MPNforum Magazine

. “An honest appraisal of the development of MPD lists would be a heated story of various arguments, prejudice and moments of true insanity.”

— Judy Cuckston, founder of MPDchat

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MPN On-line Support – The Beginning

As Judy’s sidekick and manager of MPDchat until a few months ago, I can well understand her assessment. Along with her vaunted good humor, civilized conversation, and fierce intellectual prowess, Judy was intimately aware of the personal sacrifice list owners and managers make to maintain patient support on a daily basis. Like all of us, she was also aware of the ferocious contradictions of lists designed to support sick patients erupting in contention.

So let’s get this one issue out of the way up-front and then get on to the real power and wonder of our on-line MPN patient support world.

We’re not going to talk much in this introduction about strife and contention among lists, the 300 pound gorilla slamming against his cage. Of course he’s there jumping up and down, slinging waste at the bystanders. But he’s only a sideshow exhibit for those who want to stand by his cage and gawk. For the rest, the MPN convention & circus is in town, with friends, neighbors and newcomers all shuffling by the exhibits eating cotton candy, greeting each other and marveling at feats of science and magic, joy and suffering under the big top.

Judy is right, of course. But only partially. Her view is that of someone who is part of the history but blessedly free of the disease, without an MPN patient to care for and no pressing need under her left ribcage to know what’s happening. She opened her doors, laid out a spread for us on MPDchat and left to attend to other affairs and maybe play through the back nine now and then. .

For most of us populating these on-line lists, patients and caregivers, a clear-eyed, engaged view of MPN developments is a critical and immediate matter of life and death. And if we have to sit through occasional exhibits of clowns getting shot out of cannon, well, so what. Usually, it’s worth it.

In the very beginning, in the time of deepest darkness and isolation before the Internet really took hold, there was another dominant voice, a voice of reason and compassion committed to lead us to understanding and bring us together. It is that voice that launched on-line MPN patient support, a voice that can still be heard today on all the lists, through all the rattling of cages. Hers is the voice of an educator and a healer, aptly enough, come down to us from Mt.Sinai.

Her name was Harriet.

[Photo courtesy The Mount Sinai Archives]

In the beginning

For weeks, we could find no photograph of her.

That seems so astonishing, gone only these few years. She touched the lives of so many, a doctor and teacher for more than four decades, devoted to her hospital, her medical school, her patients.

She had a husband, children, grandchildren, pioneered MPN patient education, chaired Government and medical study groups, published widely. But no photograph could be found.

Not in the archives of patient support Lists. Not in the New York Times photo morgue. Not at The Mt.Sinai Hospital press room or the files of the MPD Foundation or even Google Images. .

It was not hard to imagine Harriet S. Gilbert, the woman who signed her letters and newsletter, ad sanum sanguinum. (toward healthy blood)

Here’s what we know. She was born in 1930. A child of the Great Depression. She died October 3, 2003 on the eve of the Patient-Doctor MPD Conference inScottsdale,Arizona. . She was 73 years old,

In between those two dates she mothered four children, cared for thousands of patients, published more than 70 scientfic papers on aspects of hematology and adopted myeloproliferative disease as her own cause. Dr. Gilbert conceived and organized the first conference that brought together MPN patients and doctors (1998) and was among the earliest researchers and supporters of interferon therapy.

She worked hard and did not seek fame or recognition. Her modesty is overwhelming. At first, we didn’t know why she followed this path down our back alley of hematology any more than we knew what she looked like. .

Even without her photograph or full biography, we knew her as the visionary Founder, the original source of MPN patient education and support. She was the first crusading MPD educator at a time of near total patient and even hematological ignorance of these diseases.

That might be the primary impact on us, as patients, but it is hardly the sum of Harriet Gilbert’s work. She became one of the world’s leading authorities on myeloproliferative disease, a full professor and research physician raising a family, a senior member of the critically important Polycythemia Vera Study Group, a mentor to residents, famously devoting herself to clinical patients. And she did all this long before women had easy access to positions of power and authority in the medical establishment..

Our search for a photograph finally ended up on the desk of Barbara Niss, archivist of The Mount Sinai Hospital. She provided us with images and a few biographical details

She graduated from Columbia University College of Physicians & Surgeons in 1955. She did an internship, residency and then fellowship in Hematology here at The Mount Sinai Hospital finishing her training here in 1961. She joined our staff in 1963 and rose to the rank of Professor of Medicine, Division of Hematology/Oncology. She was one of the first executive officers of the Polycythemia Vera Study Group… and a member of the Advisory Committee on Data Analysis and Management of the NIH. She was an Associate Editor of The Mount Sinai Journal of Medicine for many years where ‘she provided valued expertise, warmth and friendship’ according to a note they published after her death.

