This week's AIDS Research Community Handbook Article is now online:

How to Quickly (and Critically) Read a Protocol
http://www.researchadvocates.org/article014.htm

One of the challenges of being a community advisory board member is learning how
to critically review a protocol from a community perspective. These suggestions
will help you focus on the most critical areas of the protocols you will be
reading and save you time.

Thanks to Jeffrey Schouten, for letting me re-print this piece.

As always please let me know what's going on at your local CAB and how I can
help.  And if there is anything you'd like to see me put up on the website, let
me know.

Best,

David Mariner

PS: there is one typo in the pdf version I will fix this week, the website for
aidsinfo is aidsinfo.nih.gov (not org)



DAVID MARINER
Silver Spring Office
Phone (301) 628-3390 | Fax: (301) 628-3306
dmariner@...

Washington DC Office
Phone (202) 797-4424 | Fax: (202) 797-4430
dmariner@...

Home
Phone (301) 588-3645 | Mobile (301) 437 2309
david@...

A fo ben, bid bont
He who would be head let him be a bridge
Welsh Proverb


_____________________________________________________________
Get email for your site ---> http://www.everyone.net


_____________________________________________________________
Get email for your site ---> http://www.everyone.net

Hey ZA - I'll get you more info about the Africa Trial - feel free to
contact me off-list ... david(at)temenos(dot)net ... in the meantime,
thought you all would find this article of interest.

July 17, 2005

Belated Charge Ignites Furor Over AIDS Drug Trial
New York Times
By JANNY SCOTT and LESLIE KAUFMAN

It was seen as one of the great successes of AIDS treatment. In the
late 1980's and early 1990's, hundreds of children in New York City
were dying of AIDS. The only approved drugs were for adults, and many
of the patients were foster children. So doctors obtained permission
to include foster children in what they regarded as promising drug
trials.

By 2000, the number of children under 20 who died of AIDS in the city
that year dropped to 13 from more than 100 per year less than a
decade before.

But now, just as the trials are receding into history, they are
coming under intense scrutiny. A federal agency is investigating
whether guidelines for including foster children in trials were
violated. The city's child welfare administration has opened an
independent inquiry into whether children were harmed.

And when the head of the child welfare system testified about the
trials at a City Council hearing in May, angry spectators shouted him
down.

All this is happening despite the fact that there is little evidence
that the trials were anything but a medical success. Most of the
questions have arisen from a single account of abuse allegations -
given by a single writer about people not identified by real names,
backed up with no official documentation as supporting proof, and put
out on the Internet in early 2004 after the author was unable to get
the story published anywhere else.

The story accused doctors of brutally experimenting on foster
children, most of them black, Latino or poor. It said they had
poisoned them with toxic drugs, sometimes against their parents' will
and without even being certain they were sick.

The charges jumped from Web site to Web site, then into The New York
Post and into a documentary shown on the BBC. The documentary alarmed
black civil rights activists and City Council members, who charged
racism.

Physicians and federal health officials involved in the trials have
strongly defended their work. They say hundreds, perhaps thousands,
of children benefited; many of those were children not in foster
care. To have withheld promising drugs from sick children just
because they were in foster care would have been inhumane, the
doctors say.

They say they obtained legal permission for the children's
participation, either from the biological parents or child welfare
officials, in all but a small number of cases. Numerous doctors
interviewed said they knew of no foster child who died as a result of
the trials.

"For those people who believe that these kids were harmed, I'd like
to say, 'What is the evidence?' " said Dr. William Borkowsky, a
pediatrician at Bellevue Hospital Center who took part in the
trials. "And better yet, 'Is there evidence that they were helped?'
There is very impressive evidence that they were helped."

Missing Records

The most thorough of the investigations will not be completed for
months. In the meantime, some critics' suspicions have been stoked by
admissions by city officials that their own records are inadequate or
missing. The city's child welfare agency, the Administration for
Children's Services, which has been through four changes in
administration since the trials began, cannot even say conclusively
how many foster children were involved.

More worrisome, the agency now expects that the current independent
investigation will find that there are inadequate records of parental
consent.

"We don't believe we have all the permissions by any means," said
Sharman Stein, director of communications for the children's services
agency.

