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

COTT News, Advisory Committee Votes

Advisory Committee Votes to Retain Current Blood Donor Bans. The federal Department of Health and Human Services' Advisory Committee On Blood Safety and Availability (ACBSA) voted 9 to 6 on June 11th to make no change in the current deferral policy banning men who have sex with another man, even once, since 1977 from ever donating blood.  The Committee in addition proposed a research agenda of studies to be undertaken, both to shed further light on reviews of the several deferral bans, and to undergird these and other efforts to increase the safety of the blood supply. more.

For example, the ACBSA focused on the risks of unknown pathogens, the need for more data regarding high HIV transmission rates, and improving earlier awareness of emergent pathogens. COTT thanks Dr. Holmberg, Secretary of the Committee and Acting Chair for this meeting, for a well run and productive meeting inclusive of a wide range of perspectives, including the end users. We would also like to thank our friends at Gay Mens Health Crisis and commend them for a job well done before the ACBSA.

Originally published on 06-09-2010