Keep COTT Alive!

From the beginning, COTT’s guiding philosophy has been, Action=Life. The perspective is ongoing as COTT moves into its third decade as a grass-roots advocacy, support and policy organization serving the hemophilia and larger bleeding disorders communities. We are one of the few community advocacy organizations who do not accept support of any kind from the manufacturers of blood products, drugs or medical devices. This prohibition reflects our belief that conflict of interest played a key role in the AIDS/Blood epidemic that devastated the hemophilia community in the 1980s.

The survival of COTT is imperative if we are to continue to have an independent community voices participating in the regulatory structure as full stakeholders and partners. Your support is critical to our continued ground breaking work in blood safety and in the significant impact of trauma associated psychosocial challenges such as depression and Post Traumatic Stress Disorder, which our community members confront on a daily basis.

What can you do? Plenty. Send COTT a donation, by check in the mail or by clicking on "Donate" on the home page of our website, All amounts are welcome. Then talk to friends, neighbors, relatives about blood safety and ask them to donate with you.

Click here to download the latest issue of the COTT Washington Update, volume 14, number 4.

Blood Products Advisory Committee

COTT was pleased to learn that Corey Dubin, President and Board Chair of COTT, has been appointed again to the consumer representative seat on the FDA's Blood Products Advisory Committee (BPAC). Corey was originally appointed to a term on the committee in 1995, just after the Institute of Medicine's report HIV and the Blood Supply: An Analysis of Crisis Decisionmaking -- calling for increased consumer voice on committees such as this one.

It was then-FDA Commissioner David Kessler who specifically instructed the committee's staff secretary to declare a consumer seat and place Mr. Dubin in it. His service there -- despite much early skepticism by the academic and industry-linked other members -- paved the way for all subsequent consumer representation, on BPAC and also on the Advisory Committee on Blood Safety and Availability, in the DHHS Office of the Secretary (on which Corey Dubin has also served).

For the second year in a row, COTT has served on the FDA committee to review nominations for Consumer Representative seats on all FDA Advisory Committees.

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:,,20121879,00.html


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

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.