Historical Record, Vol. 8

This installment of the hemophilia "archive e-newsletter" is dedicated to the memory of Loras Goedken and the Goedken family. I've also included an attachment containing a scanned image of the COTT memorial brochure. Contained in the "archive" is a video tape of a program entitled "Ed Bradley Street Stories", which aired on CBS in 1992. In the program, CBS reporter Richard Roth interviews Loras Goedken, from which the following exchanges are excerpted:


R. R. "This is factor eight and it is what infected Loras Goedken with HIV."

L. G. [seated in an examination room having blood drawn]  "Every time I get an infusion,   I'm tired  of being a hemophiliac. Every time I have to run for a blood test, I'm tired of having HIV.  But, ya' gotta' go on."

R. R. [narrative] "Goedken is from a large Iowa farm family."

L. G. [seated next to his mother, Mary at their Iowa home] "Mother had to write all the names down so she wouldn't forget us."

R. R. [narrative] "Six of Mary Goedken's seven sons were born with hemophilia. For much of their  lives, the boys depended on transfusions of whole blood or plasma to stop severe bleeds. In the early '70s, factor eight changed everything. An infusion only took ten or twenty  minutes, and it could be done at home."

R. R. [walking by Loras' side in a cemetary]  "Who was the first to die?"

L. G. "From HIV? My brother Ernie. He was 47."

R. R. "And then?"

L. G. [standing in front of a long row of tombstones] "And then my nephew, Clayton at four and a half months old. Then Carl died; and Clayton's father, Denny; and then Jan, my wife, in  April of '90; and then Clayton's mother; and then Jay died in August of '91."

L. G. [speaking from a residence, presumably his home in Houston]  "If I had to point a finger, I  would probably blame the factor eight producers."

R. R. "Because?"

L. G. "Because I think they were forwarned. And I think they were forwarned early enough to prevent a lot of us from getting HIV."

R. R. [narrative] "Loras Goedken was diagnosed HIV positive just before Christmas, 1985. Then, the doctors tested his wife."

L. G. "I took her in in January of '86, and they called me at the office and gave me the results of  her test. And I just... [pausing] I left the office, walked around the block three times, and  I'd never been around the block downtown. [pause] -did a lotta' cryin', did a lotta' kickin', and had to come home and tell her she was positive."

R. R. "You told her?"

L. G. "Yep. It was my place to tell her."

R. R. "Why?"

L. G. "She was my wife. And I gave it to her."*


"Loras Goedken died at age 52 on August 24, and a singular family nightmare ended.

Altogether, eight Goedkens died. In the two decades of this [AIDS] epidemic, authorities know of no other American family that has suffered so much...

Year after year, the Goedkens died.

As Loras' wife Jan deteriorated, she spent days in front of the television with a credit card in hand, ordering stuffed animals and dolls from television shopping channels. Dementia set in. She no longer recognized Loras, and when she came home from the hospital before her death on April 18th, 1990, she did not know it was her house...

Loras Goedken was by all accounts a vibrant man, ambitious and energetic-even when hemophilia twisted his knees and elbows into swollen knobs. And he brought passion to his fight against AIDS.

He spoke at schools. He testified before a U.S. Senate committee hearing on HIV. He traveled to Japan last year as a guest speaker at the International Conference on Hemophilia and HIV...

Mary Goedkin is alone now-her husband died of stroke earlier this year. Now, in her little white house, dozens of family photographs line the walls and the shelves. The Goedkin brothers look out of their tinted graduation portraits, young, handsome, their eyes soft.

Half a mile away, there is a row of small pink headstones in the Sacred Heart cemetary in Monticello for the Goedken family.

"I didn't have to look for heroes outside my family," said [Loras' sister, Judy]. "I had them right here."**

* Ed Bradley Street Stories, CBS, 1992. ** "Family Watches Eight Die of AIDS", The Associated Press, 50 Rockefeller Plaza, New York, NY 10020, November 1, 1997.


Below are two links to other articles written about the Goedken family:



It is the intent of the "archive e-newsletters" to present historical hemophila-related material in an accurate and objective manner which is why I generally refrain from personal commentary and rely almost entirely on quoted sources from previously published material.

