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Text File | 1994-02-01 | 16KB | 281 lines

                        OF NOTE...
                        News to Use

Special AIDS Edition (41-50)                          December 1, 1993
Earl Appleby, Jr., Editor                             CURE, Ltd.

                             AIDS Addenda

Mary Fisher, an HIV-infected mother and member of the National
Commission on AIDS, fought back tears as she spoke of the AIDS death
of her ex-husband, Brian Campbell. "I've come from Brian's funeral. I
spent last Saturday holding our sons at his graveside...trying to make
sense of a 5 year-old's grief and a 3-year-old's questions...When next
my children stand at a parent's grave, they may be old enough to ask
whether the nation cares. God help the person who needs to answer
them." (A Mother's Heartfelt Cry, USA Today, 6/29/93)

Kristine Gebbie, Clinton's AIDS policy coordinator, ran "a racially
troubled poorly managed agency." So say people who worked for her as
Washington state health secretary. "My feeling is that she will be
dealing with people who have more prejudice against them than just
about anyone. I just hope they get a fair shake from her." --Debbie
Finley-Justus, former minority affairs director under Gebbie, whose
office subordinates dubbed the "Old South." (Ex-Workers Criticize AIDS
Czar, Bob Partlow & Joel Coffidis, USA Today, 6/30/93)

Displaying Kaposi's sarcoma bruises on his legs, Dr. Peter Jepson-
Young notes, "AIDS is not a focus in my life. It tends to be a bit of
a nuisance." The Canadian physician gets a See Eye dog on HBO's The
Broadcast Tapes of Dr. Peter. ('Dr. Peter' Shows Nobility in the Face
of AIDS, Matt Roush, review, USA Today, 7/1/93)

"Many have expressed concern about the potential impact of Judge
Sterling Johnson Jr.'s ruling ordering the release of the Haitians
held at Guantanamo Bay. This concern has been portrayed as a medical
and financial threat to Floridians, mainly because of perceptions that
medical costs will be high and public health will be threatened
because the AIDS virus might further spread. Many of my constituents
have expressed fear, but most are outraged and incensed at the double
standard to which Haitian refugees have been subjected." --Rep. Carrie
Meek (D-FL). (For Haitian Refugees, Equal Justice Under the Law, Meek,
op ed, Miami Herald, 7/5/93)

"No effective treatment or cure has been identified. Why shouldn't
these AIDS patients doomed according to current medical knowledge be
allowed to try any drug therapy they desire? Not only should the FDA
be allowing this self-experimentation, it should be actively
encouraging it and closely monitoring the result as an adjunct to the
unsuccessful efforts of so-called professional AIDS researchers." --
Anton Noimous, Silver Spring, MD. (Untested AIDS Treatment, Noimous,
let-ed, Washington Post Health, 7/13/93)

"Just five years ago fewer than 200 people in Thailand were known to
be infected with HIV. By late 1992 the number had risen to an
estimated 450,000." --Michael Merson, MD, head of the World Health
Organization's global AIDS program, who projected 30 to 40 million
persons world wide would be infected by the end of the decade. (AIDS
Epidemic Only Getting Worse, Washington Times, 8/10/93)

"It is morning rush hour and you see a car accident. You run to the
scene and discover a well-dressed 30-year-old man, apparently on his
way to work. He has suffered a heart attack; a bit of blood is
dripping from his forehead. Would you administer mouth-to-mouth
resuscitation? If you're a doctor, nurse, or resident at a large Los
Angeles teaching hospital, the answer is likely to be no...The reason:
fear of contracting a communicable disease, chiefly AIDS." (Contagion
a Barrier to Mouth-to-Mouth, Sandra Boodman, WP Health, 8/10/93)

"The neat houses and well-tended lawns, with occasional baseball
fields where children play and adults lounge, give this 40-acre estate
[in Santiago de las Vegas] the look of the prosperous neighborhoods
before Cuba's current economic crisis set in. There are no blackouts
like those that plague the rest of the island, and air conditioners
hum in each house. Chicken, pork, and beef are plentiful and each home
has a color TV. Medical care is free and available around the clock,
as are expensive medicines not found elsewhere. El Maranon, as the
estate was known before the revolution, is not the home of senior
government or military officials but of 283 HIV-positive people, the
oldest of the 13 sanitariums that dot the country as part of Cuba's
unusual approach to keeping the AIDS virus from spreading. The
strategy consists of providing the infected with medical treatment and
special diet, while limiting their ability to transmit the disease by
limiting their contact with society at large." (Patients Laud Cuban
AIDS Care, Douglas Farah, Washington Post, 8/11/93)