Already, one federal agency, the Office of Human Research
Protections, found in June that one New York hospital had approved
four of the trials without gathering enough information about the
selection of foster children as subjects, or about the process for
getting their parents' or guardians' permission. It made no finding
as to whether any children were harmed or selected improperly.

Whatever the outcome, the controversy has already demonstrated the
power of a single person armed only with access to the Internet and
an incendiary story to put major institutions on the defensive. The
story taps a combustible mix of fears: the suspicions of some
activists that AIDS is not necessarily caused by H.I.V. and that AIDS
drugs do not necessarily help, and the belief of some black people
that the medical establishment does not always have their interests
at heart.

The controversy extends back to a bleak period in New York City
history when well over a hundred children a year were dying of AIDS,
most under the age of 5. As many as one in every five children
infected with H.I.V. were dead by 2, doctors now say; up to 50
percent were dead by 4.

There were no AIDS drugs approved for children in those years. The
first AIDS drug, AZT, was approved for adults in 1987. Babies were
being abandoned in hospitals, their mothers unable to care for them
and with no foster homes available. About 40 percent of the children
with H.I.V. were in foster care.

As a result, pediatricians began pressing pharmaceutical companies to
let them try drugs shown to work in adults. "People were clamoring,
begging for access to any drug," said Dr. Borkowsky.

Trials began in the late 1980's. Pediatricians asked the city to
allow foster children to participate. "To deny these kids the
medications would have been a crime," said Dr. William B. Caspe,
chairman of pediatrics at Jacobi Medical Center in the
Bronx. "Because of what we did, we were able to keep them alive until
newer medications became available."

By 1989, the child welfare agency was developing rules for enrolling
large numbers of foster children in clinical trials. Carol Marcus,
the agency's lawyer in charge of that project, said that the agency
had acted slowly and carefully, aware of the need to protect a
particularly vulnerable population. In a recent interview, she said
that even then she was acutely aware that the agency could be accused
of racism and exploitation.

The guidelines required a panel of pediatricians to review all
pediatric AIDS trials being sponsored by the National Institutes of
Health, and to eliminate those in which there was no "prospect of
direct benefit" for each child. The agency required the consent of
the child's biological parent or, if no parent could be found,
written permission from the commissioner.

Ms. Marcus says that she now believes there could have been more
safeguards. The task of matching children to trials was left to each
child's physician. She said the agency, which had seen the number of
children in their care double in two years to 40,000, was too
understaffed to monitor how each child was doing. Nevertheless, she
remains proud of the agency's response to the crisis.

In 1990, under the city's first black mayor, David N. Dinkins, the
guidelines went into effect. They were being carried out by Barbara
J. Sabol, the city's first black commissioner of social services, and
by her deputy in charge of child welfare, Robert L. Little. Mr.
Little, a younger brother of Malcolm X, died in 1999, and Ms. Sabol
did not return phone calls to her office.

One center that took part in the trials was a small boarding home for
H.I.V.-infected foster children called Incarnation Children's Center,
the brainchild of Dr. Stephen W. Nicholas, now director of pediatrics
at Harlem Hospital Center. With as many as 24 infected children
abandoned in the hospital in 1988, the idea of finding them a home
outside the hospital came to him after a young patient greeted him
with, "Hi, Daddy."

Working with Columbia University and the Catholic Archdiocese of New
York, Dr. Nicholas became the medical director of Incarnation, on
Audubon Avenue in Washington Heights, which opened in 1989 and added
an outpatient clinic in 1992. Foster children there and elsewhere
were enrolled in trials - at first, trials of single drugs like AZT,
and later, of multiple-drug cocktails and protease inhibitors, which
by 1996 were helping turn AIDS into a manageable, if still chronic,
disease.

For 14 years, 90 percent of the children infected with H.I.V. in the
city, in foster care and not, participated in drug trials, according
to estimates by the child welfare administration. Gradually, fewer
children became infected and sick. Foster homes were found for many,
and many were adopted. In 2000, Incarnation became licensed as a
skilled nursing facility under the State Department of Health,
opening its doors to children not in foster care. In 2001, Dr.
Nicholas left for his current job at Harlem Hospital Center.

