PART II – BUILDING THE REGISTRY (home)

Who was Elie Katz ?

The short answer is that I’m not really sure I know. That may sound like a strange statement from someone that worked with him for so many years, spent so much time in his home, and knew him since I was a child. He was secretive. He would never tell you more than he had to. He was very private. So was his wife. She was from France, and still had family in Paris.

At home, Elie and his wife M.K. spoke French almost exclusively. When he was speaking to relatives on the phone, it was usually in Hebrew. Elie spoke a number of languages fluently. He never spoke to me about his deceased son. Never. He almost never spoke about his other son, J.K., whose illness was the impetus for Elie starting the Registry.

My Father told me that Elie Katz was born in Egypt, and lived in Israel at some point in his life. He was supposedly a pilot in the Israeli Air Force, although he never talked about that with me. His obituary in the Bergen Record (Hackensack, Bergen County, NJ) on August 18^th, 2003, mentioned that he was also in the British Air Force, but whether that service was connected to Israel is unclear to me. I believe he also lived in France at some point, and no doubt that is how he met his wife. He claimed to have several doctorate degrees, said he was a nuclear physicist, used the initials “PhD, D.Sc” after his name on all printed material, and insisted that his employees refer to him as Doctor Katz. He never told me where he went to school, and I never asked. He never had any diplomas displayed in his office. We never had any discussions about nuclear physics. Because he was running a medical registry, many people incorrectly assumed he was a medical doctor when he was introduced to them as Dr. Katz, but he never claimed to have any medical training. Over the years, many of the employees at the Registry, as well as other persons, asked me about his credentials. I could not provide any answers.

Prior to starting the Registry, I believe he was in some type of business that involved selling electronics or communications equipment to foreign countries. This company, or one of his businesses, was called “Scan-Rate, Ltd.” He had once told me that he had set up much of the telephone system in one of the countries in the Middle East, perhaps Saudi Arabia, if I recall correctly. And of course, as I mentioned earlier, he was a salesman for the same New York City company that my father worked for when I was a child. Other than that, I know nothing about his past. Because of his foreign language proficiency, his international background, his secrecy, and his age, in relationship to the timeline of World War II, I’ve often wondered if he might have been a former spy, but I never asked him. I think he would have made a very good spy. You never know.

The Squeaky Wheel Gets The Oil

Elie Katz screamed. He screamed at everyone (but never at his wife). Employees. Telephone operators. Secretaries. Deliverymen. People at other companies we dealt with. Complete strangers. Everyone. Even Norma. Pity the poor receptionist that would put him on hold. Even I was not immune. Only, in my case, because I had done so much for him and the Registry, I felt very comfortable returning his fire, or in some cases ignoring him. I’ve often told people that Elie did not really consider the day to have started until he had his first fight of the morning with me. I truly believe he enjoyed it. Sort of like a sport, I guess. I think most people were taken aback by him. He intimidated many people, including his own employees. I believe his inability to intimidate me frustrated him. I can’t tell you how many times I heard anecdotal reports of his behavior from people at other companies we dealt with. This served as validation for me. At least I knew I wasn’t imagining it. It’s rude. It’s abusive. It’s a trait that helped him build a successful organization, but at what cost? I’ve never bullied people. I simply don’t have that capacity within me to treat people the way Elie did, and I’d be too worried about how I would be viewed by others for me to do so. I’m sure I wouldn’t have had as much success as Elie in creating the Registry if I were in his shoes, mostly because I consider myself to be pretty shy, although my coworkers might not agree with that self-assessment. I wouldn’t have been able to talk to people the way he did, or to approach complete strangers and ask for things the way he did. Perhaps it takes traits like his to build successful organizations. I would like to think that being successful and having respect for others are not mutually exclusive.