“I have scanned and attached two other images of Dr. Gilbert.,” wrote Niss, ” One is a much younger portrait shot, probably from the 1960s. The other shows her and Dr. Louis Wasserman, the chairman of the Department of Hematology

Courtesy, The Mount Sinai Archives

until 1973. He was also very involved in the Polycythemia Vera groups and was himself a well known researcher in leukemia. It would probably be safe to say he was her mentor.”

Dr. Louis R. Wasserman may in fact be our missing link, the connection between this brilliant and dedicated woman and the murky, unknown world of myeloproliferative disease. The Polycythemia Vera study Group (PVSG) was formed in the 1960’s and conducted randomized clinical trials and other studies of PV. For those interested, a book review on the PVSG findings ( lead editor, Louis Wasserman), appeared in the NEJM and describes im some detail the work of this seminal and extraordinary group, work that continue today, http://www.nejm.org/doi/full/10.1056/NEJM199503303321322

Harriet Gilbert went far beyond the confines of the university and the clinic.

Her vision and her life’s work transformed us from lost individuals into a dynamic, supportive international community of informed patients and caregivers..

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(E-mails from Harriet Gilbert, Courtesy of Robert Tollen, MPDSUPPORT.ORG)

Date: Fri, 13 Dec 1994 21:06:38
From: MPD GROUP
Subject: MPD GROUP
Dear Members who have addressed mail to the MPD Group,

This letter is from Dr. Harriet Gilbert, President and Director of the MPD Research Center. Some time ago I set up the MPD GROUP on AOL and exchanged some E-mail with you. I then “dropped out” because of other commitments to the MPD cause. Today I returned to AOL and read the mail in the MPD GROUP mailbox. I can’t believe how informative and exciting it was to read your communications. You are all an exceptionally bright and aware group of people and I had many surprises as I read through your letters.
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COULDN’T BELIEVE MY EYES

Date: Mon, 16 Dec 1994 23:32:53
From: MPD GROUP
Subject: RESPONSE TO YOUR WELCOMING MESSAGES Dear MPD GROUP members,

I couldn’t believe my eyes when I signed on the day after my first letter and found so much mail waiting for me. How come your responses are so prompt? What is your modus operandi to handle mail? Do you sign on every day? Please give me some advice and guidelines about the most expeditious way to proceed. By the way, I am composing this off-line and I hope that things will work when I sign on and attempt to send it.

….Let’s begin with some general comments:

I would like to thank Robert for the welcome back message and for providing the names that go with the “handles”. I find that I have communicated with most of you in the past through the MPD Research Center, so I feel that I already know you. I want to acknowledge Robert as the one who sent me the trial subscription to AOL. Without you I never would have become a member and it would have been a missed opportunity.
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MY ADDRESS

Date: Fri, 20 Dec 1994 02:55:56
From: MPD GROUP
Subject: QUICK FIX ON YOUR QUESTIONS
Dear Members:

Thanks for the mail and the information that is accumulating at a dizzying pace. I have made up a spreadsheet (Excel) that itemizes your histories, treatment, comments, and questions. I will try to deal with them in detail as time goes by but I want to acknowledge some of them now and deal with them temporarily.

Re my location: I have my main office in NYC at 950 Park Avenue. My hospital affiliation in NY is Mount Sinai Medical Center. I have a subsidiary office where I go one day a week in the Baychester area (Pelham Parkway) of the Bronx and I am affiliated with the Albert Einstein College of Medicine, the Weiler Hospital branch of the Montefiore Medical Center, and the Bronx Municipal Hospital Center in the Bronx.

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ULTERIOR MOTIVES

Date: Wed, 22 Jan 1995 23:32:57
From: MPD GROUP
Subject: “ULTERIOR MOTIVES”
Dear Members:

How heartwarming your responses are! I am becoming addicted to AOL and our group. I can’t wait to steal the time to log on and read your mail. I’m sorry that I can’t spend more time answering your questions and responding to your stimulating comments. Part of my problem is that I have “writer’s block” and I find it hard to keep from editing and reworking what I write. I also am compulsive about getting my facts straight and communicating them clearly. The dialogue that I am having with you is very helpful in getting me to write more freely and not obsess over every detail. I have so much to tell you and I want to get on with it! There’s time for reworking and refining the what I write later.

