The Foundation has been formed to save lives being lost because people needing organ transplants aren’t receiving them. There are several problems involved; and we’ll discuss them briefly here.
The Donor Problem
Simply put, the supply of donor organs has not kept up with the need for those organs. There were, as of the last report, more than twice as many people in need of transplants as there were transplant operations in the entire preceeding year; and the gap is widening.
Fewer people are volunteering to become donors; and it's worth examining some of the reasons.
Reason number one: Mistrust of the healthcare industry, stemming from the perception that the public is being asked to contribute body parts to organizations which then retail them with extremely high profits. The $150,000 - $350,000 cost of a liver transplant isn't printed on the patient's bill as a charge for a replacement liver, but there's little difference from the patient's perspective whether the charge is for quarter-million dollar liver, or a free liver installed for a quarter-million dollars.
There's a perception that the healthcare industry is far more concerned with profits than with it's patients' well-being. It's difficult to trust any organization whose behavior indicates that their financial gain is more important than your (or your loved one's) life or health. This perception is fueled by such things as unresponsive handling of patients in emergency rooms, placing administrative paperwork higher on the priority list than medical care, artificially inflated billings, and refusal to provide medical care to the uninsured.
Reason number two: Mistrust of the medical profession, stemming from its close association with the healthcare industry. There's a perception that the two overlap and interlock; and that everything objectionable about the healthcare industry is so with the medical profession's blessing.
There's also a perception that the medical profession practices intellectual and professional snobbery; and that it guards its specialized knowledge only to maintain a blackmailer's hold on the uninitiated.
It's particularly interesting to note that while the medical profession, as a whole, suffers under this perception, individual doctors, nurses, and medical technicians are generally more highly regarded than their practice or profession as a whole.
Reason number three: Anger and resentment on the part of prospective donors for the current system, stemming from the perception that the entire system is in conflict with our basic values in that it's unfair (doesn't apply the same rules to everyone), it's unjust (doesn't provide for equitable exchange of value), and it's duplicitious (doesn't practice the altruistic values it's trying to tap into when it asks prospective donors to give freely of themselves.)
The Matching Problem
When our bodies are invaded by something from the outside, our immune system attacks the invader to render it harmless. That's all very well when it's fighting off a disease or infection; but downright dangerous when it's attacking a transplanted organ. Because of this immune system behavior, it's necessary that the recipient's immune system accept the transplant as a natural part of the recipient's body. While there are drugs which suppress the immune system, they are expensive, deprive the patient of the normally beneficial behavior of the immune system and, in some cases, produce undesirable side effects. Currently, six immune system factors are checked for a match. Some transplant experts are saying that there are additional factors that need to be checked and matched but at present those factors are being ignored. In addition to the immune system factors, blood types must match or be compatible. The important point here is that the more donors there are, the greater the chances that one of them will be a complete match for the recipient.
The Financial Problem
Access to the current system is not available to many because of the high costs involved. For example, patients awaiting a transplant organ and surgery in the intensive care unit at the University of Pittsburgh Medical Center are billed $3,000 per day, whether or not an organ becomes available before they expire. Recipients of a liver transplant, for example, can expect a hospital bill on the order of $250,000 of which, typically, only $10,000 may go to the surgeon who actually performs the operation. Post-surgery immune suppressant drugs are expensive (hundreds or even thousands of dollars monthly).
Anyone who is economically disadvantaged and without a substantial medical insurance policy is screened out right at the beginning. Frequently, they simply aren't referred to transplant facilities or told how to go about getting onto the transplant waiting list.
These people aren't included in any of the transplant statistics. The system has completely failed them.
The Allocation Problem
Allocations are currently performed by UNOS (United Network for Organ Sharing), a government-funded private organization in Richmond, Virginia. UNOS maintains the patient waiting list, serves the community of transplant facilities (their board of directors is comprised of representatives of every group immediately involved in organ transplantation except donors and recipients - UNOS appears to be an organization of, by, and for professional middlemen), and wonders in their newsletter why more people aren't signing up as donors.