I would like to add one personal thought to this edition, however.

As I looked through the archive videos and articles re: Loras Goedken, I was truly struck by the monumental sacrifice made by Loras and his family. Even after losing a brother and brother-in-law to HepC and HIV in my own family, I still could not begin to conceive of the staggering tragedy the Goedkin family endured.

Because of the enormous price paid by hemophiliacs and tainted blood transfusion recipients during the AIDS crisis, we all now enjoy a much safer blood supply. Regrettably, I do not ever recall anyone in the general public saying "thank you".

To this day, there still exists no national memorial, visible to the general public, to honor our dead. There is a sculpture and fountain within NHF headquarters which does not include names, which few will ever see. Some local hemophilia chapters have planted trees or display quilts or photos of our lost, but those are the only efforts I am aware of. Engand, Canada, and Japan are among those countries who have established  national memorials, and I can only wonder why it has never been done in the U.S.

Once more, the hemophilia community must "do for itself". In that regard, I have included an attachment containing the COTT memorial brochure. Will YOU help us to remember our lost by supporting the Committee of Ten Thousand's effort to establish a national memorial? Information on how to help can be found in the brochure.

Thank you,

Barry Haarde

Historical Record, Vol. 7

This installment of the "archive e-newsletter" includes an attachment containing two articles regarding the research behind and introduction of factor concentrates. The first article, "Hemophiliac Doctor Helps Find Way to Save Bleeders" is dated May 14th, 1966 and references Dr. Edward Shanbrom, a researcher with Hyland labs, and his collaboration with biochemist and hemophiliac, Murray Thelin, of the University of North Carolina at Chapel Hill.

The second article, "New Drug to Give Hemophiliacs Aid", is dated 1969, and heralds the arrival of the new factor concentrates.   I'm also including some biographical information about Dr. Ed Shanbrom and his role in the development of factor concentrates.

"In the late 1960s, a new and more concentrated form of Factor VIII was developed. Drs. Kenneth Brinkhous of the University of North Carolina and Edward Shanbrom of Hyland laboratories produced the Factor VIII concentrate by pooling hundreds-later thousands-of units of plasma. From these pools they made large quantities of cryo[precipitate]. Then they redissolved the cryo, treated it with chemicals, fitered it, and centrifuged it-all to produce a white crystalline powder of pure, highly concentrated Factor VIII. *

"Hemophiliacs and their families greeted the new product with jubilation. Carried in a vial the size of a salt shaker, the concentrate had one hundred times the clotting power of raw plasma-so concentrated that the patient could inject it with a syringe if he wanted, instead of with a blood bag...By injecting 'early and often,' as manufacturers suggested, hemophilia patients could quickly control their bleeds, avoid the devastating episodes of joint pain, and gain enough freedom to go on vacations."*

"After completing his studies [at Chapel Hill], [Murray] Thelin was hired by Hyland, and he brought the Chapel Hill method with him...Shortly after he began to test this substance, he had a brain hemorrhage and decided to risk using the new concentrate on himself. After the first transfusion, his Factor VIII levels 'soared, and in ten days 'he walked out of the hospital smiling'...he and medical director of Hyland, Dr. Edward Shanbrom, decided to test whether the concentrate could be used to prevent prolonged bleeding. Shanbrom administered daily and weekly injections to Thelin. 'The results seemed miraculous: weeks passed without a bleed.' **

"Soon after they began producing the substance, [Dr. Shanbrom] noticed that the lab workers developed jaundice after breathing the plasma mist in the cold rooms. Suspecting hepatitis, he conducted tests on the liver enzymes of experimental patients, which showed pathological changes. 'It was obvious there was some kind of virus there', he said later. He did not consider withdrawing the product; like everyone who had seen its miraculous effects on hemophiliacs, he had no doubt that the benefits exceeded the risk. Yet he felt that, given the product could spread a chronic disease, the company should try to minimize the risk. He notified his superiors to take preventive measures, such as closing its collection centers in hepatitis hot spots. They ignored his suggestion, and he eventually left Hyland." *

