PART I – IN THE BEGINNING (home)
Until early 2003, I was an employee of one of the largest bone marrow donor registries in the United States. But this is a story that really began in the early 1960’s, and which influenced my career and my life to a great extent. It details how I spent more than sixteen years working for an individual and an organization that I feel eventually turned their backs on me. It is an insider’s view of a non-profit organization and government funded programs. In my opinion, it is in large part a story of greed and arrogance, and forgetting (or never knowing) who your friends really are. Perhaps most importantly, it is an effort to educate others, including employees everywhere and people who support charitable organizations. But please, please, please, do not allow anything you read here to dissuade you from registering as a bone marrow donor. There is a real need for people to volunteer, and while chances are very small that you will ever be asked to donate some of your bone marrow to a patient in need, you may be the only hope a particular patient has. To borrow a phrase from the Talmud, and from the website of The Gift Of Life Bone Marrow Foundation, “He who saves one life, it is as if he had saved the entire world”.
Perhaps some readers will say that these are the writings of a disgruntled former employee. I disagree. I was never disgruntled. Am I cynical? Absolutely. I have always had the benefit of a healthy amount of cynicism, and my experience at the Registry has only served to fortify it. I enjoyed working at the Registry. I believed, and still believe that the work I was doing was important and helped people. It saved lives. I liked my co-workers. No… I promised myself I’d be honest when writing this; I liked almost all of my co-workers. I consider myself blessed because I have always enjoyed and taken great pride in the jobs I’ve had. I’ve never worked at a job where I couldn’t wait to go home at the end of the day. I despise that mindset. Quite to the contrary, I practically lived at the office. When I wasn’t in the office, I was working from home. I worked nights and weekends. I even worked as an unpaid volunteer for several years! I guess we all make mistakes.
This site is truly not an effort to attack individuals. With just a few exceptions when I mention public figures or deceased individuals, I will use only initials to identify the people involved. If you are familiar with any of the organizations mentioned, you might know who the individuals are, but if that is the case, you would know them even without me using their initials. Most of the individuals mentioned here have little expectation of privacy. The identities of all directors of charitable organizations must be disclosed in their organization’s annual filing with the IRS, which is open to public inspection by anyone, either at the offices of the charity, or by submitting a request to the IRS. Even their annual compensation and home addresses must be disclosed, and are therefore part of the public record. Indeed, the names and photos of their employees have voluntarily been posted on the Web previously, by both the HLA Registry Foundation and the Bergen Community Regional Blood Center. Charitable organizations enjoy benefits not available to other organizations by virtue of the benefit they provide to society. With these benefits comes a responsibility to operate in the public interest, and the understanding that they will be held to a higher standard, and subject to public scrutiny. Under U.S. law, a tax-exempt organization may not be founded to benefit a specific individual or family. You can certainly start the John Doe Relief Fund to raise money for poor John, but the IRS will not recognize the Fund as tax-exempt, and donations to that fellow, as wonderful as he may be, are not deductible.
Everything in this story is true and accurate to the best of my knowledge. If there are any details that you believe are incorrect, please let me know and I’ll make corrections if I can verify your information. I want the information on this site to be correct and to have credibility. Much of what is contained here are my personal observations and opinions, which regretfully, may differ from those of yourself or others.
If you are or have been connected with any of the organizations mentioned in this story, and have comments or information you would like to share with me for inclusion in this story, please contact me by e-mail. Even if you are simply a Web surfer who landed on this site and wish to comment, please feel free to do so.
Finally, you would not be reading this if it weren’t for the advent of the Internet and the Web. I believe that history will rank the creation of these mediums alongside the invention of the printing press, the discovery of electricity and even the development of the written word. I believe that the impact the Internet has made on society and business in just a few years has been greater and more immediate than that made by any almost any other invention in human history. For many, perhaps for most, it has been THE reason to join the computer revolution. Besides, printing presses are too bulky and expensive, and ink is messy. Thanks to the Web, no trees were harmed in publishing this story. This site was created using 100% post-consumer recycled electrons. Please recycle after reading.
I grew up in Brooklyn and Staten Island, New York, both boroughs of New York City, during the 1960’s and 70’s. During this time, my father worked in Manhattan at a company called ITV. They sold and serviced commercial video equipment such as television cameras and videotape recorders. In the 1960’s, most TV programming was still in black and white, with just a few shows broadcast in color. I remember the NBC peacock that preceded each program that they broadcast in “living color”. ITV’s customers were TV stations, government agencies and large corporations. Most of the consumer electronic devices popular today, such as VCRs, camcorders, DVDs, Personal Computers, cellphones and digital cameras had not yet been invented. The huge AMPEX video tape recorders in use back then took two (strong) men to move and were nearly the size of a refrigerator, if you picture one that is laying on it’s side. Instead of a small cassette tape, these monsters used big heavy reels of 2-inch wide magnetic tape.
