talk about the risk to the donor and they talk about altruism. You know about 500 or 600 or more transplants last year came from healthy people---relatives, fathers, mothers, and brothers. The chance of having a stranger's kidney match your son's or your daughter's kidney is greater than you matching your own family's kidneys because if the pool is, large enough, your genes and your wife's genes mix into your child. So the chance of getting a stranger's kidney, a cadaver's or living stranger's is irrelevant.
It is better that the pool is large enough so that is relevant. I agree with Dr. Salvatierra, the donors have to be screened, whether it be cadaver donors, where you only have a short period of time to do the blood testing, a live person, they have to be protected in the future or followed up and is advised and fully informed. They seem to imply that if someone is going to sell a kidney they are going to walk into a room, give up the kidney and be lost forever.
You have to talk to the family doctor or the person, the surgeon who is going to operate, the hospital is getting the informed consent as well; the psychiatrist who has to evaluate the person before they give you a kidney for money or love. There is a whole bunch of safeguards in the system now. The problem is nothing has been done, effectively done to increase the number of organs.
What I am proposing is simply a monetary program. It is a two-phased monetary program. Where people fully informed, consenting adults, could give up a kidney if they wanted to, and more importantly, and the major thing is for the Government to offer the incentive to people to sign up while they are healthy.
Most States have the place where you can sign up on the drivers license, or they can register with the post office like a draft. Give some people money incentives to sign up while they are alive, should their organ be used if they are. brain dead and if their organs could be harvested or used for someone to live, whether heart, lung, or kidney, give them the monetary incentive to sign up so that there will be made known in advance while they are alive, so when and if they die, that their organs, their name will be in the computer, the hospitals all over the country will have the printout sheets they can check, is this person registered, is there a desire, the desire while alive was to give up the organ to benefit someone who could use them.
What is the incentive? Like an insurance company, the Government can give $10 or $20,000, whatever it takes to get a massive number of people to sign up and then solve the entire transplant program. The computer-you heard them, they match all over the country now. They are not one organization in Richmond, another one in California, the computers talk to each other every day. Maybe if the Government steps in it will improve the matching, speed it up a little bit.
That is not going to solve the problem. The problem is the availability of organs that don't exist and having more dedicated people like this woman sitting next to me, more dedicated people like her going out into the community and knocking on doors and working in emergency rooms and that may improve a little bit.
We have done 50 million dollars' worth of free publicity last week. I doubt if it has made a dent in the problem. The more publicity, more TV commercials, more people knocking on doors is not going to give the personal incentive to give up the organ. It is the monetary incentive that the Government can say we are going to give you a $20,000 insurance policy that if you die and if we can harvest your organs-which means they are brain dead on the respirator---if they can harvest the organs, then your family will get a burial payment, payments for your family to go on.
That is the major problem. It is not fancier computers, not the technology. The technology is here, the fancy computers already talk to each other. It is getting availability of organs that don 't exist. And whether it be from healthy living people, who want to give it up now-we gave a whole bunch of letters-we have one from a lawyer in Washington, D.C. He wants to donate free, and complete our form. He wants to do it anyway. People want to donate for free. People want to donate for money. They don't know where to even go. There is no incentive for them to give up an organ.
When a person is lying brain dead, I can't conceive of them arguing about their little daughter's kidney or liver or how much they are going to get for it. It is not going to interfere with the existing people waiting for organs. They are waiting for organs that don't exist in the cadaver pool. If you can get more organs available, then you can take them off the list, let them have an organ, and more people then will move up the list and just improve the whole problem and take care of it.
Mr. WAXMAN. So it is your position that the altruism is not enough. People are not going to want to contribute their organs to save the life of another should they find themselves brain dead, people are not going to want to contribute?
Dr.JACOBS. If they find themselves brain dead they can't make a decision.
Mr.WAXMAN. They make it in advance. One of the purposes of the whole legislation and the organization that hopes to carry out this purpose of this legislation is to encourage physicians to tell their patients that they ought to be aware of organ donation, or the next of kin ought to know if a relative is brain dead that an organ can be contributed.
Dr.JACOBS. These organizations have been out there.
Mr.WAXMAN. I want to finish my statement, then I will let you finish yours. The whole purpose of this bill is to notify people and inform them of all the people waiting, and that they, while they don't think about it now, may find themselves in that circumstance, and to encourage them to discuss with their relatives or physicians the fact that they may well want to contribute an organ. You think that is not going to be sufficient and we have to have a system of buying and selling organs and go to people who want the money in order to get them?