Dr. Shanbrom "tried to persuade the four manufacturers of clotting-factor concentrates to use a detergent process for viral inactivation as early as the mid-to late 1970s. Though some of the companies demonstrated interest in the process, there were no takers because, as Dr. Shanbrom recalls, 'They said, We don't have a problem.' ***

"Dr. Shanbrom approached the [CDC] hoping to interest them in using and studying his detergent process of viral inactivation. The response was a letter from the CDC that he has saved to this day. The CDC expressed interest in Dr. Shanbrom's process but regretted that it did not have enough chimpanzees to enable researchers to conduct experiments with it. For want of adequate funding to the CDC for chimpanzees, clotting factor remained infectious." ***

"Once AIDS became an acknowledged reality, the drug firms quickly developed screening tests and virus-killing technologies...If they had heeded the warnings of factor VIII pioneer, Ed Shanbrom and others who issued early warnings about viruses, they would have abandoned the high-risk collection centers sooner and worked more intensively on virus-killing technology." *

"Shanbrom himself addressed this issue at a 1996 conference of AIDS victims in Japan. He had not taken the podium in order to defend himself; indeed, the moderator had introduced him as the man whose advice the industry should have taken. Nevertheless, Shanbrom lowered his head in a long ceremonial bow. 'I would like to officially and openly apologize for the pain and suffering to all the hemophiliacs and their families,' he said. 'While we attempted to do good we also did harm. For this I apologize."*

The following testimony was given by Richard Valdez, then president of "HIV Peer Association (California), at the September 12th, 1994 Institute of Medicine hearings:

"Ed Shanbrom, I met with him February of 1992. We talked for an hour just like two fathers because he lost a son too in a tragic traffic accident...He said to me, 'Dick, [HIV contamination of factor] was an accident waiting to happen.' Remember, Dr. Shanbrom was one of the co-founders of the process to make factor. His own workers [were] getting sick at Hyland from hepatitis...Ed Shanbrom said to me, 'Dick, the present and the future is bioengineering. Anytime that you grow a culture you have the potential for a virus.' "****

Ed Shanbrom was born in West Haven, Connecticut in 1924. He received his B.S. in biology from Alleghany College and his M.D. from the University of Buffalo School of Medicine. He served as physician, specializing in hematology, in addition to his work with Hyland/Baxter. Much more information about Dr. Shanbrom, the develpment of factor concentrates, and information on other key researchers can be found on PBS's website at the following URL:


Still more information can be found in the following books, from which I have quoted material in this edition of the "e-newsletter":

*"Blood, An Epic History of Medicine and Commerce", Douglas Starr. Alfred Knopf, Inc., 1998, page 224, 296, 340. **"Blood Saga, Hemophilia, AIDS, and the Survival of a Community", Susan Resnik. University of California Press, 1999, page 48. ***"Cry Bloody Murder, A Tale of Tainted Blood", Elaine DePrince. Random House, 1997, pg. 51. ****"Committee to Study HIV Transmission Through Blood Products", U.S. Department of Commerce/National Technical Information Service, September, 1994.


Barry Haarde

Historical Record, Vol. 6

I hope you are enjoying the "archive e-news letter" mailings. This installment includes two attachments containing scans of a serial cartoon strip which features hemophilia in its story line. Contained in the hemophilia "archive" are 77 panels from a cartoon strip entitled "Mark Trail”, page 1 and page 2, written by Ed Dodd and introduced in newspapers in April of 1946. The story featured in the attached scanned images, which ran from October, 1970 through January of 1971, centers around "Tommy Vine", who is described in the strip as a "victim of hemophilia".

In the story, "Tommy" is confronted with bullying from school mates and conflict with his girlfriend involving his overwhelming desire to keep his hemophilia a secret. Those living with hemophilia are often reluctant to inform others about their condition, a phenomenon that was vastly compounded by the spread of HIV/AIDS among hemophiliacs, which did not occur until ten years after the publication of this cartoon strip.

With the encouragement of his parents and his doctor, "Tommy" eventually discloses his hemophilia to the public after meeting Mark Trail following an untimely hunting accident, and the story ends happily.