Contempt

In my opinion, Elie Katz was a contradiction. (Not to mention that he was a riddle wrapped in a mystery inside an enigma.) In some ways, he was very generous to his employees. Unlike most companies I’m aware of, everyone at the Registry enjoyed little perks that made working there a little nicer. There were no restrictions placed on the telephones, so if you had to make a personal call, there was no problem (that is, if having your calls subject to Elie’s eavesdropping didn’t bother you). You didn’t need a code or a key to use the Xerox machine. There was a kitchen for the employees to use. There was even unlimited free coffee. When everyone got their own e-mail address, there were no restrictions on it’s use, and people took advantage of that. On workdays preceding a holiday, the office would generally close early. The control freak in Elie Katz would NEVER announce the early closing until the day in question. Sometimes it was not announced until a few minutes before the office closed. But I guess time off is time off. Don’t look a gift horse in the mouth.

On the other hand, Elie struck me as terribly rude, often crude, and having contempt for nearly everyone. Some things he would say to me privately about some of the other employees shocked me. I suspect he had the same contempt for me also. I guess nobody is perfect.

Digital Equipment Corporation (DEC)

Elie Katz’s nerve (or more precisely, his chutzpah) never ceased to amaze me. He could pick up the phone, call a company he never dealt with before, ask to speak to the C.E.O., and tell them (if he got through) that he needed this or that for the Registry. Most of the time, you don’t get anywhere with that approach. Many large corporations that have formal corporate contribution programs that require grant applications to be submitted. Many have a very narrow definition of the types of organizations and causes that they will support. Sometimes, if your call does get transferred to the CEO’s office, and their secretary is away from her desk at that moment, you might get lucky. Perhaps that’s what happened when Elie made some calls to ask for computer donations, although he said he knew the head of Digital Equipment Corporation (DEC), so who knows. I thought that DEC was an exceptional corporation, and I still mourn their demise.

They were based in Maynard, Massachusetts, and were a major force in the computer business, with their line of midrange VAX machines, and before that with their PDP line of computers. As I mentioned, DEC eventually succumbed and became part of Compaq Computer, which eventually succumbed and became part of Hewlett Packard. (Reminds me of a story about a little fish.) The head of Digital Equipment was Ken Olsen, a fellow who, as I’ve read, didn’t believe that personal computers were going to become a factor in the computer business. But he ran a company with a great corporate conscience. When Elie called them around 1989, and said he needed a donation of computer equipment, they said YES, and gave us several PCs, monitors, printers, and some other equipment. The DEC Personal Computers they donated were in fact Tandy (aka Radio Shack) machines that Tandy was manufacturing for DEC with the Digital Equipment nameplate on the outside of the computer. Open up the case, and everything inside said Tandy. Very well built machines, actually. They were Intel 80386-based computers that came with a DEC branded version of MS-DOS. Two years later, as the Registry grew and moved to a larger office, Elie asked them for additional machines. They gave the Registry an equipment grant to spend on whatever DEC hardware and software we needed. We got several 486-based PCs, networking hardware, a DEC file server for our network, monitors, additional laser printers and an uninterruptible power supply (UPS). The DEC laser printers were actually nearly identical to HP Laserjet IIID printers, and were made for Digital Equipment by Canon, who also built the Laserjets for Hewlett Packard. I think there’s only a couple of companies actually making this stuff, but they slap different nameplates on the outside for each company they are selling them to. Most computer hardware is coming from China now, but the Canon printers were made in Japan by Canon, for DEC. As I said, Elie had a lot of nerve, but I guess that’s part of the reason he was able to get a lot of the things he wanted. That, and good people like those at Digital Equipment Corporation.

Because of the DEC donations, we were able to set up a local area network (LAN) in the office, which allowed all of our employees to have their own computers, and to have access to the Registry’s Donor file simultaneously. Other companies, including Novell and WordPerfect also donated software.

