Sunday, November 1, 2009

A History of Prejudice and Viruses

One key point, raised over and over at the October 29-30, 2009 meeting of the United States Department of Health and Human Services (DHHS) Chronic Fatigue Syndrome (CFS) Scientific Advisory Meeting was a reference to journalist Randy Shilts book "The Band Played On." It is a story of prejudice against patients that prevented the public and others from looking closely at a virulent, and uncontrolled virus that ravaged countless lives.
Whether XMRV is only found in the United States or whether like HIV it
originated in one geographic location and spread from there has yet to be
scientifically determined. The mode of transmission is also being explored.
But there appears to be some striking similarities both scientifically and
in regards to public perception.

Although it is well known within the CFS community that Wikipedia is full of
conflicting information about two separate things - unproven hypotheses
about neo-Freudian hysteria and unwellness and a severe neuroimmune disease
(ICD-10 G93.3) in regards to CFS, here is a brief summary of how prejudice,
a virus, and government foot dragging resulted in many lives lost and
destroyed in a much shorter time frame than CFS:

The history of *HIV/AIDS in the United States* began in about 1969, when HIV
likely entered the United
States http://en.wikipedia.org/wiki/United_States  through
a single infected immigrant from Haiti http://en.wikipedia.org/wiki/Haiti .
[1] http://en.wikipedia.org/wiki/HIV/AIDS_in_the_United_States#cite_note-0
[2] http://en.wikipedia.org/wiki/HIV/AIDS_in_the_United_States#cite_note-1
[3] http://en.wikipedia.org/wiki/HIV/AIDS_in_the_United_States#cite_note-2  In
the early 1980s, doctors in Los
Angeles http://en.wikipedia.org/wiki/Los_Angeles,_California, New York City http://en.wikipedia.org/wiki/New_York_City , and San
Francisco http://en.wikipedia.org/wiki/San_Francisco  began seeing young
men with Kaposi's Sarcoma http://en.wikipedia.org/wiki/Kaposis_Sarcoma , a
cancer http://en.wikipedia.org/wiki/Cancer  usually associated with elderly
men of Mediterranean ethnicity.

As the knowledge that men who had sex with men were dying of an otherwise
rare cancer began to spread throughout the medical communities, the syndrome
began to be called by the colloquialism "gay cancer." As medical scientists
discovered that the syndrome included other manifestations, such as
pneumocystis pneumonia http://en.wikipedia.org/wiki/Pneumocystis_carinii_pneumonia ,
(PCP), a rare form of fungal pneumonia http://en.wikipedia.org/wiki/Fungal_pneumonia ,
its name was changed to "GRID," or *Gay Related Immune
Deficiency http://en.wikipedia.org/wiki/Gay_related_immune_deficiency
*.[4]http://en.wikipedia.org/wiki/HIV/AIDS_in_the_United_States#cite_note-3
This had an effect of boosting
homophobia http://en.wikipedia.org/wiki/Homophobia  and
adding stigma to homosexuality in the general public, particularly since it
seemed that unprotected anal sex http://en.wikipedia.org/wiki/Anal_sex  was
the prevalent way of spreading the disease.

Within the medical community, it quickly became apparent that the disease
was not specific to men who have sex with men (as blood
transfusionhttp://en.wikipedia.org/wiki/Blood_transfusion
patients, intravenous drug http://en.wikipedia.org/wiki/Intravenous_drug
users,heterosexual http://en.wikipedia.org/wiki/Heterosexuality  and
bisexual http://en.wikipedia.org/wiki/Bisexuality  women, and newborn
babies became added to the list of afflicted), and the Centers for Disease
Control and Preventionhttp://en.wikipedia.org/wiki/Centers_for_Disease_Control_and_Prevention
(CDC)
renamed the syndrome AIDS http://en.wikipedia.org/wiki/AIDS (Acquired
Immune Deficiency Syndrome) in 1982.

Hemophiliacs http://en.wikipedia.org/wiki/Hemophiliacs , who require
injections of blood clotting factor as a course of treatment, during the
late 1970s and 1980s also contracted HIV in large numbers worldwide through
the spread of contaminated blood
products http://en.wikipedia.org/wiki/Contaminated_haemophilia_blood_products
.
Regarding the social effects of the HIV/AIDS pandemic, there has been since
the 1980s a "profound
re-medicalization http://en.wikipedia.org/wiki/Medicalization
of sexuality http://en.wikipedia.org/wiki/Human_sexuality ".[5]http://en.wikipedia.org/wiki/HIV/AIDS_in_the_United_States#cite_note-4
[6] http://en.wikipedia.org/wiki/HIV/AIDS_in_the_United_States#cite_note-5
[edithttp://en.wikipedia.org/w/index.php?title=HIV/AIDS_in_the_United_States&action=edit&section=1
]
Public perception