The existing allocation scheme is biased to provide organs on the basis of proximity, rather than on actual need. In a front page article of the April 1, 1993 Wall Street Journal , Dr. Thomas Starzl of the University of Pittsburgh Medical Center was quoted as saying: "It has come to be that the indication for a liver transplantation is possession of a liver, not the need for one."
While some organs are being transplanted into patients who do not have such a high level of need, patients elsewhere are dying for lack of those very same organs. Dr. Goran Klintmalm of Baylor University, in the same article, was reported to have been forced to make a decision to accept organs of marginal quality and quoted as saying: "We'll take anything now."
Obviously, this approach to organ allocation isn't working very well, isn't serving patient needs, and surely isn't fulfilling the wishes or intentions of those who donated their organs.
The Racial Problem
Actually, there are at least three problems that fall into this catagory:
Racial problem number one: There is a racial bias in the donor population. The percentage of caucasian donors exceeds the percentage of caucasians in the total population. This means that other groups are under-represented. The problem lies in the fact that, for example, blacks have a higher percentage of blood type "A" requirements than the present donor population provides. It's also been reported that there are additional immune factors that are important for transplants to blacks. The solution to the problem is easily stated: We urgently need more non-caucasian donors. The same story probably holds true for other groups, too, but the research results aren't in yet.
Racial problem number two: There is a racial bias in our research effort level. The primary thrust of our research is aimed at caucasians. Other racial groups haven't received as much attention; and we need to do "catch up" efforts for blacks, orientals, hispanics, and indians. Research requires funding. Those funds need to be raised and competant researchers put to work.
Racial problem number three: There are racial groups with substantial economically disadvantaged segments which lack access to the system. This is really part of a much larger problem which overlaps into the transplant picture. Other organizations, groups, and individuals are working to deal with the poverty issue; but we intend to seek ways for these "economically disadvantaged" groups to gain access to the organ transplant system.
The Harvesting Problem
All of the volunteers in the world can't help if the clinics and hospitals don't harvest our life-saving organs. It has been reported that the harvestable organs from four-fifths of all donors are not harvested because no one at the hospital knew the expired patient was a donor.
Some interesting issues arise here. With the proximity bias in the current allocation scheme, one is led to wonder if anyone really wants to know -- unless they happen to have a patient waiting for an organ that another just expired patient can provide. After all, it does require a surgical team and operating room to harvest the organs, and these aren't free. Could it be that the proximity bias is actually holding down the supply of transplantable organs? We'll probably never know, since the facilities who operate in that mode would never admit to doing so, but it's worth considering. The solution is to provide a means of determining quickly whether or not an individual is a donor at the point of brain death -- and motivating hospitals to use it and to harvest usable organs.
A Solution Strategy
The solutions are neither medical nor technical. Given that the perceptions exist and are widely shared, it is necessary to either alter the perceptions or to provide a solution free of these negative associations. Given that more people are dying while on the waiting list; and that any public education campaign will require a substantial amount of time to have any significant effect, the second approach would appear to have the greatest chance to save the most lives.
The solution mechanism must be independent of the medical profession, the healthcare industry, the insurance industry, and of government. It must be morally and ethically acceptable to all parties, and must be perceived by prospective donors as the implementation of a fair and just process. Further, this mechanism must meet the needs of both organ donors and organ recipients.
The Second Life Foundation
The Second Life Foundation will maintain a national list of registered organ donors and will seek to enroll volunteer organ donor members.
Initially, the Second Life Foundation will provide hospitals, clinics, and physicians with a toll-free touch-tone access to a voice response computer system which will permit these authorized users to get an immediate answer as to whether or not a brain-dead patient is an organ donor so that life-saving organs can be harvested and allocated to the patients who need them.