Bulk Rate Mail

We printed our first newsletter in 1992. There were several reasons for publishing a newsletter. It reminded our Donors they were still in the Registry, it was a means of keeping Donor’s addresses updated in our files, but most importantly, it was a means of soliciting donations of money. I think our first newsletter was mailed to around 85,000 Donors. It seemed like a project we could do in-house. We got a permit to mail at non-profit postage rates (similar to standard-mail rate, which used to be called bulk-rate mail). But please don’t call it junk mail. We bought equipment to prepare the mailing, including an inkjet printer.

Do you have any idea what an undertaking it is to mail out 85,000 newsletters, even if everything goes smoothly? It didn’t. The newsletters were printed on cheap, thin, limp, probably recycled paper that lacked any rigidity, crispness or body. We had purchased a machine to apply little gummed tabs to seal the newsletters shut, which was required if mailing them without envelopes at non-profit discount rates. The newsletters would just jam up the tabbing machine because they didn’t have enough stiffness to feed through the rollers. Forget about the tabs.

It was decided that we would buy envelopes and stuff the newsletters into the envelopes manually. We also had smaller remittance envelopes printed up that we could stuff into the outer envelopes along with the newsletters, so people would mail back donations. But the newsletters were too big to fit into standard #10 or #11 envelopes, so we first shipped them out and had a printing company fold them one more time, so they would fit into our envelopes. When we got the re-folded newsletters back, we started stuffing, sealing, and addressing. It took weeks. Everyone in the office helped. Then they had to be delivered to the Post Office, about 10,000 or so at a time.

We did other newsletters, usually about a year apart, but we hired a mailing house to prepare them and mail them out from that point on. If you have a large mailing to send out, hire a professional mailer to do the job. Let them have all the fun.

Imaging That !

In the mid-1990’s, we wanted to set up a document imaging system that would allow us to have access to our rapidly growing collection of paper files via our local area network. Once again, Elie talked several companies into donating the computer hardware and software for the project, including Bell & Howell, Panasonic, Cornerstone, Kofax, and several others. He got a Boston area company named Intelligent Document Processing (IDP) to build a system out of the parts that were donated, and write the custom software we needed. For reasons I don’t completely understand, the project died at a certain point. I think IDP underestimated the amount of work that would be necessary to implement our system, and wanted the Registry to start paying for the work at some point. The project was abandoned and the equipment sat unused. This was a major disappointment to me because of the equipment and time that was invested in the project. We never did computerize our filing system.

Smile, You’re On Candid Camera

Elie installed a closed circuit T.V. camera outside his office door, and had the monitor next to his desk in his office. The miniature camera was disguised as a smoke detector, but there was never any attempt to conceal the fact that he had the system installed, and everybody in the office knew it was there. Perfectly legal, and I never had a problem with it being there. In fact, except for the hallway outside his door, he could not see much of the office on his monitor anyway. I think he just wanted an early warning system that would alert him of people outside his door. Maybe it was because the camera was disguised, or perhaps it was a result of the atmosphere that Elie instilled among the staff, but many of the employees were absolutely convinced that he had cameras hidden around the office and was observing them from inside his office, or even from his home when he wasn’t in the office. Because of the paranoia this created among the employees, I believe that if you feel you must install a surveillance system in the workplace, you should use undisguised cameras, and put them in plain sight. Otherwise, every smoke detector, fire sprinkler, exit sign, and emergency light becomes suspect.

Another practice that I think was ill advised was the monitoring of employees phone calls, or at least the way it was handled. Again, I don’t believe there was anything illegal about the practice, quite to the contrary. I believe the courts have ruled that employers have the right to monitor phones, e-mail and Internet use and other activities that occur in the workplace and while using company facilities. Everybody at the Registry knew he could and did listen in on their calls, but that doesn’t mean they liked it. Just make one personal call too many, or say something that Elie did not approve of to someone, and the screaming followed almost immediately. Not the way to gain the trust and respect of your employees, in my opinion. Elie felt it was his company and he could do what he wanted. If you didn’t like it, work someplace else. What a fantastic attitude. How unfortunate.