One of the best-known works on the history of HIV is 1987's book *And the
Band Played On http://en.wikipedia.org/wiki/And_the_Band_Played_On *, by Randy
Shilts http://en.wikipedia.org/wiki/Randy_Shilts . Shilts contends that Ronald
Reagan http://en.wikipedia.org/wiki/Ronald_Reagan 's administration dragged
its feet in dealing with the crisis due to
homophobiahttp://en.wikipedia.org/wiki/Homophobia ,
while the gay community viewed early reports and public health measures with
corresponding distrust, thus allowing the disease to spread and hundreds of
thousands of people to needlessly die. This resulted in the formation of
ACT-UP, the AIDS Coalition to Unleash
Power http://en.wikipedia.org/wiki/AIDS_Coalition_to_Unleash_Power  
by Larry Kramer http://en.wikipedia.org/wiki/Larry_Kramer .

This work popularized the
misconception http://en.wikipedia.org/wiki/HIV_and_AIDS_misconceptions
that
the disease was introduced by a gay flight
attendant http://en.wikipedia.org/wiki/Flight_attendant
named Gaƫtan Dugas http://en.wikipedia.org/wiki/Ga%C3%ABtan_Dugas ,
referred to as "Patient Zero http://en.wikipedia.org/wiki/Patient_Zero ".
However, subsequent research has revealed that there were cases of AIDS much
earlier than initially known. HIV-infected blood samples have been found
from as early as 1959 in Africa *(see HIV
http://en.wikipedia.org/wiki/HIV  main
entry)*, and HIV has been shown to have caused the death of a sexually
active St. Louis boy in
1969.[7]http://en.wikipedia.org/wiki/HIV/AIDS_in_the_United_States#cite_note-6

Shilts also details the fact that despite recommendations from the Centers
for Disease Control, the Red Cross
http://en.wikipedia.org/wiki/Red_Cross  and
other non-profit blood banking organizations refused to ban bisexual and gay
men from donating blood in an effort to keep the blood bank industry from
suffering shortages
, particularly in cities having large homosexual
communities; the same cities where AIDS was first discovered in. As a
result, tens of thousands of hemophiliacs and
transfusionhttp://en.wikipedia.org/wiki/Blood_transfusion  recipients
were infected and died.

It has been theorized that a series of
inoculations http://en.wikipedia.org/wiki/Inoculation
against hepatitis http://en.wikipedia.org/wiki/Hepatitis  that were
performed in the gay community of San
Francisco http://en.wikipedia.org/wiki/San_Francisco  were
tainted with HIV. Although there was a high correlation between recipients
of that vaccination http://en.wikipedia.org/wiki/Vaccination  and initial
cases of AIDS, this theory has never been proven. HIV, hepatitis
Bhttp://en.wikipedia.org/wiki/Hepatitis_B ,
and hepatitis C http://en.wikipedia.org/wiki/Hepatitis_C  are bloodborne
diseases with very similar modes of
transmission[1]http://www.cdc.gov/niosh/topics/bbp/ ,
and those at risk for one are at risk for the others.

Activists and critics of current AIDS policies allege that another
preventable impediment to the attack on the disease was the academic
elitismhttp://en.wikipedia.org/wiki/Academic_elitism  of
"celebrity" scientists. Robert
Gallohttp://en.wikipedia.org/wiki/Robert_Gallo ,
an American scientist who was one of many to attempt to figure out if there
was some kind of new virus http://en.wikipedia.org/wiki/Virus  in the
people who were affected by the disease, became embroiled in a legal battle
with French scientist Luc
Montagnierhttp://en.wikipedia.org/wiki/Luc_Montagnier .
Gallo, too, appeared hung up on the possible connection between the virus
causing AIDS and HTLV http://en.wikipedia.org/wiki/HTLV , a
retrovirushttp://en.wikipedia.org/wiki/Retrovirus  that
he had worked with previously. Critics claim that because some scientists
(and biological research companies) wanted glory and fame (and lucrative
patent rights), research progress was delayed and more people needlessly
died. Eventually, after meeting, the French scientists and Gallo agreed to
"share" the discovery of HIV.
Publicity campaigns were started in attempts to counter the often vitriolic
and homophobic perception of AIDS as a "gay plague." In particular this
included the Ryan White http://en.wikipedia.org/wiki/Ryan_White  case, red
ribbon campaigns, celebrity dinners, the 1993 film version of *And the Band
Played On*, sex education programs in schools, and television
advertisements. Announcements by various celebrities that they had
contracted HIV (including actor Rock
Hudsonhttp://en.wikipedia.org/wiki/Rock_Hudson ,
basketball star Magic Johnson http://en.wikipedia.org/wiki/Magic_Johnson ,
tennis player Arthur Ashe http://en.wikipedia.org/wiki/Arthur_Ashe  and
singer Freddie Mercury http://en.wikipedia.org/wiki/Freddie_Mercury ) were
significant in making the general public aware of the dangers of the disease
to people of all sexual orientations.
 







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