Dr.JACOBS. Not buy it and sell it. Make equitable distribution. Offer the incentive, let the Government run it, offer the monetary incentive for people to sign up.
Mr.WAXMAN. Do you think money is the only incentive that will motivate people?
Dr.JACOBS. It is not the only incentive but it is the only one that is going to make a difference. When you have 22,000 brain-dead people, and 2,200 of them, 10 percent of them are, through the families and coordinators, begging them to give up the organs, and only 10 percent give up the organs. Sometimes they could have given them up, the family has to think about it, and they end up with pneumonia, infection sets in, you can't put an infected organ into somebody, you will kill the recipient. So give them the incentive now. Why would anybody in their right mind -- go around the country now -- give up an organ? You could have signed up on the drivers license for years in many States. It is pathetic but almost nobody signs up. We got all the publicity now, cameras and everything. It hasn't made a dent in the situation. For every $1,000 the Government spends in insurance policy for organs, as an incentive to sign up, they will save $14,000 or more on transplantation.
We are spending $2 billion a year for kidney dialysis, keeping 70,000 people alive. Congressman Gore talked about the dehumanization on our machines. To get them off of it, the Government can save money by offering a little insurance policy as the incentive to sign up, as the incentive to sign up so that the pool of potential organs being available will markedly rise and all this begging and pleading will just disappear.
Mr.WAXMAN. For the record, are you involved in a business now involving organs? Are you commercially involved in the commercial sale of organs?
Dr.JACOBS. Let me explain where it is at. We just set up a proposal, and it is just at the initial phase of the proposal. What really happened, I think it is misunderstood what we did. I wrote letters to 7,500 hospitals asking them would they be interested in participating in transplantation doing the transplant operations, or doing the removal of the kidney. That is what we mailed out to 7,500 hospitals to see what response their was.
And about 5 days later, or a week later, I was interviewed by the Washington Post and on television. All we have done is mail out a letter to 7,500 hospitals. Because of the publicity from television, hundreds of donors called in. We xeroxed as many as we could of the applications and letters and gave it to your committee just on Friday, I think it was.
Mr.WAXMAN. Is it your intention to become a middleman, a broker, to charge a fee for contacting a donor and obtaining an organ in order to give it to a donee?
Dr.JACOBS. If we can locate, if a couple of things happen, if we locate the number of hospitals that we would need to participate. If we can do that and the physicians are willing to cooperate in the program, which means all of the doctors involved, if we can do that, and if nothing is done about raising the number of organs available - fancy computers don't do it - then it is our intention to go ahead, not buying and selling organs; setting up a private program independent of the existing program, having healthy people if they want to sell a kidney. That is their decision to make. They can set a price if they want. That is their own business, we have nothing to do with that. And help match make the blood typing information available to the recipients through their doctors, they can decide if they can afford it, is it a good match.
Mr.WAXMAN. How would you be compensated?
Dr.JACOBS. Well, there would be - if the person, the recipient, not the donor, if the recipient could afford, without indigence - there will be a sliding scale brokerage fee that would cover the cost we would incur. Then what would be left from the brokerage fee would be used to advance the cost to those who couldn't afford it so they could purchase a kidney, go back to work, reimburse the fund, which would then have the money available for the next person downstream. I hope the Government can take it over and do it on their own. I don't want to do it. Something has to be done about it.
Mr.WAXMAN. How would you assure that potential donors who are motivated solely by making some money would fully disclose all their medical conditions that might affect the outcome of the surgery?
Dr.JACOBS. First, we have to have their family physician give them - in other words, their doctor, they have had some doctors in the past. Their doctors, or clinics or wherever they get their medical care, has to make the medical records available so they have to sign a consent to release their medical records, which is their right to do as a patient. Release the medical record. They will have to be counseled by their own doctors.
No. 3, they would be evaluated by a psychiatrist to be sure they are making an informed decision and they understand what the risks are, then they have to be counseled by their own doctor with regard to risks. Then when the matches are made up they will be going into a hospital and the surgeons operating in the hospital will be counseling them. It is all elective.
Mr.WAXMAN. Usually people who are indigent, who are doing something to make money, don't have a family physician.
Dr.JACOBS. They all have clinics.
Mr.WAXMAN. You get somebody with a stamp on there that says it is OK, they are fine?