Re my ulterior motives: Part of my inspiration to found the MPD Research Center and establish the Patient Support Group was to be able to provide patients with the information they need in terms that they could understand. The first (and only) issue of the newsletter, The MPD Voice, was my intial attempt to do that. In that issue I mentioned my desire to write a handbook on MPD. Unfortunately, the work entailed in maintaining the newsletter was too much for me, alone, and with the departure of my MPD Research Fellow, it fell by the wayside.

… I thank you for the stimulation that you provide and the renewed enthusiasm that you have given me in the pursuit of my dreams about contributing to the lives of MPD patients in any way that I can.

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THE APARTMENT HOUSE

Date: Wed, 11 Jun 1995 19:29:16
From: MPD GROUP
Subject: THE FUNCTION OF THE AOL GROUP & SCOPE OF ITS CONSTITUENCY

Dear Members,.

…The more patients with MPD you see, the more the overlap between these syndromes becomes apparent, in that there are all combinations and permutations of proliferation that are seen amongst the group with MPD and a single patient may show transformation from one syndrome to another during the long course of their disease.

All of these syndromes have in common the expansion of a single clone of stem cells (the parent cells that live in the bone marrow and have the ability to produce several types of circulating blood cells – RBC, platelets, WBC) that has mutated and developed a growth advantage that enables it to crowd out and/or suppress the many other normal clones that usually grow in the bone marrow and produce the RBC, platelets, and WBC, all descended from different stem cells.

Think of the bone marrow as a large apartment house or multiple dwelling with many families living there. The parent or stem cell living in each apartment produces a family of children (mature blood cells) that go out and circulate in the neighborhood (blood stream and tissues of the body). The stem cell also reproduces itself so that there are always several producers who can carry on the family line of that clone. Each family represents one clone of bone marrow stem cells and the descendant of that clone. The bone marrow (apartment house) is polyclonal since it has many families or clones all producing children and reproducing themselves. Picture one family moving in – let’s say drug dealers and users. They are prolific in their reproduction and they also are stonger and have more clout than the other families. Pretty soon they begin to take over the other apartments in the building, putting their descendants into these apartments. The polyclones – other families that are unrelated and are each carrying on their particular line of descendancy – begin to move out or they stay but stop reproducing (maybe they don’t want to bring up children in that hostile environment, or maybe the bad clone keeps them from doing their business or shopping or good living and they just go into hiding in their apartment. What you might end up with is a building that looks like it houses only the druggie clone, all carrying the same genetic message, all possessing the same DNA that conferred the growth advantage to the clone in the first place.

Now if you wanted to rehabilitate the building you could gas everybody in it, sacrificing the good, as well as the bad families, and import multiple new normal families taken from somebody else’s building to set up housekeeping in their apartments. You would have established a polyclonal building and destroyed the bad druggie clone. That is the theory of bone marrow transplant. Of course, you would have to make sure that you eliminated every last druggie family from the building or else, if they come out of hiding from some closet or from behind the walls, there goes the neighborhood!

Another approach would be to try to coax the druggie clone to leave by making the environment hostile. Or you could interfere with the fertility of the druggies and keep the population down. The problem is, it isn’t easy to be selective in raising the discomfort factor for the bad clone without destroying the good clone and having everybody move out or stop reproducing. Hydroxyurea is not selective and it acts on both the druggies and the good families. So the proportion of families that come from the druggie clone to families that are polyclonal remains the same, even though the cell counts (number of people living in the building) is decreased and the problem is controlled.

Anagrelide goes into the apartment building and is able to pick out all the children of all the families – druggie and normal clones – that have brown eyes (let us say brown eyed children are equivalent to megakaryocytes). Anagrelide will inhibit the function of those children with regard to their ability to make platelets. …

Interferon comes into the building like the angel of death sent by God to slay the first born of every Egyptian family while sparing the Israelites. It recognizes the members of the MPD clone and destroys it, selectively. Of course nothing is perfect and some MPD families survive, while some polyclone families may die, but the proportion of druggies born from the reproduction of that single bad clone falls, leaving normal polyclonally derived progeny to reoccupy the building ….I hope that the imagery helps you. I have found it useful with patients of all levels of sophistication.
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ON ALTERNATE TREATMENTS

Date: Tue, 10 Jun 1995 22:34:20
From: MPD GROUP
Subject: MANY THOUGHTS FROM DR. GILBERT

I must remind you that it is because you are intelligent and motivated to learn but lack the medical background to grasp fully the full significance of the information with which you are besieged that you feel frustrated and not in control of your disease. It is not appropriate to set to arguing amongst yourselve about the relative merits of various forms of therapy for the various MPD syndromes. How can you expect yourselves to answer this unanswerable question and make decisions about your therapy that are derived from “truth” when THERE IS NO TRUTH? You must realize from the lack of unanimity amongst experienced and well-informed hematologists and oncologists, some of whom have hands-on experience in treating MPD patients and evaluating the results of therapy that THE ANSWERS ABOUT THE EFFECTS AND SIDE EFFECTS OF HYDROXYUREA, INTERFERON, ANAGRELIDE, AND ALL THE REST OF THE CURRENT THERAPIES ARE NOT KNOWN. There is a need for randomized studies to answer some of the questions that you pose. If the picture were so clearcut you would not find reputable and expert clinicians differing with one another as much as they do.