I've included eight panels excerpted from the catoon series, all of which will be posted on our website in the future. More information about the Mark Trail cartoon strip and its creator, Ed Dodd, can be found on the link below.


The distribution list for the "archive" mailings now exceeds 100 and, as always, anyone wishing to subscribe or unsubscribe, can do so by contacting me by email. All mailings are sent by BCC for privacy.


Barry Haarde

Historical Record, Vol. 5

This installment of the "archive e-newsletter"  focuses on a very painful, controversial, and divisive era in hemophilia history. The attached scanned image is of a publication, dated February 1992, named "Action Now", published by Michael Rosenberg and the American H/HIV Peer Association. I've also included excerpts from several books, also in the "archive" which provide additional context on the era, as well as Rosenberg himself.

"The Emergence of Hemophilia Activism"

"In the early 1990s, a sudden and dramatic change was to occur in the hemophilia community. Buffeted by knowledge of extraordinary levels of HIV infection among those with the most severe form of the disorder, the difficulties of seeking redress through the courts, the acts of discrimination that had so injured children seeking entry to school- the August 1987 burning of the home of the Ray family in Arcadia, Florida, because their sons had attempted to enroll in school was but the most egregious event- hemophiliacs began to embrace a new militancy. It was a militancy that borrowed from the AIDS activism that emerged within the gay community, but that at the same time carried with it a perspective that was to set apart those who became infected through blood products. Finally, it was a militancy that would shake the relationship between hemophiliacs and their families on the one hand and the National Hemophilia Foundation on the other and would raise troubling questions about the extent to which physicians who had cared for hemophiliacs had betrayed their fiduciary responsibilities."*  "At roughly the same moment, organizations reflecting the sense of disaffection emerged on both coasts. In Massachusetts, Jonathan Wadleigh began to organize the Committee of Ten Thousand (COTT) as a support group for hemophiliacs who believed their needs had not been met by the National Hemophilia Foundation. On the west coast, Michael Rosenberg took a more aggresive stance as he organized the Hemophilia/HIV Peer Association. It was Rosenberg's vision that would ultimately inform and shape the fury of those who had come to see their plight as the consequence of profound institutional failure, although it was COTT that would take on the more enduring organizational form."*

Rosenberg's "Causes and Effects of the Hemophilia/AIDS Epidemic”, (also contained in the "archive”), "can be read as a manifesto of the new militancy. In it, Rosenberg laid bare his claims against those who had  failed American hemophiliacs. A 'genocide' was occurring because of the 'commercially driven practices of certain large pharmaceutical corporations.' The 'reckless disregard' of the manufacturers of processed plasma and the failure of the FDA to alter 'unsafe medical industry practices' were responsible for the HIV epidemic among hemophiliacs"*   "The voice of protest was also a call to action, and in November 1992, in what they described as a turning point, dissident hemophilacs brought their protest to the annual conference of the Hemophilia Foundation. At a sidewalk demonstration, protesters carried red stained pickets declaiming 'AIDS, the Avoidable Tragedy.' Inside the conference center, protesters wearing death masks confronted 'the corporate mass murderers' in the commercial exhibit space. A 'shame list' of physicians who had betrayed their patients by testifying on behalf of phamaceutical companies in litigation on corporate liability for AIDS was presented. It was a list that was indistinguishable from the medical leadership of hemophilia treatment. Demonstrations like this would be repeated in the next years at NHF conferences. The hemophilia community had become a house divided."*

"Although Rosenberg spoke of 'constructive dialogue', he depicted the situation as a great wave of alienation within the hemophilia community between persons with hemophilia and their families, on one hand, and on the other hand, the hemophilia institutional structure- including the National Hemophilia Foundation, the chapters, the other grant-based or publicly funded organizations presumably providing services to persons with hemophilia, and the personnel of the hemophilia treatment centers."**   Rosenberg asserted that "the hemophilia organizations are still in denial about the extent of the phenomenon before us." He used the term 'we the alienated', saying that 'we do not identify with the hemophilia institutions' and do not need 'an organization that cozies up to the corporate factor-makers...' He called for seeking financial relief in the form of a 'serious class action suit against the pharmaceutical giants for guaranteed comprehensive health coverage, or government subsidies like those granted to hemophilia families in Canada and in more than twenty other countries, or some combination'." **