The story, however, does not end there.

In the summer of 2003, Incarnation was visited by Liam Scheff, a 34-
year-old, self-described "very independent journalist from the 'go
out and get the story, don't let the slammed door get in your way'
school of journalism" with a longtime interest in what he calls "the
other side" of AIDS.

Mr. Scheff had doubts about much of what was known about AIDS. He
doubted that H.I.V. was necessarily the cause. He doubted the seeming
certainty of an AIDS diagnosis. He doubted the reliability of the
H.I.V. test and the usefulness of AIDS drugs in part, he said,
because he knew H.I.V.-positive men who had remained healthy on a
macrobiotic diet.

Mr. Scheff said he had been put in touch with a New York woman who
said her two adopted children had been placed in Incarnation after
she had let them stop taking AIDS drugs she believed had made them
sick. So Mr. Scheff went to Incarnation, as a friend of the family.
He said he was horrified by what he saw.

Grim Allegations

In January 2004, he posted an article, "The House That AIDS Built,"
on indymedia.org, a Web site that describes itself as an outlet
for "radical, accurate and passionate tellings of truth." He chose
that approach after trying unsuccessfully to get the article
published. "I couldn't get anybody to touch it," he said.

The article made a series of gruesome claims: Among other things, Mr.
Scheff wrote that Incarnation had been holding children against their
parents' will, in some cases force-feeding them drugs "known to cause
genetic mutation, organ failure, bone marrow death, bodily
deformations." He wrote that two children had recently died.

The article came to the attention of Vera Hassner Sharav of the
Alliance for Human Research Protection, a group she said she had
founded to monitor "the underbelly of research" after her
schizophrenic son died of a reaction to an approved drug. After his
death, she said recently, she realized people must "stop thinking you
can trust the men in the white coats."

She added, "It's a business now."

Ms. Sharav forwarded Mr. Scheff's article to the 3,500 people she
said receive her e-mail "infomails" daily. She then looked into
Incarnation on the Internet. She came to suspect that children had
died there, and that this was what ended the trials and led to the
license change and Dr. Nicholas's departure. In March 2004, Ms.
Sharav filed a complaint with the federal Office for Human Research
Protections and with the Food and Drug Administration.

At the same time, The New York Post published several articles about
Incarnation under headlines like "AIDS Tots Used as Guinea Pigs."
Soon, an independent film director enlisted Mr. Scheff and Ms. Sharav
to help with a documentary, paid for and shown by the BBC,
entitled "The New York Experiment - Guinea Pig Kids."

The reports alarmed African-American activists and politicians in the
city. The accusations resonated in particular with Omowale Clay, a
leader of the December 12th Movement, a Brooklyn-based group that
campaigns for reparations for slavery, and acts as a watchdog group
for civil rights violations against blacks.

Mr. Clay said he had conducted his own research and concluded that
trials were done on black infants who did not even have H.I.V. He
offered no evidence of his claims.

"What we know already," he said, "is that 98 percent of the children
experimented on were black and Latino and that the fundamental basis
of why they chose those kids was racism. They have the arrogance to
say it was for their own good, but we know it was racism."

Last fall, Mr. Clay began showing the documentary film, which had
aired only on BBC, in churches, block association meetings and
private gatherings. He campaigned to make the child welfare agency's
records public.

At the same time, two Democratic city councilmen, Charles Barron of
Brooklyn and Bill Perkins of Manhattan, also were calling for Council
hearings and an investigation by the city.

In March, the child welfare agency handed its critics new ammunition.
It revised its count of the number of children in the trials, to 465
from 89, saying it had discovered an additional box of documents in
the basement.

The news prompted a new round of scrutiny. The child welfare agency
responded by hiring the Vera Institute of Justice, an independent
nonprofit research group, to conduct an in-depth investigation at an
initial cost of $1.5 million. The move hardly tamed the fury.

Demanding Answers

In May, the City Council held a hearing and a mostly black audience
booed John B. Mattingly, the child welfare commissioner, who had been
appointed in 2004, more than three years after the last foster child
was enrolled in the drug trials.