Dr.JACOBS. They have to have gone to some institution in the past for some medical care. Those records will have to be made available. A stranger doesn't come out of the woodwork in this country. Whatever the system is, whether a private physician or a clinic or in the Army, they have been treated in the past. That is No. 1. That is just background. Of course, if you are talking about a cadaver lying on a slab or on a respirator, what information do they know about that person? There is not time to get their medical records.
Mr.WAXMAN. Cadaver donors are the same under either circumstance. I would assume the indigent who came in to get some money would be someone donating a kidney because they can survive with one kidney.
Dr.JACOBS. That is correct.
Mr.WAXMAN. Talking about someone brain damaged because of an accident, I assume there is no way to make much money. It would be a question whether they are willing to pay or their family have already discussed it and made a decision whether they are willing to ---
Dr.JACOBS. I think you are missing something. There are two reasons why you want to know about the past medical history of the donor. One is to protect the donor and the other reason is to protect the recipient. For the protection of the recipient there is more information available with testing in an elective time in the healthy walking person as opposed to the cadaver. For protection of the recipient, a noninfected, not on a respirator, no needles in their body, a noninfected donor has a better kidney, a safer kidney, to a small degree a safer kidney than one lying on a respirator.
With regard to the protection of the donor, they have medical records in the past. They will have seen some physicians in the past. They will have to see other independent physicians in the program that I am proposing. In the program we are proposing, they would have to see a physician, they would have to see a psychiatrist. All the blood tests, kidney X-ray studies to be sure that they are healthy, that they do have two normal functioning kidneys and are psychologically sound and there is no coercion as an inducement.
Mr.WAXMAN. This idea of a commercialization of organs is based on a premise that people, if asked, would not voluntarily donate an organ and make this program succeed where we match donees and donors in order to save lives. Is that a correct statement?
Dr.JACOBS. It is correct because it hasn't worked for years. They talk about need. No one denies the need. No one denies that the Government ought to fund. It is not experimental anymore. I heard Dr. Brandt this morning talk about how do you know the criteria for the patients and alcoholic hepatitis? That is a medical decision.
Mr.WAXMAN. You think that no matter what other programs we undertake --- to inform people, to set up a computer system, to try to encourage the physicians to talk to patients, and members of the family about donating organs---to encourage people to donate on a voluntary basis, there is not going to be enough of an incentive, and that what we need is to pay people?
Dr.JACOBS. I hope that talking to them, I hope that putting in these coordinators in multiple areas in every State, I hope that would work, but it hasn't worked for years. It has been so dismal a failure, pathetic.
Mr.WAXMAN. You don't think--
Dr.JACOBS. I don't think it will work. I don't think it will work and I think the Government can simply make a reasonable incentive for people to sign up so if their organs could be used when they are dead, the person will have made their will known.
Mr.WAXMAN. I understand.
Dr.JACOBS. Once more, I don't think it will work.
Mr.NIELSON. Excuse me, I wanted to ask a question.
Dr.JACOBS. I don't think it will work. It hasn't worked yet.
Mr.NIELSON. Dr. Jacobs, would you clarify for me---I didn't hear all the testimony, although I have read it. Are you proposing the Government do the buying and selling of these organs, or do you propose it be private enterprise?
Dr.JACOBS. With regard to the monetary incentive to have the person sign up while they are alive, so if they die, if their organs could be used, that they be equitably distributed, I proposed the Government do it. And with regard to the healthy, living people, the National Kidney Foundation---Fortune Magazine quotes their brochure---it is safe for the donor to give it. I think healthy living people, the ones that are healthy, can make a decision to give up an organ.
I think the Government ought to get involved in doing it. If the Government doesn't get involved in doing it, I think the private sector ought to get involved in doing it with the appropriate safeguards we now have in the medical profession.
Mr.NIELSON. Irrespective of whether you like this bill or not, do you think it will help encourage people to donate organs? Do you think it will work in that direction? Will this bill help or hinder that process, yes or no?
Dr.JACOBS. It won't hinder, it will minimally help. The main thrust of the bill, the most important aspect of the bill is recognizing, not the kidney, with regard to the heart and liver that is no longer experimental and making them available for the people. It is not only they need more organs, but it is the one they get can't get the hospital bills paid. You can't go to the hospital until you put down $80,000. It is a fact of life. He can waive his fees but not the university hospital fees.
Mr.NIELSON. How about section 3 of the bill? Witnesses say they are opposed to it, basically that is buying and selling organs. That is what the section deals with.
Dr.JACOBS. It is very simple.
Mr.NIELSON. Are you for that section or are you against it?