I’m sorry to bear such bad tidings. It would be far more comfortable to tell you that treatment A is the best and that B and C are dangerous and terrible. However, it’s not true and anyone who presents the dilemma as anything but a dilemma and as a clearcut, simple choice is not doing justice to his intellect or his patient. The cutting edge is where you want your physician to be so that you may benefit from every advance in the field. BUT, you want your physician to be wise, flexible, open-minded, and aware of the imperative to custom design therapy for each patient ad hominum and not ad hoc. Rather than beating the drum for one or another approach to therapy, I would rather expend my energy to educate you to the fact that there are knowns and unknowns about each therapy and each approach to management and to encourage you to learn what you can, keep an open mind, take a mature approach to the field of medicine and not entertain the unrealistic hope that your doctor is a god who can hand you unqualified health and guarantee you that he knows the best and only therapy for your disease.

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FIND YOURSELF A DOCTOR

Date: Tue, 10 Jun 1995 22:34:20
From: MPD GROUP
Subject: MANY THOUGHTS FROM DR. GILBERT

By and large, I believe that you all have a realistic appreciation that medicine is as much an art as it is a science. You can bear with the medical profession’s inadequacies and fallibility because you know that health care is given by human beings and not deities…Find yourselves a doctor with whom you feel comfortable and who you can trust and use that person for all he/she is worth to guide you through controversies and doubts. You will benefit from this approach to your care and will not be afraid to engage in a healthy exchange of ideas, feelings, and information as you face your disease head on with your eyes wide open. I believe in your magnificence. Please don’t let me down
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IN THEIR ALIVENESS MAY APPEAR BRASH AND CONFRONTATIONAL

Date: Tue, 10 Jun 1995 22:34:20
From: MPD GROUP
Subject: MANY THOUGHTS FROM DR. GILBERT

Each of you, without exception, is a remarkable and unique person. It is almost a given that a person who is well into adulthood, which you all are, and who develops an interest in electronic communication and has the initiative and intelligence to use e-mail as you do would be “one step ahead of the pack”. The remarkable thing is that through the single common denominator of the disease you share you are able to communicate you knowledge, feelings, opinions, and even biases in such an explicit, vital, and fervent way. If each of you could take a few steps back and reexamine your communications and interactions, each of you would give yourself a huge pat on the back for being so feeling, caring, honest, and impassioned in your search for truth, health, and self-improvement.

Intelligent, impassioned, committed and fervent people are “alive” and in their aliveness they may appear to be brash, confrontational, insulting, ironic, cruel, uncaring, etc. Please try to remember your specialness as a group and as individuals in that group. Through my reading of all the mail nigh these many months I cannot find anything venal or indicative of unkind or unethical motives in any of your E-mails. On balance, they are caring, honest, heartfelt, intelligent, and sincere expressions of the individual who is generating them. At some times I have felt the vibes of frustration from each of you and believe that this is the result of your intelligence and need to know and understand yourselves and your disease. It is the human condition to survive and in service of that motivation, to believe that you are doing all you can to act in your own best interest.

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NEED A LIST
Date: Wed, 24 Mar 1996 04:47:34
From: MPD GROUP
Subject: Re: (Just one daily email)
To: MensaBrain@aol.com

Dear Robert:

It’s Dr. Gilbert back again. I heard from several members of the “old” group that there is a new format for communicating with you folks and I certainly would like to join in. The pressure of research, teaching, practice, and administrative commitments has kept me off the AOL circuit for some time now but I’m definitely up for reactivating my participation. Perhaps the new system will facilitate my keeping up with the mail.

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Robert Tollen started the first patient-run on-line MPN support list. Briefly joining him was Joyce Niblack who had met Dr. Harriet Gilbert in 1990. Tollen and Niblack were strong personalties who did not get along. Joyce, after a short time, left the group and worked with Gilbert as a patient volunteer. These two ultimately developed the two strongest lists, competed for members and status and are the progenitors of on-line MPN patient support through MPD-SUPPORT and MPN-NET.
Take me back.