Councilman Barron invoked the specter of the infamous Tuskegee
experiments, in which black men with syphilis were studied for 40
years, beginning in 1932, but were neither treated nor told they had
the disease. Councilman Perkins warned, "This has deep racial
connotations."

After the Council hearing, the Black Equity Alliance, a group of
African-American leaders, started contacting the news media to demand
a better accounting by the city. Dr. Billy E. Jones, a former
president of the city's Health and Hospitals Corporation, who is
black, said, "Nobody who has the history that our community has, has
the luxury of not being concerned."

Pediatricians involved in the trials say they are mystified by the
onslaught. While powerful drugs do have side effects, many said, they
remembered no fatal reactions. At Incarnation, Dr. Nicholas said, no
child had died of a reaction and "no child ever had an unexpected
side effect."

He said that, with one exception, no children had been included in
the trials without "absolute proof" by advanced testing methods that
they were infected and not simply carrying their mother's antibodies.
He said the exception was a trial that proved that by giving AZT to
pregnant, infected women and then to their newborns in the first six
weeks of life it was possible to sharply reduce the rate of H.I.V.
transmission from mother to child. He called that study "the most
important clinical trial in the history of AIDS."

In response to the charge by some critics that hospitals should have
appointed independent guardians for each child, doctors said the
federal regulations require advocates only when a trial holds "no
prospect of direct benefit" for the child. Several said their
hospitals appointed advocates anyway.

"This isn't Tuskegee, it never was Tuskegee, it never will be
Tuskegee," Dr. Borkowsky said. "This is something that has been blown
totally out of proportion by, I think, people who are vying for
office and looking for something to get them into the news."

Columbia University Medical Center, which was found by federal
officials to have "failed to have obtain sufficient information" in
approving the participation of foster children in four trials, has
acknowledged what it called a need to improve "how information is
collected and decisions documented." But it said investigators had
not questioned the appropriateness of enrolling children, the care
they received, the research's value or the scientists' conduct.

As for the city's child services agency, officials say that in all
the years since the drug trials, no family has sued or come to them
with evidence of mistreatment. Staff members, past and present,
expressed pride in what they had done; the worst thing that could
have happened, they said, would have been for the agency to have done
nothing.

Mr. Mattingly, the agency's commissioner, said, "I would far rather
be having this dialogue than one in which we tried to explain why my
predecessors - confronted by a medical epidemic of unforeseen
magnitude - did not do everything possible to get these children
access to promising medication because they were in foster care. Or
because the rules and regulations designed to protect their interests
were so complicated that no children got the lifesaving help."

Hi, everyone

My name is Terry. I'm a 49 year old gay man, living in Chicago. I got
an invitation to join this fine group. I was a volunteer for the Vax-
Gen HIV vaccine trials a couple of years ago.

This will be such a nice resource of information. Thank you for
extending me the invitation to join.

Terry

Salutations all:

This is a most interesting, not to say disconcerting news item.

Does anyone know where I may obtain the full Report, please?

I am especially interested in the reference from the post in the
Group: ".......In a series of recent stories, the AP has reported: One
of NIH's AIDS study in Africa violated federal safety regulations.......".

I am brand-new to the group, however am already finding it enormously
useful. Thank you for the invitation to join. Much appreciated.

Regards.

This week's AIDS Research Community Handbook Article is now online:

Joining a Community Advisory Board
http://www.researchadvocates.org/article008.htm

This is a great article to share with folks who don't know anything
about HIV/AIDS Research Community Advisory Boards (CABS).  I wrote
this piece a while back for positivewords.com, and a lot of local
AIDS service organizations included it in their newsletters.  You are
welcome to do the same.

As always, please feel free to send me ideas, suggestions, and
submissions for the site.

Best,

David Mariner


DAVID MARINER
Silver Spring Office
Phone (301) 628-3390 | Fax: (301) 628-3306
dmariner@...

Washington DC Office
Phone (202) 797-4424 | Fax: (202) 797-4430
dmariner@...

Home
Phone (301) 588-3645 | Mobile (301) 437 2309
david@...