Dr.JACOBS. I am against it. Like the Soviet Union, in the Soviet Union they have no transplant problems because the organs belong to the State pocket. It is creating a communistic system on organs. It is saying a healthy consenting adult in the present medical system with all their safeguards we have with the hospital and physicians, can't make their own determination for his own body.
I respect Congressman Gore's ethics and his ethics and morals are fine. To impose his ethics on everybody else, when we came off the Today show, 30 people called, up. Every one of the 30 were in favor of what I was proposing, the right of the individual to make that decision for themselves. The safeguards are out there. The medical profession is the most regulated in the world.
Mr.NIELSON. Do you have an alternative version to section 3. It is a problem. Do you have some way we can amend section 3 to make it acceptable?
Dr. JACOBS. Yes, Sir.
Mr.NIELSON. Would you present it to us?
Dr. JACOBS. Very simply.
Mr.NIELSON. I mean in writing.
Dr. JACOBS. Yes, some safeguards.
Mr.NIELSON. I presume anyone who makes the decision is somehow not in full command of his faculties, is that what you are saying?.
Dr. JACOBS. Not at all. I am suggesting if you want legislation--
Mr.NIELSON. What you are saying is if I make that decision, I have to see a psychiatrist to make sure I am in my right mind to make this decision.
Dr.JACOBS. What I am saying is that a psychiatrist would be the one to determine the adequacies of an informed consent decision if you want to pass legislation.
Mr.NIELSON. Won't that dry up the number who will offer their organs? If they have to go then to see a psychiatrist, won't that dry up--
Dr. JACOBS. No, they won't have to pay for it.
Mr.NIELSON. I don't care who pays it.
Dr. JACOBS. Everyone else is concerned with who is paying it. It won't dry it up at all. There is no stigma. It is simply a safeguard for the patient.
Mr.NIELSON. Do I have to make what I consider a humanitarian decision, then defend that before a psychiatrist or psychologist?
Dr. JACOBS. You are missing the point. It is not just for sale. It is any healthy person, whether it be a loved one giving up it for their child or a stranger giving it up free, donating free to a stranger or someone, a stranger selling it for a stranger.
I think any of those people, because you talk about guilt, the guilt that makes a mother give up a kidney for a son is hideous guilt. We are talking about the "Jewish mother" thing. That is guilt you are putting on somebody. That is a guilt trip. Those people will suffer psychological damage afterwards.
Mr.NIELSON. Maybe I misunderstood what you have said. I thought you said you had to have safeguards. Anyone who says that they are going to give their organs--
Dr. JACOBS. Give or sell.
Mr.NIELSON [continuing]. Has to have a psychological examination to make sure he is in his right mind to do so. Is that what you said?
Dr. JACOBS. No.
Mr.NIELSON. What did you say?
Dr. JACOBS. If a healthy person, anyone who is going to give or sell a kidney, give it away free or sell a kidney to a relative or stranger, ought to have appropriate independent psychological evaluation to be sure they know what they are getting into, that they are not emotionally disturbed or financially disturbed so they can give informed consent, rational, informed consent.
Mr.NIELSON. That is exactly what I thought you said. I object to that.
Dr. JACOBS. What do you object to?
Mr.NIELSON. I think you will dry up the supply.
Dr. JACOBS. There is no supply right now. We are talking about healthy living people; there is no supply in healthy living people.
Mr.NIELSON. Dry up the potential supply, would go counter to the number of people who wish to give organs.
Dr. JACOBS. You are going to make it illegal to buy or sell, how are you going to dry it up? It doesn't make sense.
Mr.NIELSON. Whether you buy or sell or not, the fact is that--
Dr. JACOBS. Or give it free.
Mr.NIELSON. Or I think if, you would have to submit to some kind of psychological examination afterwards, I think you will cut down the supply.
Dr. JACOBS. I disagree with you.
Mr.NIELSON. That is my opinion.
Dr. JACOBS. I respect it.
Mr. GORE.I will be brief because Dr. Jacobs and I have had an opportunity to discuss this together before, and we will have another opportunity next month with a series or group of bioethicists who are going to come to discuss this in some more detail.
Dr.JACOBS. Well, it is one of the proposals.
Dr.JACOBS. You have to understand something--
Mr.GORE. You had said also in the past that the payment would vary depending upon the individual involved.
Dr.JACOBS. As it does in this country, it is up to them to decide.
Mr.GORE. And that some of these potential donors probably wouldn't ask very much because they would get a chance to see America.
