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

Washington Update, February 2012, Vol.12, No.2

The basic groundwork: Republicans succeeded in taking the majority of seats in the House; the Senate will remain in Democratic hands next year, but by a much narrower count than currently. A single defection, or serious illness or death, or a combination, can change things drastically.

Jockeying for leadership positions in both chambers, but especially in the House with a change in majority, began only days after the election results were in. The Senate kept Harry Reid (D-NV) as Majority Leader, and Mitch McConnell (R-KY) as Minority Leader. In the House, there really were no contenders for the top spot; John Boehner (R-OH) will be the new Speaker. Eric Cantor (R-VA) is in line to become the House Majority Leader under Boehner. Minority leadership was clarified when Nancy Pelosi (D-CA) indicated that she would take the top Minority spot, Minority Leader. Steny Hoyer (D-MD) had an unexpected fight with Jim Clyburn (D-SC) for the number two Minority position, Minority Whip; it was such a dead heat that Pelosi created a new position, Assistant to the Speaker, for Clyburn, high-ranking enough to appease him and allowing Hoyer the Whip position, keeping the peace.

Individual committee chairmanships have largely become finalized. In the Senate, Health will be chaired by Mike Enzi (WY), current Ranking Member (senior member of the Minority side of the Committee). In the last Congress, Enzi was author of a bill (which while unsuccessful spawned many lookalikes) that would permit health insurers to ignore state mandates requiring care for special groups. As the Senate Health Insurance Reform legislation passed through that Committee despite hundreds of amendments attempting to blunt it, he will be well positioned to revive some of them or more stringent ones as the Republican Party works to keep its vow to undo last spring‟s Health Insurance Reform legislation.

Senate Appropriations is likely to go to Sen. Kit Bond (MO); the Health Appropriations Subcommittee Chair, like most all other Subcommittees, will be named by the new Chair.

In the House, the Energy & Commerce Committee will be chaired by Fred Upton (MI). The Health Subcommittee Chair will be Joe Pitts (PA). Upton has stated his intention to “Repeal Obamacare." We have our work cut out for us.

The Chairmanship of Appropriations, a key player in Republican budget-cutting agendas, will not go to be Jerry Lewis (CA), the current Ranking, but to Hal Rogers (KY), third in line. Some have expressed surprise at this appointment, as Rogers has over his 30 years in the House earned, through securing numerous „earmarks‟ or specific targeting of funds to benefit his district, come to be known on the Hill as "Mr. Pork." At a minimum his record seems at odds with the larger Republican theme of spending reduction. As in the Senate, the appointment of the Health Subcommittee of Appropriations must await Rogers‟ installation.

The House Government Reform and Oversight Committee, used very successfully by past Chairman Henry Waxman (D-CA) to ferret out government wrongdoing, will almost certainly be taken by Rep. Darrel Issa (R-CA), who has announced plans to have so many and so thorough hearings on the Health Insurance Reform legislation that it will actually impede the agencies‟ ability to implement its many components on schedule.

The House Committee on Energy and Commerce lost three senior Democrats, Rick Boucher (VA), 3rd in seniority, Bart Gordon, (TN) fifth, and Bart Stupak (MI), eighth, as well as two other members lower down on the list. However, of these five, the Subcommittee on Health lost only two – Gordon and Zachary Space (OH). Republican losses, actually, were comparable: four senior members of the full committee, with three of them vacating senior positions on the Health Subcommittee. Key committees for our work will still have many familiar Democrat faces on them, but learning and working with the new members on all four of these committees – and educating them about our community and its needs - will be the order of business on the Hill for the next few months.


Congress has bee productive since the elections, but almost entirely in the week before its Christmas adjournment. A lame-duck Congress with such extensive party realignments, for most of the six-week session it saw no resolution to constantly shifting currents of gridlock caused by rigid positions as both parties tested their powers in the post-election period. It was not a time of compromises and moving forward the large amount of serious legislation on its plate. This was unfortunate considering the large amount of legislation on its plate. These included tax cuts, government funding, immigration, food safety, and numerous others.

In addition, in what has been viewed as an historical event, both the House and the Senate voted to overturn the longstanding policy of „Don‟t Ask, Don‟t Tell‟ vis-à-vis service in the military by members of the gay and lesbian community. COTT hails this important step by the Congress; this policy had no place in an enlightened society. We congratulate the many gay and lesbian groups that worked so hard to overturn this policy.

The entire federal funding for the fiscal year that began several months ago is usually accomplished via committee decisions over the different components of government operations – in the Spring before the fiscal year begins. This year, as these votes sometimes never took place, leadership bundled them all into one „Omnibus‟ bill, as has been done often in the past. Action on it was delayed until after the fiscal year began on October 1, then until after the elections, then into early December when it was surprisingly voted down due to the large number of special interest provisions ("earmarks‟) in it and finally until the last day before the federal government would shut down. The result? Approval of continued operations until March, but only at the same funding levels as last year.

Another matter: passage of a bill to allow adult children of illegal immigrants to access programs otherwise requiring proof of citizenship or other legal status. This bill, known as the DREAM Act, gained more and more support but then failed to secure enough votes to be likely to pass if brought up for a vote.

The nuclear disarmament pact with Russia requires renewal, but a strong announcement to the President by a key Senate Republican that renewing it, the Strategic Arms Reduction Treaty (START), will face opposition in the Senate, another example of muscle-flexing by members testing out new power behind them. However, again as with other key bills, it did pass in the last week before adjournment.