Once this step has been completed, plans call for the inclusion of blood type and DNA data in the donor data base and a computer-to-computer dial-in capability, so that the quality of donor-recipient matches can be substantially improved and speeded up.
The operations of the Second Life Foundation will be funded by voluntary contributions, in most part from its members. Foundation membership requires registration as a volunteer organ donor, a $100 minimum donation, and filing a completed membership application, which directs that disposition of the harvested organs be under direction of the Foundation.
The Foundation will direct allocation of organs harvested from members so that those with greatest need will have highest priority and those with least need will have lowest priority. Using the number of weeks of life remaining (assuming no transplant) might be a good way to prioritize need. This first-level prioritization should serve to insure that the greatest possible number of people survive.
Within each priority level, the allocation will be prioritized by quality of match. This second level prioritization assures that the best possible matches are made.
When one or more matches of approximately equal quality is possible, the following priorities will be applied:
Strength in Numbers
The Foundation's short-term membership target is 10,000,000 members (less than the population of the New York metro area) with a long-term target of 100,000,000 members.
As we succeed in meeting our membership goals, we will not only be able to implement the donor data base system described earlier, but should also be able to develop and incorporate the DNA data to insure more rapid and higher quality donor-recipient matches.
In addition we'll be able to sponsor some much-needed research in several important areas:
Sound a bit far-fetched? Consider what we'll be able to accomplish as we reach our membership goals!
Our effectiveness to bring about needed change will be determined largely by the size of our membership. We will have a strong voice, since we represent a membership who feel strongly enough to put their money where their mouth is.
Further we will not be just blowing hot air -- we will be making positive, concrete contributions of our own in the form of the national on-line donor data base, the results of sponsored research to advance the "state of the art", and a substantial increase in the number of organ donors.
We will have both the carrot and the stick; and because our motivation is life itself for ourselves, our families, our friends, and our communities, we will change the system so that it works for us.
Our Progress To Date
We have about six months of planning and preparation behind us, and have just had our Articles of Incorporation approved by the Iowa Secretary of State's office. The Second Life Foundation was incorporated in Iowa because that's where we are. It's a non-profit corporation because we plan to measure our success in lives rather than dollars (Not that dollars aren't an important part of the picture!) The Foundation has not and will not issue stock or any other instrument of ownership.
Work is already underway on the on-line donor data base system. The software has been designed (with provisions for the future addition of DNA data) and is currently being implemented. We are in the process of completing specifications for the system hardware and have been talking with vendors; and should be ready to order by mid-June. The system is fairly large and will require a thorough "shake-out" to ensure that it's ready to go into on-line operation. We expect it to be thoroughly tested by the end of July. We've scheduled a full month to load membership and donor data into the system, so it should be ready for hospital/clinic access early in September.
We have a tight schedule, and plan to report our progress in this journal every two months or so, as time and funding permit. We hope you'll hear most of what you'd like to know about on the evening news, because achievement of our goals will be newsworthy indeed.
In the meantime, you're invited to make copies of the donor registration and membership application forms and encourage your friends and neighbors to become organ donors and Second Life Foundation members.
About Our Name
The Second Life Foundation is so named for a number of reasons, none of which have anything to do with any particular religion or religious affiliation.
The founder was recovering from an emotionally debilitating divorce and spoke of his past as his "previous life" and his future as his "second life" - and was wondering how to give it meaning. This Foundation is that "how."
There was some philosophizing about the ability to "pass on" no longer needed parts of oneself so that others might live. Surely anyone who underwent a life-saving transplant operation would similarly demarcate their life, perhaps calling the time after the transplant their second life.
Then too, there was some thought given to the second lives the passed on organs would have there are some two dozen parts that can be harvested and each could conceivably to to a different recipient.
All of this together resulted in the name "Second Life Foundation."
Articles of Incorporation
Bylaws of the Second Life Foundation
Copyright © 1996 Morris R Dovey Revised: December 16, 2003
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