A fo ben, bid bont
He who would be head let him be a bridge
Welsh Proverb

AP: Review Finds AIDS Agency 'Troubled'

http://abcnews.go.com/Health/wireStory?id=906064

AP: Review Substantiates Concerns Over Inappropriate Conduct at U.S.
AIDS Research Agency

By JOHN SOLOMON Associated Press Writer

WASHINGTON Jul 3, 2005 — The government's AIDS research agency "is a
troubled organization" and its managers have engaged in unnecessary
feuding, sexually explicit language and other inappropriate conduct
that hampers its global fight against the disease, an internal review
found.

The review for the National Institutes of Health director's office,
obtained by The Associated Press, substantiates many of the concerns
that whistle-blower Dr. Jonathan Fishbein raised about the agency's
AIDS research division and its senior managers.

The division suffers from "turf battles and rivalries between
physicians and Ph.D scientists" and the situation has been "rife for
too long," the report concluded.

Nonetheless, the NIH formally fired Fishbein on Friday, over the
objections of several members of Congress. The top Republican and
Democrat on the Senate Finance Committee are protesting, saying the
firing was an example of whistle-blower punishment.

"Retaliation against an employee for reporting misconduct or voicing
concerns is unacceptable, illegal and violates the Whistleblower
Protection Act," Sens. Charles Grassley, R-Iowa, and Max Baucus, D-
Mont., wrote the NIH late last week.

"Moreover, it would have a chilling effect on other NIH employees who
might makes truthful but critical comments about the NIH," the
senators said.

Citing personnel privacy, NIH officials declined to address the
senators' letter or Fishbein's termination, except to say that his
last day was Friday. In the past, NIH officials have said they were
terminating Fishbein for poor performance.

Fishbein, an accomplished private sector safety expert, was hired by
the NIH in 2003 to improve the safety of its AIDS research.

He alleges that he was let go because he raised concerns about
several studies and filed a formal complaint against one of the
division's managers alleging sexual harassment and hostile workplace.

In a series of recent stories, the AP has reported:

One of NIH's AIDS study in Africa violated federal safety
regulations.

Senior NIH managers engaged in sexually explicit pranks and sent
expletive-laced e-mails to subordinates.

NIH-funded researchers used foster children to test AIDS drugs since
the late 1980s.

An internal report, written on Aug. 9, 2004, by a special adviser to
NIH chief Elias A. Zerhouni but never made public, raised concerns
that the NIH's efforts to fire Fishbein at the very least gave
the "appearance of reprisal."

The report says no documentation was ever provided to Fishbein
suggesting poor performance until after he complained about the
safety in one sensitive AIDS study and filed a formal complaint
alleging that the division's deputy director was acting
unprofessionally with subordinates.

The report said after formally complaining about conduct of the
deputy director, Dr. Jonathan Kagan, Fishbein was inexplicably forced
to begin reporting to Kagan, who then went ahead with efforts to fire
Fishbein.

The report said Kagan and the division's director, Dr. Edmund
Tramont, acknowledged that Kagan "uses sexually explicit and colorful
language, saying that no one ever complained until" Fishbein did.

The report broadly condemns the NIH's Division of AIDS.

"It is clear that DAIDS is a troubled organization," the report
concluded, saying the Fishbein case "is clearly a sketch of a deeper
issue."

"To have the senior management … behave in this manner, spend
incredible amounts of time feuding, and writing numerous long e-mails
while seemingly unaware of the need for appropriate behavior decorum
and enforcement of good management practices and the rules of
supervision and concerns about appearance of reprisal clearly
indicate a serious problem," the report said.

Fishbein's lawyer, Stephen M. Kohn, said Friday he had not seen the
report obtained by the AP, but he hailed its conclusions.

"NIH's internal admissions are unprecedented and damning. Dr.
Fishbein was right. NIH must fix its troubled management and stop
harassing the whistle-blowers," Kohn said.

The report, however, also criticized Fishbein, citing some of his
supervisors' statements that he did not take enough time to adapt to
the "culture" of the AIDS division before making sweeping changes to
improve the agency's research safety.

"It seems apparent that both sides behaved badly, that a new senior
employee did not orient himself about the division and that the most
senior people engaged in inappropriate behavior," the report said.