"Diana O., a mother of three who lives in Freeport, said a television
reporter once came to interview her, but knocked on a neighbor's
apartment door by mistake. A few months later the neighbor moved...In
her own family, Diana spoke of her illness, but found relatives would
no longer wash and cut her hair. 'I have a daughter who tells people I
have cancer,' she said, and fell silent. 'If that helps her out. it's
OK. If she's too ashamed to tell people her mother is dying of
AIDS.'...Patrick Daniels, a 57-year-old writer who is legally blind,
believes that...The East Hampton Star, stopped publishing his
freelance articles because a picture of him appeared on the front page
of the New York Times...with an article about older men with
HIV...'They have a facade of being awfully liberal, awfully
understanding, awfully humane, but it's about a quarter-inch deep,' he
said...These are the quiet ravages of AIDS on Long Island [NY], which
has the highest suburban rate...in the nation." (Where AIDS Advances,
Understanding Lags, Diana Schemo, New York Times, 8/12/93)

"It has relieved a great deal of stress in my life. One of the most
easily removed immune suppressions is stress. One way to reduce stress
is on individuals is financial security." --John Plater, 26, on the
$23,400 he receives from the Canadian government annually to help him
cope with the HIV he contracted via tainted blood. But his April check
was his last. (Canada's Payments to AIDS Victims Ends, Anne Swardson,
Washington Post, 8/13/93)

"With all the controversies over the role and effectiveness of United
Nations peacekeepers, one issue that has received scant attention, and
that UN officials are loathe to discuss, is the presence of AIDS among
the peacekeeping forces. The militaries of countries in sub-Saharan
Africa are known to have HIV infection rates as high as 80%...A UN
official explains that 'we do not discriminate between black, white,
or AIDS-infected people.'" (UN Peacekeepers and AIDS, Time, 8/16/93)

40% of the beds in the Kenyatta National Hospital, Nairobi's largest,
are occupied by patients with AIDS, but, unlike the exotic infections
often seen in Europe and North America, most suffer and die from
common illnesses treatable with antibiotics, such as bacterial
pneumonia, dysentery, and tuberculosis. (AIDS in Africa--It's a
Different Story, Susan Obie, Washington Post Health, 8/17/93)

A woman found a note in George Sirls' apartment that discussed his
feelings about being HIV-positive. Earlier that day she had been
intimate with Sirls, 46, a volunteer at Houston's People with AIDS
Center. Authorities are charging Sirls under 1989 Texas law making it
a felony to expose someone intentionally to AIDS. (Woman Claims
Partner Hid HIV Status, Washington Times, 8/18/93)

"A government effort to conduct a multiyear test of several AIDS
vaccines was torpedoed by MicroGeneSys Inc.'s refusal to donate its
vaccine for testing, federal officials said...Instead, the Pentagon is
returning to a plan pushed through Congress last year, to spend $20
million testing only the company's vaccine VaxSyn....'I'm
flabbergasted,' said G. Kirk Raab, president and chief executive
officer of Genetech, Inc., a biotech company based in South San
Francisco, California. 'It's pathetic that the government would spend
taxpayers' money' for AIDS research 'in such an unscientific and
political way.'" (US to Test MicroGeneSys AIDS Vaccine After Firm
Torpedoes Broader Study, Marilyn Chase and Thomas Ricks, WSJ, 8/23/93)

"This has nothing to do with segregation. It's a quality-of-life issue
for the patients and an efficiency issue for us. I think it makes very
good sense." --Harry Singletary, Florida Corrections Secretary, on
plans to house 150 inmates in the final stages of AIDS in an Orlando
'AIDS-care' prison, a plan denounced by some civil libertarians as "a
throwback to the days of leper colonies, an attempt to warehouse" AIDS
patients. (Florida Plans 'AIDS-Care' Facility for Ill Inmates, David
Kidwell, Washington Post, 8/24/93)

"I've done a lot of stories about AIDS, and people would ask me,
'Doesn't it upset you doing these stories?' And I'd say, 'No. The
disease--the DISEASE has me on the verge of tears often.' But being
able to do a story gives me a feeling that I'm doing something against
the disease, doing something to combat it. If I can give other people
opportunities where they can help combat this epidemic, I think that
relives the pressure on all of us, to some extent." --Joe Lovett,
independent producer of the ABC special "In a New Light '93." (Program
Sheds 'Light' on AIDS, Scott Williams, Washington Times, 9/3/93)

"The National Commission on AIDS, created four years ago to advise
Congress and the president on the development of 'a consistent
national policy' to address the HIV epidemic is scheduled to expire
today...The commission's final report is neither boastful nor
optimistic but surprisingly frank about the members' disappointment
that its recommendations have not been quickly accepted and put into
practice...It is understandable that the task of grappling with this
horror--trying with limited national resources to mobilize and
energize the fight against AIDS--is dispiriting. But the commission
has not been ineffective. By prodding, goading, criticizing, and
demanding action, it has had an effect. Its final plea for compassion
for victims, commitment of resources, and clear national leadership
should be taken seriously." (The AIDS Commission's Final Plea,
editorial, Washington Post, 9/3/93)

Of 1,863 US inmate deaths in 1991, 528 were due to AIDS. All but 15 of
the AIDS fatalities were males. New York ranked number one with 210
AIDS deaths, followed by New Jersey (66), and Florida (59). (NY Tops
in Inmate AIDS Deaths, Washington Times, 9/13/93)