I looked forward to those days when I was off from school, and could go to work with my father. After all, they needed my “help” to fix all that electronic equipment, and besides, experienced six or seven-year-old electronic technicians are hard to find!
I vaguely remembered a fellow named Elie Katz, who worked at my father’s company as a salesman, and whom I had met a few times. He lived in New Jersey, across the Hudson River from New York City. One day, sometime in the early 1960’s, I was at work with my father when for whatever reason, the salesman, Elie Katz, needed a ride home to New Jersey, and we dropped him off in our car. Some of the little things you remember, especially as a child can be interesting. We had dropped this fellow off somewhere on a busy highway. I think it was probably on Route 4 or Route 17 in Paramus, NJ. He lived nearby, but on the other side of the highway. As a child growing up in the city, I was always taught to cross the street at the corner, by the traffic light, where it was safe. But out there on the highway in New Jersey, there were no corners to cross at, and no traffic lights in sight, and many lanes of traffic to cross. I was worried that our passenger would get run over trying to cross the road. He did not.
I was in High School from the late 60’s to early 70’s. You know, Apollo Missions, Star Trek, Vietnam, Watergate, and Woodstock. I don’t believe the phrase had yet been coined, but I guess I would have qualified as a “nerd”. During my senior year, I took an elective course with the misleading title “Computer Math”. In fact, it was a rudimentary programming course taught by a math teacher. Pocket calculators and personal computers did not yet exist. Slide rules were the pocket calculators of that era. Have you ever seen, much less used a slide rule? The class used a desktop programmable calculator made by Hewlett Packard. It had a small display, a paper tape, and a very limited amount of (volatile) storage. The exercises in class involved writing short programs to perform some calculations, then waiting your turn to use the “computer” to enter and test your program. Pretty unimpressive by current standards, but very valuable experience, and probably the course I enjoyed the most from my time in high school (right up there on my list of favorites along with driver education). This was my introduction to programming and software. As an aside, I bought my first calculator around 1974. It was made by a company called Bowmar, and was called the “Bowmar Brain”. I think it sold for around $150, which probably equates to close to $1,000 in today’s dollars. It had rechargeable batteries that didn’t last very long, and a really tiny red LED display. Today, you can buy inexpensive programmable scientific calculators that will run circles around Bowmar Brain. That is the nature of the beast with computers and silicon chips. Maybe I should have waited another 20 or 30 years before I bought it.
In the ensuing years, I moved to New Jersey and began working in the computer field. I worked as a computer operator on large IBM mainframes (System 370 and then 303x machines running DOS/VS, OS/MVS and VM), and as a programmer, working with several different languages on various hardware platforms. During this time, I graduated from local county and state colleges with degrees in Computer Science. I was in graduate school, working towards my Master’s degree in Computer Science, and working as a programmer, when a conversation with my father in late 1986 changed the future direction of my career. .
In late 1986, my father called me and asked if I remembered a man named Elie Katz that he had worked with nearly twenty years earlier. I did. Well, my father had stayed in touch with Elie over the years, and had just spoken to him. Elie and his wife had raised two sons and still lived in the same area in New Jersey where we dropped him off on the highway all those years ago. Of course that wouldn’t have been possible if he had gotten run over on that dark stretch of highway many years earlier. I was relieved to learn that my childhood fears were unfounded. Interestingly, for a few years in the 1980’s, I worked as a computer operator at a company in Paramus, New Jersey, which unbeknownst to me at the time, was very near where Elie was living. Talk about ships passing in the night.
Elie told my Father that one of his two sons had been killed in an automobile accident, and his other son had been diagnosed with leukemia, and had received a bone marrow transplant. (Another factoid: Clare Boothe Luce, who coined the phrase “No good deed goes unpunished”, also had a child who died in an automobile accident.) In the mid-1980’s, when the Katz’s were told that their son J.K. needed a bone marrow transplant, there weren’t many places to turn if a family member wasn’t a close enough genetic match to be the bone marrow donor. The first bone marrow donor registries had been set up to recruit bone marrow donors in the United States in the early 1980’s. They had initially relied on a base of existing HLA-typed blood platlet donors. A nationwide donor network, the National Marrow Donor Program (NMDP) was not started until 1986, in Minneapolis, Minnesota.