Dr.JACOBS. What their motivation is is up to them. Mr. GORE. They might be willing to give you a cut-rate price just for the chance to see the Statue of Liberty or the Capitol or something.
Dr.JACOBS. What their motivation is is not important. Some of them may want to do it free. Whatever their decision, it is their decision, just as a mother will give it to a son or not, or an American would sell it or not. What their motivation is is not the--
Mr. GORE. Could they put it up as collateral on a car loan?
Dr.JACOBS. I don't understand what you are saying.
Dr.JACOBS. I have no idea. You are the lawyer, I am a doctor.
Mr. GORE. Well, if it has a property right--
Dr.JACOBS. You are the lawyer, so you can answer your own questions.
Mr. GORE. Actually, I am not, so I am asking because--
Dr.JACOBS. I am not a lawyer either, so you will have to ask one of the others.
Mr. GORE. It is your proposal.
Dr.JACOBS. My proposal is that they decide what they want to do with their body. Every American has the independent right, assuming they can make an intelligent, informed decision, to make it, fully protected, in our system. That is up to the individual.
If you want to say what the Soviet Union style of medicine is, you can or you can't give up your organs, well then that is what you are going to impose on this country by your legislation.
Mr. GORE. Let's suppose someone in the Third World wanted an operation for another health problem and came here but couldn't pay for it. Could they have an operation for something wrong with their appendix or something else and then--
Dr.JACOBS. Come to America?
Mr. GORE. In order to pay for it, tell the doctor to just take the kidney out while you are in there and use that to pay for the operation.
Dr.JACOBS. I have no idea what American hospitals are going to do in charging. That is simply up to them and in the American hospital, I doubt that could ever happen.
Mr.GORE. Now you have also said on several occasions in the past, including in an article you wrote for USA Today, that the Federal Government is currently paying 300 people in a pilot program to--
Dr.JACOBS. Not paying, had made an offer, I was told. Do you want me to go into that?
Mr.GORE. You wrote that the Federal Government has a pilot program to pay 300 people to have their kidneys removed, healthy people, and donate them to others.
Dr.JACOBS. That is what I was advised.
Mr.GORE. My question, for the record, is: Where is this pilot program?
Dr.JACOBS. I was told that it is a group in Hawaii, that is an independent organ procurement organization that had made arrangements with the Health Care Financing Administration, through a proposal that they made about 4 months ago, to get funding, I was advised.
Mr.GORE. What is the name of the group?
Dr.JACOBS. I was going to bring it to your committee.
Mr.GORE. No, you said you were going to tell me that information. Do you happen to know the name of the group?
Dr.JACOBS. I have it at home.
Mr.GORE. Can you remember off the top of your head?
Dr.JACOBS. About five words and a name and they are in Hawaii.
Mr.GORE. How much money are they getting from the Federal Government?
Dr.JACOBS. What they told me, because I haven't seen the papers--
Mr.GORE. What individual told you?
Dr.JACOBS. The man who ran it.
Mr.GORE. Do you remember his name? Dr. JACOBS. This is about a month ago. I have it at home. I will give the information to your committee.
Mr.GORE. Do you remember his name?
Mr.GORE. Was it a long-distance call from Hawaii?
Dr.JACOBS. He was in Washington and wanted to meet with me down in Washington. I couldn't get away that day.
Mr.GORE. Did he call you up? Dr. JACOBS. At home, yes.
Mr.GORE. To tell you about the program that he was getting funded by the Federal Government?
Dr.JACOBS. He wanted to talk to me about a number of things, one of which was that. Let me tell you what he advised me that he got. He told me he approached the Federal Government about 4 months ago with a proposal wherein he wanted funding, a grant, to set up a program with 300 individual donors, would be paid $20,000 per person to donate, healthy people, to donate a kidney, and that there will be a $10,000 brokerage fee paid to their organization for making those arrangements. That is what he told me.
The reason why he called me, he said, I was unable to make any arrangements in getting the things together; he tried to run an ad in the Enquirer newspaper, and that was turned down.Mr. GORE. The National Enquirer turned him down? Dr. JACOBS. I can't believe it. That is what he told me. Mr. GORE. I see. Dr. JACOBS. That is rather amazing. That is what he told me. That is why he wanted me to see if I could work with them and do something, and I said I am not going to turn that down. Of course, first we have to get our program going. Mr. GORE. Well-- Dr. JACOBS. Have you checked it out? Mr. GORE. We have checked it out thoroughly. There is no such pilot program. Dr. JACOBS. The guy lied to me. All I can tell you is what he told me. That is what I told you last week. Mr. GORE. You have written it in a national newspaper. Dr. JACOBS. That is what I have been advised.