Another bill: a Food Safety bill, greatly increasing the funding and powers available to the FDA in the wake of a variety of nationwide food recalls in recent years, was drafted in the Senate, received preliminary votes, and then languished for 17 months in Congress, mostly in the hopes it could be tied to a fiscal bill that never passed. Again, passing readily in the endgame, it was a Christmas present to FDA.

The biggest wrestling match that has gone on behind Hill doors has been over the revocation of the tax cuts passed early in the second Bush Administration, which were aimed at business as a way of creating jobs and boosting the economy – but now just look like more benefits for the rich, while the rest suffer 10% unemployment as the recession continues. Democrats do NOT want this question it to carry over into next year‟s Republican-controlled House agenda. A Presidential negotiation directly with the Republican leadership in early December resulted in a compromise proposal, but the House Democratic caucus, in part offended to be excluded from the President‟s direct outreach to the other party, rejected the compromise. After a cooling off period, and thanks to a number of non-tax related benefits the President succeed in making part of the compromise, it passed.

The months of November and December have brought us in Washington some high theater. It was certainly the largest mid-term change in decades. That in turn has contributed to the theater: the new House majority, flexing its muscle, declaring, essentially, watch out Mr. President, your days are numbered.

The flexing of muscle has occurred on both sides of the aisle, in both chambers of Congress, as the survivors of the election realize their numbers are largely still intact, and the leaders of the party that will be in power but whose legion of freshmen – new, untrained, no-seniority freshmen, yet to be sworn in, have not yet been able to wield the clout they look forward to in a few short weeks.

Note: In addition to posting the COTT Washington Update on our website, www.cott1.org, we can send it directly if desired. Request at cott-dc@earthlink.net

VOLUME 12 NUMBER 4 - 2010

Welcome to COTT

COTT is committed to working within the context of broad collaborative efforts and coalition building with a wide array of communities, agencies, organizations, and individuals who seek control individual over their own health care. A central theme of the COTT is the development and implementation of programmatic initiatives which illuminate an empowerment road map for the diverse communities impacted by HIV/AIDS and other chronic diseases/disorders. We believe that health is a right and not a privilege and seek to create a world where the health and well being of all peoples replaces profit as the priority.

Rachel Warner Scholarship Program

COTT's Rachel Warner Scholarship program will not be available for the foreseeable future. We apologize for any inconvenience this may create, and look forward to re-instating the program as soon as possible in future years.

COTT News, Joint Statement

Joint Statement on Addressing the MSM Blood Ban by Groups Representing People Living with Hemophilia, Gay Men and People Living with HIV/AIDS. The Department of Health & Human Services, Advisory Committee On Blood Safety and Availability will consider June 11 revision of the current Food and Drug Administration (FDA) policy recommending that men who have sex with another man (MSM) even one time since 1977 should be deferred indefinitely from donating blood.

In the following joint letter advocacy organizations representing both the Gay & Lesbian Communities and the Plasma User Communities have signed on to demonstrate their past and ongoing ability to work together on issues surrounding the safety of our nation’s blood and the most efficient and effective way to ensure the overall safety of this precious national resource, blood:

As the Department of Health and Human Services' Advisory Committee on Blood Safety and Availability (ACBSA) prepares to evaluate the longstanding deferral of all men who have had sex with men (MSM) from donating blood, the organizations listed below wish to clarify a recently encountered misperception.  Advocates invested in any change of such a policy report a perceived disconnect between the positions of leading gay rights and hemophilia representatives. We reject this notion.

The communities have more in common than current discourse reflects.  Both gay men and people with hemophilia have been disproportionately impacted by the HIV epidemic. Critical advancements in HIV prevention, treatment, and research can be linked directly to the years of successful advocacy by both communities.  For most of the past quarter century, these two communities have worked toward shared goals, including caring for people living with HIV and preventing the virus’s spread.

The organizations listed below continue to share a strong commitment to the safety of our nation's blood supply and it is with this in mind that we urge the ACBSA to recommend any scientific research that is necessary to allow for the thoughtful consideration of alternative policies regarding donor deferral. We look forward to working with the Advisory Committee, and the broader federal government, to critically examine and evaluate alternative polices for MSM blood donors that maintain or enhance the safety of blood and blood products.

AIDS Action Council AmFAR Committee of Ten Thousand Gay Men's Health Crisis Hemophilia Federation of America Human RIghts Campaign National Gay and Lesbian Task Force National Hemophilia Foundation World Federation of Hemophilia

Originally published on 06-19-2008

Treatment and Care, Federal and NYS Advocacy Online

by Audrey Benenati

If you are a bleeder or loved one of a bleeder, please fan us on Facebook and participate in the online advocacy activities. It only takes a few minutes and your help is really needed.  You can do this anonymously if you wish. Please take a moment to suggest the page to friends too. Stay tuned for more later.

Bleeders and family/significant others only, please. Thanks for your help!


If you are unwilling to join Facebook, you can go directly to the first petition at the link below.  Please note that research has shown petitions with just signatures are ineffective.  Please make sure to use the comment box to add your own statements--that is very important.  Don't worry about being articulate.  Just speak from the heart.

This petition is about HTC care, thus my choice to post it in the HTC forum here. http://www.thepetitionsite.com/1/nybleedingdisordersadvocacy1

Originally posted on 02/21/2010