The family literally searched the world looking for a donor, and found a match somewhere in Europe, I believe. J.K. received his bone marrow transplant at the Fred Hutchinson Cancer Center in Seattle, Washington around 1985 or 1986. Today, J.K. is alive thanks to that donor. Surviving the bone marrow transplant however, is even harder for some than surviving the disease that necessitated the transplant in the first place. Many transplant recipients experience complications resulting from the chemotherapy or radiation used to eradicate the cancerous cells, or from the drugs that have to be taken for the rest of the recipient’s life. Perhaps their biggest challenge comes from their own immune systems. Rejection can take the form of Host-Versus-Graft Disease (HVGD) or Graft-Versus-Host Diease (GVHD) which can be fatal. While bone marrow transplants can be life saving, they are not a panacea. (If the reader is knowledgeable about HVGD and GVHD, please e-mail me, letting me know if both are common complications of allogenic BMT’s, and how the two differ.)
Elie decided to start a registry of bone marrow donors so that other families facing a similar crisis would have a source of hope when searching for a donor. He had started to sign up volunteer donors, and had gotten a personal computer (an ITT Xtra), which was one of the early IBM PC/XT clones. He wanted to create a database of donors and perform genetic matching of patients and donors. He asked my father if he knew anybody that could write a computer program to do the matching. The answer was yes, and that person was ME. My father asked me to call Elie to see if I could help him.
I spoke to Elie Katz and agreed to drive over to his home and learn more about what he wanted to accomplish. His “office” was a spare bedroom with a desk, a computer, and a cardboard box containing consent forms signed by a few dozen donors he had recruited for his bone marrow donor registry. He called it “The New Jersey HLA Registry Foundation”. He was applying to the Internal Revenue Service for recognition as a not-for-profit organization. HLA stands for Human Leukocyte Antigens, which are the genetic markers that are used to match organ donors and recipients. The tissue typing is necessary to try to prevent or minimize the rejection of the transplanted organ, or in the case of bone marrow transplants, the occurance of host-versus-graft disease, which can be fatal to the transplant recipient.
I agreed to help Elie with the software he needed to match patients and donors. I should have heeded Clare Boothe Luce’s admonition. Because I was working and going to school, I would make the half-hour trip to Elie’s home on the weekends to do the programming. Back in 1986, I didn’t have my own computer (unless you count the cute little Timex Sinclair 1000 computer I bought a few years earlier, but the Timex Sinclair and it’s contemporaries of that era are the stuff of another story, and it was really more rightfully classified as a toy rather than as a computer). I would spend most weekends at Elie’s house, usually working late into the night in the spare bedroom, long after Elie and his wife had gone to bed.
Initially, I wrote the software in dBase III which was from a company called Ashton-Tate. DBase was an interpreted (as opposed to compiled) language, and, of course, ran under DOS (version 2.x or 3.x, I think) since, mercifully, Microsoft had not polluted the computer world with MS-Windows yet. (I am digressing, but I don’t like Windows. I never have. Compared to MS-DOS, Windows in my opinion always was, and continues, even with the version running on this computer, Windows XP, to be an unstable environment.) As a programmer, I was more comfortable working at the “DOS prompt” than with a mouse. dBase was great for development work, but for large databases and complex programs, not to mention very slow computers compared to today’s hardware, dBase quickly became too slow to be useful. We switched to a dBase compatible, compiled language called Clipper, which was developed by a company called Nantucket. Clipper was great. It was perhaps a hundred or so times faster in running my programs than using dBase, and Clipper was a more powerful language. Elie eventually bought an IBM PS/2 Model 70 to run the searches on. This was one of IBM’s microchannel machines, and at the time was a top-of-the-line computer. It even had something new… these tiny little 3.5” floppy disks, that held four times more data than the 5.25” floppies I had used up until then. Imagine… 1.44 Megabytes on a diskette instead of 360 Kilobytes!!!
I continued to develop software for the Registry over the next two or three years, working as an unpaid volunteer. Around 1989, Elie moved the Registry into a one-room office he rented in a church building near his home, and hired his first employees, including me. I was now the Registry’s Manager of Information Systems. What had started as a small software project and volunteer work was now becoming a career. At first, Elie honestly believed that setting up the software he needed was a one or two day job. Perhaps at most, he thought, I’d have to return the following weekend to finish up. I had a better feel for what was involved in developing the software he needed, but even I never expected the job to turn into a full-time, long-term affair. With the Registry growing rapidly, I had more and more responsibilities.
In 1990, I received my Master’s Degree in Computer Science. I was also working part-time at another job here in New Jersey doing programming on a Prime minicomputer system under the PRIMOS operating system (Prime has since disappeared). Prime Computer, based in Natick, Massachusetts was an interesting company (see David Mandel’s Prime history). Their systems competed for the same customer base as computers made by Digital Equipment Corporation (DEC). Digital was also located in Massachusetts and they also disappeared, having been bought by Compaq. That was before Hewlett-Packard came along and bought Compaq. I wonder who will come along and buy Hewlett-Packard. Anyway, that brings me to the next part of my story…
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