All but one of Canada's ten provinces and two territories agree to pay
persons who contracted HIV from contaminated blood a $20,000 lump sum
and $30,000 a year for life in return for agreeing not to sue. The
holdout, Nova Scotia. had enacted a more liberal compensation program
earlier this year. (AIDS Compensation, Washington Post, 9/17/93)

"I was a visiting professor at Mount Sinai [School of Medicine in New
York] three years ago. They presented two cases to me of AIDS patients
who died with unexpected lactic acidosis [a buildup of metabolic
byproducts in cells]. I couldn't figure out what had happened to
them." (Cases Linked to AZT Show Difficulty of Tracking Rare Side
Effects, David Brown, Washington Post, 9/20/93)

US District Judge Aldon Anderson rules a 1987 law invalidating the
marriage of people with AIDS violates the Americans With Disabilities
Act and the Rehabilitation Act of 1973. The request to overturn the
law was made by two families and Utah Attorney General Jan Graham.
(Judge Rules Marriage Law Unfair to AIDS Patients, MJ, 9/20/93)

Representing more than 10,000 members affected by AIDS, the National
Hemophilia Foundation sets a September 30 deadline for Baxter
International and four other companies to delineate a plan for a
compensation fund for hemophiliac who contracted AIDS through clotting
agents. Sources inside the negotiations say the NHF is demanding $5
billion, of which $3.5 billion would come from the federal government.
(The High Price of Blood, David Greising, Business Week, 9/27/93)

"We need to set an example...I want all of you to take this as serious
as I do." --Pres. Clinton, announcing all federal workers will receive
training regarding human immunodeficiency virus (HIV), and managers
will be advised how to adjust workplace rules to accommodate people
infected with HIV. (All Workers to Get Instructions in 'AIDS 101,'
David Brown, Washington Post, 10/1/93)

"You have these horrible conflicts dividing people, while more people
are getting infected, and more people are getting sick." -Frank Oldham
Jr., director, New York City Office of Gay and Lesbian Health,
rejecting an informal offer to head Washington, DC's Agency for
HIV/AIDS. (A Leading Candidate to Head DC AIDS Agency Says NO, Amy
Goldstein, Washington Post, 10/14/93)

"Facing a growing AIDS scandal, the German government has launched a
criminal investigation into a federal agency that admitted it kept
quiet for years about suspicious blood supplies used for transfusions
in 1985 and earlier were contaminated with HIV-blood supplies than
infected more than 2,300 people." (HIV-Infected Blood Scandal Rocks
German Health Program, Steve Vogel, Washington Post, 10/26/93)

"Health officials called today for all patients who received
transfusions or other blood products since the early 1980s to undergo
AIDS testing as a widening scandal over contaminated blood threatened
to trigger panic across Germany." (AIDS Tests Are Urged in German
Blood Crisis, Rick Atkinson, Washington Post, 11/4/93)

To mark World AIDS Day, the US Post Office will issue a commemorative
stamp honoring AIDS awareness, The stamp to be issued December 1
features the red ribbon that symbolizes the AIDS-awareness movement.
(Organizations Prepare for AIDS Day, Scott McCaffrey, MJ, 11/8/93)

"Workers at this storefront [Berlin] AIDS center are cynical about the
tainted blood scandal that has tripled calls to their hotline. They
think the government and media have encouraged unwarranted panic.
Since federal Health Minister Horst Seehofer announced last mont the
discovery of blood products infected with the virus that leads to
acquired immune deficiency syndrome, hardly a day has gone by without
a media blast. The cover of the respected magazine Der Spiegel says it
all: 'AIDS Angst Dirty Business With Blood.'" (German AIDS Workers
Upset by Blood Hysteria, Martinsburg Journal, 11/9/93)

                      Health Care Plans and Pans

"Advocates for AIDS coverage have qualms--worries that budget concerns
would limit care for people whose lives can't be saved, fears that
experimental treatments common to AIDS patients won't be covered. But
to (David) Lewis (diagnosed with AIDS five years ago), the bottom line
is that the Clinton plan would protect others from the nightmare he
went through. When his insurance company halved his benefits and
quadrupled his premiums to $500 a month. Lewis faced premiums and
unreimbursed medical costs exceeding $12,000 a year. That forced him
to quit his job as library director in Plymouth, Massachusetts, and do
what 47% of all HIV patients do--turn to public assistance. (AIDS Camp
Plea: Pass Reform Plan, Richard Price, USA Today, c. 10/18/93)

                        A Word From Our Sponsor

OF NOTE is CURE's biweekly digest of disability/medical news. This Special
Edition focuses on one of many topics it covers. The editor, Earl Appleby,
is the moderator of ABLEnews, a Fidonet backbone conference, featuring
news, notices, and resources of interest to persons with disabilities and
those sharing their concerns.

Special Editions include Abled, AIDS, Cancer, Family, Health Care,
Legal, Medical, Mental Health, Seniors, and Veterans.

...For further information, contact CURE, 812 Stephen Street, Berkeley
Springs, West Virginia 254511 (304-258-LIFE/5433).