Mr.GORE. And left the impression that the Federal Government is engaged in this kind of thing, and it is not. There is no such program.
Dr.JACOBS. Well, all I can tell you is what they have told me. I will get their names, and you can speak to them.
Mr.WAXMAN. We will hold the record open. We would like to get the information.
Dr.JACOBS. I would like to get it.
Mr.WAXMAN. The information you have, who called you?
Dr.JACOBS. I want to give that to you.
Mr.GORE. One final line of questions, very briefly, Mr. Chairman.
We could take a lot of time on this.
Is it your understanding of the hippocratic oath---you are a medical doctor, right?
Dr.JACOBS. Yes. Licensed in Maryland.
Mr.GORE. Is it your understanding of the hippocratic oath that it says first do no harm?
Dr.JACOBS. That is my understanding.
Mr.GORE. Now, let's say a healthy individual comes into your office and asks you to take out his kidney so he can get some money for the kidney. Isn't that unethical for you to permit that operation?
Let me ask you a specific question. Doesn't that violate part of the hippocratic oath which says first do no harm?
Dr.JACOBS. No, it doesn't, because the hippocratic oath was thousands of years old before we even had the ability to do transplantation. You have to balance the risks.
Let me explain something to you. Last year hundreds of family members, living family members, put themselves on the same block and had their organs removed.
Mr.GORE. That is very different.
Dr.JACOBS. No, it is not different. The risk to that mother is the same risk to that stranger. The motivation is different, but the same risk, the same harm potential is there.
It is minimal. But the same risk is there for the mother or the brother to a sister giving up a kidney as it is to a stranger. If you are talking about do no harm, Dr. Salvatierra was one of the ones who pioneered doing related donors in San Francisco.
Ask him why he does harm yet his organization comes out against doing harm.
Mr.GORE. But there the donor, without any other consideration involved, is making a conscious choice to balance the health benefits for a family member against the health risks for the individual donor.
Dr.JACOBS. So is the stranger.
Mr.GORE. No, because the stranger is doing it for monetary gain, and a doctor participating in a procedure that inflicts harm on the patient in return for monetary gain is performing an unethical act in violation of the hippocratic oath.
Dr.JACOBS. Forget about the hippocratic oath because it doesn't talk about kidney transplantation.
It didn't exist in the days of kidney transplantation, which is now. You have to talk about the modern aspects of it and the donor, whether it be a mother or a stranger, is under the same risk and plenty of mothers and plenty of sisters and brothers were under the knife last year to give up kidneys, and they are doing it for a relative, and even others, cousins and uncles are giving it up for relatives in the family.
Now, you have to understand what the motivation is there. There is a lawyer from Washington who wrote to us who wants to give up his kidney free to a stranger. That lawyer giving it up free to a stranger is under the same risk as a mother and sister and the same doctor will operate.
Mr.GORE. Let me just conclude.
Dr.JACOBS. If you want to legislate the hippocratic oath, that is what you are going to have to legislate.
Mr.GORE. Let me conclude by thanking the witness. I think this proposal that he has made---and incidentally, others have made similar proposals --- another business was started based in Maine with nationwide solicitation, some other countries have had a similar experience --- and other medical advances will force us to deal with similar questions in the future.
But I think that this proposal has stirred as much interest and conversation as it has because it forces us to confront basic values and weigh them against one another. I enjoyed discussing this.
But the proposal is so unsound in my view, and you understand I disagree with you fundamentally, that I think the legislation should be passed.
Dr. Jacobs has accused me in the past of having a Bible-belt mentality, Mr. Chairman.
Dr.JACOBS. Which I respect.
Mr.GORE. To that I will plead guilty and rest my case.
Dr.JACOBS. That is the final answer. I rest my case on that, too---whether his religion or morals should be made into law in this country or those people should have the right to decide on their own bodies, with proper safeguard, to do with their own bodies as they choose.
IMr. WAXMAN. How far would you go? As I understand your theory of a person having absolute say over any part of his body.
Dr.JACOBS. Not any say, because you cannot--
Mr.WAXMAN. You are talking about kidneys.
Dr.JACOBS. Only kidneys.
Mr.WAXMAN. Why not go beyond kidneys?
Dr.JACOBS. Because beyond that is suicide.