The report urged the NIH to require sensitivity training for its
senior managers and provide instruction about "inappropriate
personnel procedures."


On the Net:

National Institutes of Health: http://www.nih.gov

Hi everyone,

This week's AIDS Research Community Handbook Article is now online:

Microbicide Research
http://www.researchadvocates.org/article007.htm

Investment in Microbicide research and development has grown significantly in
the past few years. In 2000, public and philanthropic investment in vaccine
research totaled $66 million. In 2004, that number rose to $140 million.  I hope
you'll use this week's handout to learn more about microbicides, or to start a
discussion about microbicide research in your local community advisory board.

One of the great things about the internet is that it's relatively easy to
revise pieces.  Just so you know, I'm sending this out to get feedback from some
different microbicide advocates I know, so you may see a slightly revised
version of this handout online in the future.

As always, please feel free to send me ideas, suggestions, and submissions for
the site.

NEXT WEEK: Why racial & ethnic diversity in clinical trials matters

Best,

David Mariner


DAVID MARINER
Silver Spring Office
Phone (301) 628-3390 | Fax: (301) 628-3306
dmariner@...

Washington DC Office
Phone (202) 797-4424 | Fax: (202) 797-4430
dmariner@...

Home
Phone (301) 588-3645 | Mobile (301) 437 2309
david@...

A fo ben, bid bont
He who would be head let him be a bridge
Welsh Proverb


_____________________________________________________________
Get email for your site ---> http://www.everyone.net

Colleagues, associates and friends,

Attached is a paper published in the July 2005 issue of the Journal of the
National Medical Association entitled "Focusing “Down Low”: Bisexual Black Men,
HIV Risk and Heterosexual Transmission".

Let me say, at the outset, that I realize that some receiving this email are on
listservs which are solely dedicated to HIV treatment.  That said, I will also
say that the issues surrounding the current misinformed preoccupation with the
"Down Low" (DL), in the Black community, as it relates to the spread of HIV (and
ancillary issues) warrant this noted exception and are sufficient to request
your assistance in distributing this very excellent, timely and much warranted
analysis of the DL controversy to any person or health-based organization
targeting the Black community with whom or which you work, with whom or which
you may otherwise have association or whom or which you are simply familiar.

This review of the literature is the best I have ever seen at analyzing and
distilling what we do and do not know about the DL and on what, and where, we
must concentrate our evidence-based efforts, in part, with respect to the
transmission of HIV in the Black community.

The researchers involved are part of an extremely small constellation of
researchers doing the required discrete research with respect to Black MSM and
an even smaller constellation who possess the intuitive ablilities to intrepret
qualitative findings vis-a-vis the indices which constitutute the research
agenda as suggested by these authors.

Greg Millet currently of the Epidemiology Branch of Division of HIVAIDS
Prevention (DHAP)
at the CDC is the lead author.  Mr. Millett is listed for correspondence and
reprints.

I would also point out that the second author is Dr. David Malebranche.  Dr.
Malebranche is an Assistant Professor and Clinical Investigator at Emory
University's School of Medicine and has been at the vanguard of those dedicated
to raising the anectodotal, simplistic, hyperbolic chatterings about the
bogeyman, which has surfaced in the last few years vis-a-vis Black MSM, to a
rationale discourse focused on identifying and programming the multi-facted
surrogate drivers of HIV in the Black community.  His efforts are particulary
relevant as regards the current empirical abyss vis-a-vis Black heterosexual
tranmission of HIV in the United States.

Should you have questions, or be interested in participating in the rationale
aspects of that discourse, I would encourage engaging Dr Malebranche.  Dr.
Malebranche may be reached at dmalebr@....

Thanks in advance for your assistance.

Steve Oxendine
San Francisco














__________________________________________________
Do You Yahoo!?
Tired of spam?  Yahoo! Mail has the best spam protection around
http://mail.yahoo.com

[Non-text portions of this message have been removed]

Hi everyone,

This week's AIDS Research Community Handbook Article is now online:

Mentoring 101
http://www.researchadvocates.org/article006.htm

As community members, most of what we learn about HIV/AIDS research doesn’t
happen in a classroom or training.  We learn as we go, and more often than not,
we learn from each other.  Mentoring is a powerful tool to grow the number of
informed and active community members in your local community advisory board,
and perhaps one of the most important things we can do to strengthen our
collective voice.