Being Sworn To Secrecy

In 1997, I got my first cellphone. It was my personal phone, not one provided by the Registry. I’ve never had a pager. Soon afterwards, I gave two of the managers in the office my cellphone number with the stipulation that they not share it with the rest of the office, and under no circumstances was Elie to know about it’s existence. I wanted to make it easier to be reached in an emergency, if I was out of the office. Paper jams in the Xerox machine, or a printer that says “toner low” does not constitute an emergency. If he knew that I had a cellphone, I feared it would give Elie another way to make my life miserable. Within a day or two, everyone in the office had my cellphone number stuck on their computers or on a Post-It note tacked to their phones. Rule of thumb: If you want it to remain a secret, tell nobody. Tell your dog if you must tell someone, because he won’t repeat it. This rule also applies to secret family recipes for baked beans.

I felt that my concerns about Elie finding out about my cellphone were well founded. Both prior to becoming a paid employee and afterwards, I was subjected to unrelenting phone calls or messages on my home answering machine. When I wasn’t in the office, it seemed that Elie wanted to be sure he was still controlling my life. Most of the time, it was about nonsense, or at the very least, things that could wait until the next day. This went on from 7:00 A.M. to Midnight, seven days a week, including Saturdays, Sundays and holidays. I was generally safe when he was asleep, but even then, there were no guarantees. On a few occasions, he would call me in the middle of the night if he couldn’t sleep. I guess he assumed I wasn’t sleeping either, or he didn’t care. And God forbid I did not return his messages within a few minutes. There were often a half-dozen messages from Elie stacked up on my answering machine, all left within a few minutes of each other, and each one louder than the last. Legally, if I wasn’t an employee, I think this would constitute harassment, but I put up with it. Big mistake. In my opinion, Elie was a control freak of the first order. I think a lot of my behavior over the time I worked for him was a conscious effort by me to prevent him from thinking he had succeeded in controlling me, but I should have made it absolutely clear that I wouldn’t put up with it. I regret not having taken a stand and putting him in his place. If you find yourself subjected to this type of behavior, put your foot down.

I doubt he ever found out about my cellphone until I mentioned it to him during our last conversation, shortly before his death. I was certain that if he knew about it, I might as well throw my phone into the trash.

Money, Money, Money

The Registry quickly outgrew it’s small office in the Church, and in 1991, moved to an office building a few miles away, in River Edge, New Jersey. We expanded several times in the early 1990’s, taking more office space, hiring new employees, and opening several “satellite” offices in Philadelphia, Boston, and Buffalo, N.Y. I think we had about 18 employees at our peak. I even got my own office, right next to Elie’s. Probably so he could keep an eye on me. Our building was by no means a luxury office building. In fact, some things about it were pretty crummy, but it was not unlike most other commercial office space in the area.

Unless you’ve ever leased office space, it’s probably never dawned on you just how expensive it can be, at least in the New York/New Jersey metropolitan area. In the first ten years in River Edge, we spent about $1 million just on rent, and that doesn’t even include our other offices. Perhaps it would have made more sense to buy our own building or space in a condominium building and take out a mortgage. At least you build equity. (More about equity, later.) I suggested this idea several times over the years, but nothing was ever done other than a half-hearted effort to look for less expensive space around 2000 or 2001 when our lease was up for renewal. The Registry was eventually moved out of River Edge by the Blood Center.

A word about expenses… Many people just don’t get it. Yes, we were a charitable organization, and yes we (supposedly) existed to help people who need to find a bone marrow donor, but running an office is expensive. Notwithstanding the corporate and private contributions and NMDP funding that the Registry received over the years, it costs a lot of money to operate. Salaries, rent, office supplies, laboratory testing, insurance, telephones, postage, printing, and many other expenses really add up. One way we had to recoup some of these expenses was to ask families for whom we conducted donor drives to guarantee payment for each donor we tested, if other funding (ie: NMDP funding) was not available to pay for the testing. Some families and groups we worked with were indignant when they learned that we were charging more to test each donor than what we actually paid for the lab work. That’s an altruistic view of the world. The truth is that someone has to pay the expenses, or we (just as any organization) would cease to exist in short order. The best things in life may be free, but the necessities can be quite expensive.