Mr.GORE. What about eyes?
Dr.JACOBS. That is a vital organ. A kidney is not a vital organ if you have two of them.
Mr.GORE. You have two eyes.
Dr.JACOBS. You lose your stereo vision. The National Kidney Foundation talks about the minimal risk in encouraging strangers to donate.
Mr.WAXMAN. So in your view of morality there is a limit to it because you are going to make a decision as to how far someone else can decide what to do with his body?
Dr.JACOBS. If is is a nonvital organ, it doesn't mutilate the person.
Mr.WAXMAN. How about an arm?
Dr. JACOBS. That is mutilation. There are laws against that.
Dr. JACOBS. The National Kidney Foundation says otherwise; there is no harm. The risk is most minimal. Mothers and brothers and uncles and cousins giving up a kidney know that is a minimal risk.
Mr.GORE. The same people who printed that have come out strongly condemning your proposal.
Dr. JACOBS. Let me give you the final answer on that. They control $2 billion of money. The kidney specialists in this country, the nephrologists, control the flow of $2 billion of their private dialysis centers. Most of the centers are privately funded.
If you want to do something effective in this world, cut the price of dialysis in half. You will find out the same 70,000 people are still getting quality dialysis.
The doctors would be driving Ford Escorts instead of Mercedes.
Mr.GORE. You are charging them with being corrupted by the profit motive?
Dr. JACOBS. They have a reason to maintain the status quo. The kidney specialists controlling $2 billion worth of dialysis money have a personal reason. They have their own personal motives, and $2 billion is certainly a lot of motive to control it and come out with a position now that was previously contrary to their other position.
Mr. WAXMAN. I thank you very much for your testimony. I gather this will be the beginning of a discussion that is now brought to people's consciousness, because we are now confronting certain moral questions which I think we have to look at.
Dr. JACOBS. One more question nobody has confronted is the brain-dead person. Before they die, if they can make their decision known, and if they are willing to make a decision and the monetary incentive will be what will make them make their decision---
Mr. WAXMAN. Or humanitarian concern. Like you, I am not so cynical to dismiss the idea that people have some humanitarianism, some magnanimity in their last moments.
Dr. JACOBS. The way to tell is simply do what you are proposing. You will find out a year or two from now, instead of going for 5,000 transplants you may have reached 6,000. By that time there will be 90,000 Americans waiting for transplants on dialysis.
Mr. WAXMAN. We will have to look at it again.
Dr. JACOBS. Obviously, the final answer is what works. You will know it. It is your way or my way. But one way is going to finally work.
That is the final answer.Mr. WAXMAN. Thank you very much, Dr. Jacobs.
[Dr. Jacobs' prepared statement and letter in answer to questions during the hearing follow:]
H. BARRY JACOBS, M.D
TOLL FREE 800-336-0332
International Kidney Exchange, Ltd.
11345 Sunset Hills Road
Reston, Virginia 22090 U.S.A.
The voluntary organ donor program in this country is a dismal failure. Too many citizens -- children, women and men -- anxiously await the health-sustaining and life-saving kidney which they will never receive. Not under the current donor program which offers neither incentive nor motivation for people to give up one of their kidneys to a stranger. There is no stronger motivation than a monetary one. There are two ways in which our government can go about relieving the endless wait of 70,000 Americans -- an often unfulfilled wait for a life-saving kidney, and save $2 billion per year (the cost of dialysis).
One of these options involves the establishment of a donor bank whereby any healthy citizen can "will" their kidneys, for removal after their death, to a national kidney bank. If the organs can be used., the government can then financially compensate the deceased donor's family, as per the donor's wishes. A match would then be made between the donor's kidney and someone awaiting a kidney. Priority would be given to length of waiting time, quality of the match and medical necessity, regardless of social or financial status on the part of the recipient.
The government would fund the medical costs involved -- at a considerable savings over even one year of dialysis for a kidney patient today. Since 80% of transplanted kidneys will function for more than five years, each additional kidney transplant will save $142,000 over five years. For every thousand dollars used to purchase a kidney, the government will save $15,000 or more in the cost of dialysis. This concept is really no different from the Lion's Eve Bank or the annual Red Cross Blood Drive. The donor makes the rational decision to donate his kidneys, or eyes, before death, and, in so doing, helps not only his own family, which received a monetary "insurance" benefit, but two kidney patients who otherwise are doomed to an existence of living on a dialysis machine.