Use this handout in your local CAB (or other group) to start a conversation
about mentoring.

* Are there new members of your group that could benefit from a mentor?

* Is there an upcoming conference or scientific meeting where new folks folks
would benefit from being paired with a more experiences 'buddy'?

* Have you taken time to thank the mentors in your life?  Is it easy for you to
ask for help when you need it?

If you need help setting up a mentoring program, drop me a line, and let me
know.  And as always, let me know what's going on in your CAB and what topics
you'd like to see covered in the future.

Best - David


NEXT WEEK: Microbicides



DAVID MARINER
Silver Spring Office
Phone (301) 628-3390 | Fax: (301) 628-3306
dmariner@...

Washington DC Office
Phone (202) 797-4424 | Fax: (202) 797-4430
dmariner@...

Home
Phone (301) 588-3645 | Mobile (301) 437 2309
david@...

A fo ben, bid bont
He who would be head let him be a bridge
Welsh Proverb


_____________________________________________________________
Get email for your site ---> http://www.everyone.net

Hi everyone,

This week's AIDS Research Community Handbook Article is now online at:

Seniors & HIV/AIDS Clinical Trials
http://www.researchadvocates.org/article005.htm

You can download the PDF and share with folks at your local CAB meetings. Also,
if you are having successes with your local CAB, let me know about it.  If you
have articles, or tips, or handouts, or even pictures from your local CAB that
you would like to see posted on the www.researchadvocates.org website, send them
to david@....

Thanks!

David Mariner

DAVID MARINER
Silver Spring Office
Phone (301) 628-3390 | Fax: (301) 628-3306
dmariner@...

Washington DC Office
Phone (202) 797-4424 | Fax: (202) 797-4430
dmariner@...

Home
Phone (301) 588-3645 | Mobile (301) 437 2309
david@...

A fo ben, bid bont
He who would be head let him be a bridge
Welsh Proverb



_____________________________________________________________
Get email for your site ---> http://www.everyone.net

Hi everyone,

The third article is now online at:

Women & HIV/AIDS Clinical Trials
http://www.researchadvocates.org/article004.htm

You can download the PDF and share with folks at your local CAB meetings. Hope
you find this helpful. As always, feel free to drop me a line and let me know
whatinfo or support you could use.

Best - David


DAVID MARINER
Silver Spring Office
Phone (301) 628-3390 | Fax: (301) 628-3306
dmariner@...

Washington DC Office
Phone (202) 797-4424 | Fax: (202) 797-4430
dmariner@...

Home
Phone (301) 588-3645 | Mobile (301) 437 2309
david@...

A fo ben, bid bont
He who would be head let him be a bridge
Welsh Proverb


_____________________________________________________________
Get email for your site ---> http://www.everyone.net

Hi everyone,

The third article is now online at:

HIV/AIDS Reearch and People of Color
http://www.researchadvocates.org/article003.htm

You can download the PDF and share with folks at your local CAB meetings.  This
is a complicated issue, of course, and it would be impossible to cover
everything in a short two page handout.  I think this is a good starting point,
however, for having a conversation at your local cab.

Hope you find this helpful. Feel free to drop me a line and let me know what
info or support you could use.

Best - David


DAVID MARINER
Silver Spring Office
Phone (301) 628-3390 | Fax: (301) 628-3306
dmariner@...

Washington DC Office
Phone (202) 797-4424 | Fax: (202) 797-4430
dmariner@...

Home
Phone (301) 588-3645 | Mobile (301) 437 2309
david@...

A fo ben, bid bont
He who would be head let him be a bridge
Welsh Proverb



_____________________________________________________________
Get email for your site ---> http://www.everyone.net

Hi everyone,

The second article is now online at:

http://www.researchadvocates.org/article002.htm

You can download the PDF and share with folks at your local CAB meetings.

Hope you find this helpful.  Feel free to drop me a line and let me know what
info or support you could use.  Next week I'm planning  to put the 'People of
Color & HIV/AIDS Research' fact sheet online.