On the other hand, I feel that the six-figure salaries paid to Elie and to his successor were excessive. Perfectly acceptable if we were a profitable public corporation, but in my view, out of line with the size and mission of the Registry, and the source of it’s funding. A good part of our funding was tax-deductible contributions, many from individuals donating $10 or $20 apiece in response to our fundraising appeals.

There have been so many scandals in the news over the last few years regarding charities that seem to exist for the sole purpose of making their executives wealthy, that I think it’s incumbent for all charitable organizations to ensure their practices are completely above reproach. I am not implying that anything illegal or unusual took place here, quite to the contrary. It’s was probably no different than at most charities in the United States. Overwhelmingly, the money spent by the Registry was spent wisely, and many families were helped because of us. But how many of the individuals that supported the Registry would have written those checks if they knew how much Elie Katz was being paid, or what eventually happened to much of our funds?

Unlike some charities where just pennies of each dollar of their donations actually get spent on the things they supposedly exist for, the Registry was probably one of the best examples you could find as far as how we spent our money, and a model for other non-profits. I’m proud of that, but there were exceptions...

For most of the time since the Registry was founded, Elie had a leased car that was paid for by the Registry. No problem there. The fact is that he would occasionally travel on Registry business, and having a company car seems like a reasonable thing, maybe even a necessity. But was it necessary to lease a luxury vehicle? Wouldn’t a Ford Taurus or a Buick Regal have sufficed? Chevrolet Caprices and Impalas are nice solid cars. Was a Lincoln Continental necessary? Was there any fiscal oversight? Isn’t that the fiduciary responsibility of the Board of Directors?

Hummm. The Board…

The Board

I believe it is a legal requirement that non-profit organizations have a board of directors, and that these board members conduct at least one meeting a year. At the Registry, during Elie Katz’s tenure, these annual meetings took the form of dinners at local restaurants with the board meeting taking place immediately beforehand or afterwards. Very nice I thought, and a small token of appreciation to the individuals who volunteered as board members. I think it was partially a reward for the work I had done for the Registry, perhaps it was also because Elie valued my input, but for whatever reason, he would invite me to the dinners and Board meetings. I was never a member of the Board, and I did not have a vote on the matters that came before the board.

When Elie Katz left the day-to-day management of the Registry, and I.S. became our C.E.O. in 1997 (see part III), I.S. held the board meetings either in our office or at St. Josephs Hospital. I was never invited to the meetings during his tenure, and when I expressed an interest in attending, I.S. told me I was not welcome. Perhaps he was afraid of me opening my mouth. Besides it being, in my opinion, a bad decision to not encourage (or even require) managers to attend the board meetings, I think prohibiting or discouraging attendance by anyone, employee or not, speaks to a larger problem with an organization’s governance. I’m not certain if this practice would be legal if I of anyone else challenged it, but I doubt it.