The second option is for the government to fund a program whereby an informed and consenting adult kidney donor can be compensated for donating one kidney while still alive, and enjoy both the financial and spiritual rewards of helping an otherwise helpless and hopeless individual -- one handcuffed to a dehumanizing kidney dialysis machine. Because of shortages, kidney transplant operations help less than one out of ten patients. The majority of the 5,000 kidneys transplanted each year come from only 2,200 brain-dead citizens whose families gave permission for organ removal from their loved one. This program would not interfere with the limited source of brain-dead donor kidneys. In fact, this source would be augmented considerably.
There is a slight to moderate risk in transplanting cadaver kidneys due to a higher chance of infection caused by various methods used to keep the patient alive and ready for transplantation. All brain-dead respirator patients develop pneumonia (it is only a matter of days) and the infection risk to all their organs increases as each hour passes. Healthy donor kidneys are safer, more medical information about the donor is available and obtainable, more time is available to perform extensive testing, and the operations are electively scheduled.
God gave us two kidneys. We need only one-half of one kidney to live a normal healthy life. God also gave us the intelligence and ability to perform kidney transplantation operations. Some doctors raise the moral issue of risk when money is involved, but imply the risk is less for healthy close relatives donating a kidney. The risk to the donor is the same even though their motivation may be different. With a large enough "donor pool" a non-related donor's kidney has a very good chance of being a better match than, for example, a mother for her son.
The risk for serious injury or death is much less than one per thousand donors. It is the responsibility of the private physicians and operating surgeons to fully inform both donors and recipients of their respective risks, and to do everything necessary to minimize all risks.
The government should not have to fund the cost of organ transplantation. It is a well established principle of civil law that the one who causes the damage should be responsible for the cost of correcting the damage. Alcohol is the greatest cause of liver failure and a contributing cause of kidney failure. A slight increase in the tax on alcohol, borne by the users of alcohol who are subjected to the risk of alcohol, would pay for the cost of organs and for liver and kidney transplantation. Likewise, tobacco is a major cause of heart and lung disease, and a slight increase in the user tax for tobacco would pay for heart and lung transplantation operations and for the purchase price of those organs. This type of user tax is not unlike the tax for gasoline which is used to pay for construction and repair of roads.
In the final analysis, the kidney debate should be resolved by individual doctors and their patients; not by politicians.
H. BARRY JACOBS, M.D.
TOLL FREE 800-336-0332
Subcommittee an Health and the Environment
2415 Rayburn House Office Building
Washington, D.C. 20515
The Hon. Albert Gore, Jr.
It was a pleasure appearing and testifying before your committee hearing on Monday, October 17, 1983.
One of the members of your panel asked me to advise him what I believe would be appropriate psychiatric or psychological evaluations of all healthy, living donors. This includes both those who donate free for family members, as well as those who sell their kidney to a stranger.
You must understand that there is substantial emotional coercion involved when a family member donates a kidney for a loved one, and subsequent emotional problems in the future can develop from that. Emotional guilt is a strong persuader as well as the cause of psychological injury.
My recommendation is that any individual who will be subjected to an operation to give up a healthy kidney, be evaluated by a licensed psychiatrist or psychologist, independent of the transplant organization or doctors, in order to make the determination that the individual fully understands all the consequences, both emotional and physical, of their proposed surgery and that they can truly give informed consent.
As you heard on Monday, hundreds of patients every year, living related patients, are being subjected to the same risk physically that a stranger is subjected to, but the emotional risks for relatives donating kidneys are much greater, both immediate and long term.
You wanted to know the name of the organization which advised me that the government, Health Care Financing Administration, (H.C.F.A.), has approved a pilot experimental program to pay for 300 kidneys from healthy, non-related donors, offering the donors $20,000 per kidney and offering the broker $10,000 per transaction. I was recently advised that this was when Mr - Schweiker was in charge of Health and Human Services, and, as a pilot program, it did not need official approval from Congress. This apparently is why Congressman Gore was unable to locate this information through his careful research.
The organization is called Internationale Societe for Vital Organ Replacement, Ltd., Eighth Floor, 1136 Union Mall, Honolulu, Hawaii 96813, 808/523-1770. This is a Delaware corporation.. The man who apparently is in charge of this group, and the one who advised me of this pilot program, is Clifford Laughton.
At the request of Congressman Gore, I have set aside November 1st and 3rd on my schedule. Please advise me as soon as possible which of these two days, if any, my testimony would be needed, so that I may make appropriate arrangements.
Address questions or comments to Webmaster.