Best - David


DAVID MARINER
Silver Spring Office
Phone (301) 628-3390 | Fax: (301) 628-3306
dmariner@...

Washington DC Office
Phone (202) 797-4424 | Fax: (202) 797-4430
dmariner@...

Home
Phone (301) 588-3645 | Mobile (301) 437 2309
david@...

A fo ben, bid bont
He who would be head let him be a bridge
Welsh Proverb

Hi all,

As most of you know I just launched the website http://www.researchadvocates.org
and I plan to be adding to it piece by piece over the summer.

Here is the first of what I hope will be many useful weekly handouts.

Getting Started: Being a Community Advocate.

The PDF file is attached.  If you are on digest mode or don't get the attachment
it is also on the website at:

http://www.researchadvocates.org




DAVID MARINER
Silver Spring Office
Phone (301) 628-3390 | Fax: (301) 628-3306
dmariner@...

Washington DC Office
Phone (202) 797-4424 | Fax: (202) 797-4430
dmariner@...

Home
Phone (301) 588-3645 | Mobile (301) 437 2309
david@...

A fo ben, bid bont
He who would be head let him be a bridge
Welsh Proverb


[Non-text portions of this message have been removed]

AIDS research carries stench of past studies
May 16, 2005

http://www.newsadvance.com/servlet/Satellite?
pagename=LNA/MGArticle/LNA_BasicArticle&c=MGArticle&cid=1031782740191&
path=

After the U.S. Public Health Service was exposed for conducting a
hideous experiment between 1932 and 1972 on 399 black men in the late
stages of syphilis, it would seem the government might be a little
more careful about using humans as guinea pigs.

Now word comes that the National Institutes of Health has been doing
AIDS drugs research on foster children for the past two decades,
often without requiring any advocates on their behalf.

What do the two experiments have in common? The black men were mostly
illiterate sharecroppers. The foster children were mostly poor and
minorities.

No wonder distrust in the government runs so deep. No wonder a 1990
survey found that 10 percent of blacks believed the U.S. government
created AIDS as a plot to exterminate blacks and another 20 percent
couldn't rule out the possibility that might be true.

In 1972, a reporter for the Washington Star broke the story about the
infamous syphilis experiments, which news anchor Harry Reasoner
described as using "human beings as laboratory animals in a long and
inefficient study of how long it takes syphilis to kill someone."

Now The Associated Press has uncovered a 20-year study on how
effective - or dangerous - AIDS drugs are on children with the
disease. The drugs were known to have serious side effects in adults
and the safety for children was unknown.

The difference between the two experiments - on its face - is intent.
The Tuskegee syphilis experiment was designed to watch how disease
killed a minority population. The AIDS experiment was meant to help
children with a disease. Indeed, only 5 to 10 percent of the 13,878
children enrolled in the pediatric AIDS studies were foster children.

But the underlying problem remains unchanged. Researchers tested
vulnerable populations who were unable to defend themselves or
understand the consequences of the "research."

In the latter case, the children, including infants, were in foster
care. Everyone knows that children often bounce from one foster
family to another. Care is hardly consistent.

These children should have had unbiased advocates appointed who could
track the children's progression throughout the research - regardless
of whether their foster parents were truly engaged or ever changing.

The researchers are quick to point out that many of these children
would have gotten no treatment, and instead got some of the best
available. Sometimes.

In one study, researchers reported a "disturbing" higher death rate
among children who took higher doses of dapsone, a drug designed to
prevent pneumonia. Some children had to be taken off the drug because
of "serious toxicity." Death rates and blood toxicity were
significantly higher in children who took the medicine daily, rather
than weekly.

At least 10 children died from a variety of causes, including four
from blood poisoning, and researchers said they were unable to
determine a safe, useful dose. They said the deaths didn't appear to
be "directly attributable" to dapsone, but nonetheless
were "disturbing."

Disturbing hardly describes this kind of research. The U.S. Office
for Human Research Protections, created after the Tuskegee syphilis
experiment, is investigating the AIDS research in children.

By now, the government should know better than to permit any research
that has even a whiff of exploitation about it.