I’ve read a lot about the fact that many Boards of Directors are merely window dressing, and that in many cases, people sit on Boards simply for the prestige. Elie’s board was comprised solely, I believe, of Elie’s personal and business acquaintances, as well as his wife and son. Two of the board members (prior to our “affiliation” with St. Josephs) were in the medical profession. What always surprised me was what appeared to me to be the total lack of oversight exercised by the board. It seemed to me that pretty much without exception, anything Elie desired was approved without so much as a single dissenting comment. In my opinion, the Board meetings were little more than a “rubber stamp” for Elie’s wishes, right up to the votes they cast regarding the dissolution of the Foundation and the disposition of it’s assets. (In fact the final vote cast by the Board was done without a formal meeting. The votes were submitted by fax.) I have absolutely nothing against any of the former Board members, but I do think the system is flawed. Perhaps there needs to be some mechanism put in place by the government to ensure that charities are indeed governed by an independent Board of Directors that truly exert some meaningful influence over the operation and the direction of the organizations they are supposed to govern. The executives running the charity should be answerable to the Board, and not vice versa, as the situation appeared to me. Again, I doubt that this is an isolated case, but it’s the one I’ve had the opportunity to witness, and these are the conclusions I’ve drawn from it. I recommend the reader refer to a paper on the subject by SEC Commissioner Harvey Goldschmid, entitled “The Fiduciary Duties Of Nonprofit Directors And Officers”.

I am aware of just one instance of one of Elie’s board members dissenting about something. It involved a board member that I believe was an accountant. He was quickly replaced.

The Admiral

Many persons reading this were probably born after the United States involvement in Vietnam. It is interesting to note that there is actually a very important connection between Vietnam, U.S. bone marrow registries and the National Marrow Donor Program.

The chief of U.S. Naval operations in Vietnam from 1970 thru 1974 was Admiral Elmo R. Zumwalt, Jr. His son, Elmo R. Zumwalt, III, was a young Naval Lieutenant who also served in Vietnam. After serving in Vietnam, the younger Zumwalt developed, and died from multiple forms of cancer that his father believed were caused by his exposure to Agent Orange, the defoliant he had ordered the use of.

No doubt because of his role in authorizing the use of Agent Orange and it’s link to his son’s illness, Admiral Zumwalt became involved in the National Marrow Donor Program, serving as it’s Chairman. There is another link between marrow donor registries and the U.S. Military. Another reason the government has provided so much financial support to the NMDP is because they believe that in the event of nuclear war or accident, where large numbers of troops or civilians are exposed to radiation, having an existing pool of HLA-typed marrow donors available that can be identified quickly will save lives. A scary thing to think about, but apparently something that has been given a great amount of consideration by the government.

Later on, Admiral Zumwalt started The Marrow Foundation, based in Washington, D.C., to raise money for the NMDP. Much of the government funds that support the NMDP and therefore, the local donor registries around the country, are a direct result of the efforts of Admiral Zumwalt. It was my honor to meet Admiral Zumwalt in the early 1990’s when he attended a Dinner organized by the Registry. Admiral Zumwalt died in January, 2000.

(Admiral Zumwalt wrote two autobiographical books. On Watch (1976) recounts his Navy career and warns of the Soviet naval threat. My Father, My Son (1986), co-authored with his late son, Elmo III, is an account of his experiences in Vietnam, and his son's illness. The latter was also made into a for-television movie of the same name by CBS.)

CLECs

CLECs are Competitive Local Exchange Carriers, companies that compete with the “Baby Bells” (the remnants of the old Bell Telephone System) for your telecommunications business. Some go after residential customers, and some are only interested in business customers. It’s a bit of a joke really, since the CLECs have to lease facilities from the “incumbent” or ILEC phone company, since they don’t have their own set of cables and telephone poles running down your street. In this area, Verizon is the ILEC. Speaking of Verizon, don’t you just love the trend of the last few years of companies with perfectly good, logical, very recognizable names (such as New York Telephone or Bell Atlantic) abandoning their identities in favor of nonsensical names invented by some PR firm. These silly names give you absolutely no clue as to what business they are in, are usually mispronounced by the uninformed, and can’t be found in any dictionary? Verizon??? (I originally thought it was pronounced VERY-ZONE.) What is a verizon? Is it animal, vegetable or mineral? At least International Business Machines is still IBM, and not Zyconq or Vazaxnt or Quevzx !!! I think XEROX was a pioneer in this name game. I wonder if anyone has created a website listing all the nonsensical company names that have been fabricated in recent years. Oh, and where did the name EBAY come from ??? Anyway, I digress.