The new militancy was on display at the National Hemophilia Foundation in Indianapolis in 1993.   "Meetings like this used to have an atmosphere of genial comraderie-almost like extended-family reunions-among the foundation, its chapters, the patients, and the doctors. Even the drug companies would attend, setting up 'infusion suites' in which patients could treat themselves if they needed some clotting factor, or parents could inject it into their children. At this meeting, however, the atmosphere was different, poisoned by the rising toll of illness and suspicion. The drug companies were nowhere to be seen; or for that matter, were some of the prominent doctors."***   " 'It pains me to say this, because my father was the vice-president of the NHF', shouted Rosenberg [at the meeting]. 'But the foundation has become the handmaiden to the industry!' He then announced that the class action suit the rebels had filed would name the foundation as one of the defendants."***   "Later a group of activists staged a demonstration outside the convention center, which TV crews had rushed over to cover. Some of the demonstrators wore black cloaks and death masks. Others, like Rosenberg, had no need to do so: Everyone could tell, merely by looking at him, that he only had a couple of months to live. At this point in his life, only anger sustained him. They waved placards: 'HEMOPHILIA HOLOCAUST'. They chanted: 'My loss, their profit!' and 'Shame! Shame! Shame! Shame!"***  "Rosenberg hobbled between the marchers and the media, a participant and a commentator at once. 'This is the et tu Brute,' he proclaimed. 'This is the history of shame and betrayal. These were the people that were supposed to protect us'."***

Interestingly, page three of the "Action Now" newsletter featured in this email contains an anonymous letter from a community member stating that "I would like to see a monument in memory of all in the hemophilia community we have lost to HIV."****   The goal of the "archive e-newsletter" is to preserve our past history for those who are not aware of it. Along those lines, I'd like to acknowlege and personally thank the Committee of Ten Thousand (COTT) for its effort to establish a national memorial for the thousands of hemophiliacs who have lost their lives to HIV/AIDS and hepatitis C. For information on the memorial project and how to contribute to this effort, please contact:

Terry MacNeill 112 Lexington Rd., Dracut, MA 01826 978- 937-9857

Mary Lou Murphy 71 Winfield St., Needham, MA 02492 781- 444-8672

* "Blood Feuds, AIDS, Blood, and the Politics of Medical Disaster", E. Feldman, R. Bayer, Oxford University Press, 1999, pgs. 38-40. ** "Blood Saga, Hemophilia, AIDS, and the Survival of a Community", S. Resnick, University of California Press, 1999, pgs. 178-9. *** "Blood, An Epic History of Medicine and Commerce", D. Starr, Alfred Knopf Inc., 1998, pgs. 342-3. **** "Action Now", M. Rosenberg, H/HIV Peer Association, Vol. 1 Number 1, February 1992, pg. 3.

Historical Record, Vol. 4

The attachment for this installment from the "archive” includes a scan of two brochures. One is "Facts About Hemophilia", an NHF publication that provides information about Hemophilia and its treatment. The brochure is not dated, but I believe it to be from the late 1960s. The other pamphlet provides information on applying for state medical assistance in Pennsylvania, and is dated July, 1969.

The content of these pamphlets will be displayed on our webpage in their entirety when the page is developed. Meanwhile, there are a few noteworthy items that I'll include in this email.   The "Facts About Hemophilia" brochure contains, among other things, the following statements:

"...the hemophilic child is a normal boy with a normal boy's aptitudes and desires. But his activities must be circumscribed. Repeated hospitalization and inadequate schooling are the lot of many... Handicapped as he is, his choice of career is limited...As in all instances where a child is 'different', there are psychological differences to be overcome and important adjustments to be made..."

"Having a hemophilic child is an emotional and financial strain for families...The child must be watched day and night and is a source of constant anxiety...Hospitalization and ambulance services are costly; so are doctor bills, transfusions and such frequently needed requisites as braces, crutches, and wheel chairs."

"Local measures such as pressure, application of cold and the use of various hemostatics, can at times control bleeding, but the keystone for therapy in hemophilia remains fresh whole blood, fresh plasma, or its derivatives."

"During the past few years the active ingredient which is lacking in hemophilia has been isolated and has been made available in relatively purified form (italics are mine). Early administration of such products does much to prevent the crippling effects of joint hemorrhages that have plagued hemophiliacs in the past."

The state medical assistance brochure for residents of Pennsylvania includes infromation on the program as it existed in 1969. Needless to say, the financial eligibility requirements were quite different from what they look like today!

I hope these mailings will continue to prove interesting to members of the hemophilia community and that they will serve to enlighten younger members of our community on our history.   I've added quite a few names to the email list recently, so anyone who'd like to receive the initial mailings can contact me and I'll send them out.


Historical Record, Vol. 3

Today is the 20th anniversary of the death of Ryan White. Vol. 3 of the "archive e-newsletter" is a tribute to Ryan's remarkable life. The attached scanned image from the "archive" is of the cover of 'People' magazine which featured an article on "The Last Days of Ryan White". I've also included some personal thoughts,some additional biographical text, and a few links to videos of his life on YouTube.

How many teenagers can say that they changed the world? Ryan White was born with severe hemophilia and contracted the AIDS virus from blood products used to treat his clotting disorder. While still a child, he confronted prejudice, bigotry, and irrational fear of the virus he carried. He was denied his right to attend school. Protesters regularly gathered outside his home. The White family was eventually forced to leave town after someone fired a bullet through the window of their family home. Ryan never complained about the illness that had befallen him and never succumbed to bitterness over the miserable treatment he received from many of his neighbors. Rather, he dedicated the brief years of his life to educating others about the realities of the AIDS virus. Eventually, he won the hearts and minds of millions of Americans and made the world a more bearable place for the few survivors who remain from the forgotten era of the hemophilia/AIDS "holocaust".

Please see:

Michael Jackson tribute to Ryan White at www.youtube.com/watch?v=dPYQ1-nXgmo Ryan White funeral w/ Elton John at www.youtube.com/watch?v=k9R7OXmrW8

The following is excerpted from ABC's 'Nightline', also in the "archive", which aired on 4/11/90 which contained parts of Ryan's funeral including these comments by the rev. Bud Probasco who delivered the eulogy. Video clips with various interviews of Ryan were interspersed throughout the eulogy footage.

Probasco:  "Ryan was diagnosed with a little-understood disease called AIDS. Not much was known about the disease back then. There were few drugs at first, and very little information about the illness. So, very quickly, a great deal of fear permeated Ryan's community." Reporter:  "Who's your best friend?" Ryan White:  "I don't have one." Probasco:  "The details of this struggle are well-documented, but what most people don't know is this; Ryan-there was not a person who knew Ryan that could ever hate him. People hated the disease that had taken over his body. Ryan White:  "I understand they were scared, [sniffling] but they should have just listened to the facts." Reporter:  "Mm,hmm- you understand?" Ryan White:  "Yeah, 'cause you know, there's a lot of fear in it." Reporter:  "But it doesn't make you angry or disgusted or...?" Ryan White:  "Not really, no. They were just trying to protect their kids."*

Ryan White died at 7:11am on Palm Sunday, April 8th, 1990 at Riley Hospital in Indianapolis at the age of 18. Ryan's funeral was held on the 11th at 2nd Presbyeterian Church in Indianapolis. Pall bearers included Elton John, Phil Donahue, and Howie Long. Also in attendance were celebreties and dignitaries from around the world, including Michael Jackson and Barbara Bush. The funeral was carried live on CNN, CBS, ABC, and NBC.**

* ABC "Nightline", March 2, 1988 and April 11th, 1990, MPI home video. ** Ryan White Timeline, http://ryan-white.memory-of.com/Timeline.aspx

Historical Record, Vol. 2

Here is the 2nd installment of the "Hemophilia archive e-newsletter". The attachment contains a scanned image from the "archive." Although the photo did not scan well, the text should be legible. In addition to the attachment, I'm including a few relevant comments on the subject, followed by a few notes on the intent and future plans for the "archive" mailings.