We started getting sales pitches from the CLECs around 1999 or 2000. The Registry signed an agreement with one of these companies, named Teligent, to provide our phone service. Teligent went belly-up before our lines were ever switched over to them. This, however, did not stop them from trying to collect money from the Registry. At least it gave the collection companies something to do. Is this country great, or what!!!

The next CLEC through the door was someone named Conversent Communications. Why we signed an agreement with them is somewhat of a mystery to me, although saving money probably had something to do with it. They were brand new to the New Jersey market, and had just built a brand new switching office in Hackensack, New Jersey, not far from our office in River Edge. I think they used us as a guinea pig.

The morning our service was switched over to Conversent, our computer modems stopped working. Then our long distance service became intermittent or non-existent. At least our fax machines continued to work. Conversent technicians trying to solve our modem problems scratched their heads. Then the next group of technicians they sent over scratched their heads, too. This went on for weeks and weeks before they solved their problems. While I never did get an understandable explanation from Conversent as to what the problem was, I suspect it involved either the way they were doing analog to digital conversion in their switching office, or was caused by not providing enough bandwidth to each voice channel. We also let Conversent install a DSL line for broadband Internet. It took a week or two before they figured out why that line didn’t work. In fairness to Conversent, once they got all the gremlins out of their system, service was pretty reliable. I guess somebody had to be victim # 1, and it just happened to be us. We were pioneers. “Houston, Tranquility Base here…. Our modems are working.”

I wonder if Teligent’s bill collectors are still wasting their time.

Donors Placed At Risk?

The NMDP and it’s Donor Centers realize the need to disclose the risks associated with undergoing testing, marrow donation, administration of drugs such as anesthesia and Filgrastim, and other aspects of becoming a marrow or stem cell donor. They are very conscientious about making sure that there is informed consent by Donors in their program, and I give them high marks for their efforts relating to Donor education and advocacy.

Unfortunately, there are cases where organ donors have suffered injury as a result of their agreeing to undergo harvesting of an organ or part of an organ. These occurrences are quite rare, but the risks are real. For instance, there is a risk simply in being anesthetized, even for healthy individuals. Donors have sustained physical injury from mistakes made by physicians harvesting an organ. There may be risks to a donor’s health from the administration of some drugs. I would think there is even a risk to someone from just walking into a hospital. To be fair, and to put it in context, all types of organ donors face some risk related to donating an organ or a part of an organ. Some organ donors have died as a result. Does that mean we should not permit organ donations from living donors? I don’t think so. But donors must be completely informed of the risks so they can make the decision to donate intelligently.

The people that sign up to be organ donors have to be some of the most selfless people on the planet. I think it is a tragedy if ANY of them are harmed as a result of their volunteering. I think that even more has to be done to educate prospective donors of even the most remote possibility that they could be injured as a result of their participation. Indeed, I think some organ donors who sign a consent form would decline to do so if they were given more complete information regarding the possible risks.

Although not health related, there is a disturbing problem I’ve seen many of the Registry’s donors experience over the years, which I feel is totally avoidable, and quite honestly an embarrassment. When a donor has to go for further testing, such as is the case when one of our donors has been identified as a potential match for a patient, they are asked by the laboratory or hospital where they are directed to go for testing, for their name, social security number and home address. Donors are never expected to pay for these tests, but when for whatever reason, their bills are not paid promptly by the donor center or NMDP, or perhaps through no fault on our part, these donors received collection notices and threats from the facilities we sent them to, or from a collection agency. Would YOU agree to participate in the program if you knew it could negatively affect your credit rating, or that you could become the subject of harassment by a collection agency? I doubt it. Over the years, I’ve raised my concerns about this problem with others at the Registry, but unfortunately, for some donors, the problems persisted. Very embarrassing for us, and no doubt, very disturbing to our donors.

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