Known to industry insiders as "ooze for booze", the practice of locating blood centers in "skid row" districts and soliciting paid blood donations from the homeless, alcoholics, and IV drug users is nicely documented in the attached article which appeared in Philadelphia on March 5th, 1971. This practice was widely known to spread viral hepatitis to consumers of blood products, including hemophiliacs, who were often referred to as the "canaries in the coal mine" for the spread of blood borne viruses because of our heavy use of blood and blood derivatives. Exploiting high-risk individuals for blood donations was desirable for commercial blood banks because it was inexpensive to collect and highly profitatable to resell as "source plasma" to hospitals and pharmaceutical companies who required large amounts of blood for their patients and consumers of blood-derived products after pooling it in vats containing thousands of pints. The blood collection industry was largely unregulated at the time and operated under a patchwork of rules  which varied widely by region.

"Stuart Bauer, a writer for 'New York' magazine, investigated the world of down-and-out plasma sellers by becoming one himself. After a loved one died of transfusion-related hepatitis, Bauer went under-cover, donning old clothes and selling his plasma thirteen times over a period of seven weeks. His tale was a bleak one of hardened collectors and avaricious doctors, and of the winos, addicts, malnourished and destitute whose plasma they 'farmed' at the center in Times Square..." * "...he describes a scene in which the doctor at the center finds an elderly donor lying, quite still, with his mouth and eyes open. 'How are we today, Sydney?' he asks the old man. But Sydney is dead. After the body is removed, the doctor remarks that during his years of association with the center the man had donated almost half a million cubic centimeters of blood. 'One always hates to lose a veteran donor with a gamma globulin like his...' " "Another Los Angeles center, called Doctors Blood Bank and run by two local pathologists, paid donors in chits redeemable at a local liquor store."*

* "Blood - An Epic History of Medicine and Commerce" by Douglas Starr, pg. 208-9. Random House, 1998.

Please see the attached article. The photo is of a blood collection center on South Street in Philadelphia. Those familiar with Philadelphia might consider the address of the center as an area they'd rather not be after dark...

Now, a few words on the "archive". First, I hope everyone enjoyed the 1st email I sent featuring the 1960 NY Times article examining the potential for peanuts as a remedy for hemophilia. I can provide the article to all those that I've added to my list in the last week. Based on feedback I received from the community, I'd like to add a few thoughts on the use of this "archive" and future mailings. First, in an effort to maintain confidentiality of hemophilia community members, all future correspondance will be sent to "undisclosed recipients". Additionally, I must discourage the use of "reply to all" when commenting on the content of the emails, as this has the potential to rapidly cram everyone's inboxes with unsolicited email. As I mentioned previously, a webpage is being developed on this historical material on which it can be displayed to the community at their convenience. For those on this list who are themselves, hemophiliacs, we'll be posting the material and inviting comment on it through the "Blood Brotherhood" web board which is available on HFA's website at: www.hemophiliafed.org. Click on the Blood Brotherhood link. A thread on the "archive" has already been started on the page on which we can post comments (the Blood Brotherhood page is available only to community members and an account must be set up and approved by the moderators). I'll limit the distribution of these emails to no more than one per week and will try to present the material as objectively and honestly as possible. I will strive to be considerate and respectful of all our community members regarding the emails, website, and BBs' bulletin board, by not engaging in an excess of personal opinions. Some of the archival material relates to a very painful and divisive era for our community and I don't wish to reignite any of the controversy, political invective, or religious proselytizing that webboards of this type have occasionally fallen victim to in the past. I welcome feedback from our community on the "archive" and the method by which we will be distributing it. I will naturally honor all requests to be added to, or removed from the list. Again, I wish to be respecful and considerate of eveyone in our bleeding disorders community and sincerely hope that this little effort will help to preserve our history and pass it on to the next gereration(s). Vol. 3 will be mailed on April 8th and will be a brief review accompanied by memorial videos of the life of Ryan White and his incalculable impact on the hemophilia and HIV/AIDS communities. I hope you enjoy the "archive" mailings.

Your brother-in-blood,

Barry Haarde