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German hemophiliacs protest over HIV
by Arthur Allen
Associated Press Writer
AP) — Stirred by the contaminated blood
scandal that helped sink a French government,
hemophiliacs in Germany have begun demanding
compensation and an investigation into tainted
blood supplies.
With over a quarter of the nearly 8,000 Ger
man hemophiliacs infected with HIV and 300
dead, many are seeking money for the sick and
their relatives “before we all die off and it’s too late,”
said a statement from the Hemophiliacs Society.
About 50 people protested at the Health Ministry
to demand up to 360,000 marks ($216,000) for
each person infected through the blood supply.
“You can’t awaken the dead with money,”
said Elizabeth Kolz, whose son is a hemophiliac.
“But there are women and children who were left
alone and they have nothing. It’s a scandal.”
Four French officials were convicted and the
reputation of the Socialist government ruined last
year in a scandal surrounding the distribution of
HIV-infected blood. Unlike in France, blood banks
in Germany are private. An inquiry in Germany
found no basis to charge or reprimand public
officials, and lawsuits against blood banks have not
been successful.
“Officials acted within the constraints of what
was scientifically known,” said Franz-Josef Bindert,
a Health Ministry official. “In hindsight, they could
' have done better, but they aren’t liable.”
But a paper by the-Hemophiliacs Society
claims neglect and a slow reaction by health au
thorities contributed to the massive infection of
hemophiliacs in 1983-1985. Eighty percent of the
blood distributed in West Germany was imported
from the United States, some of it HIV-contami-
nated. While a test for the presence of HIV in blood
only became available in 1985, tests for hepatitis
antibodies, carried by more than 80 percent of
AIDS-infected blood donors, were available by
1981. No general recall of blood products was
ordered, so contaminated blood products contin
ued to be used in some cases into 1986.
Kolz, the mother of a hemophiliac, recalled
how a doctor advised her to treat her 12-year-old
son, Matthias, with a special pasteurized plasma as
early as 1981.
“My son is not infected, thanks to this,” she
said. Some of her friends did not get that advice,
however, and their children are Sick or dead. Word
was out that the blood was unsafe, she said, but
“nobody knew what to do. We were all afraid that
our sons would inject themselves with death, but
we had no alternative.”
Child hemophiliacs need coagulant injec
tions about four times a week to avoid internal
bleeding or crippling joint problems. In East Ger
many, where such blood products weren’t avail
able, only a handful of hemophiliacs contracted
AIDS. That accounts for the lower overall rate of
AIDS among hemophiliacs in Germany compared
to the United States, where about half are infected.
Bindeit noted that pharmaceutical company
insurers gave 60,000 marks ($35,000) to each
HIV-infected hemophiliac in 1987. But Dr. Ute
Braun, director of the Hemophiliacs Society, said
the settlement was reached before there was full
awareness of the government’s responsibility.
“The hemophiliacs didn’t go public because
they didn’t want to be discriminated against,” she
said. “They didn’t want it known they had AIDS.”
The opposition Social Democrats on Wednes
day proposed the creation of a fund for hemo
philiac AIDS sufferers.T
Hie lifetime costs of HIV disease
by Brenda C. Coleman
AP Medical Writer
(AP) — The cost of medical treatment for a
person with the AIDS virus is about $119,000 from
the time of infection until death, a federal re
searcher estimates.
That includes $50,000 for treatment from
infection until the person is diagnosed with AIDS,
which can be several years, said Fred J. Hellinger,
an economist in the Agency for Health Care Policy
and Research. It is part of the U.S. Department of
Health arid Human Services.
The other $69,000 covers the time from
diagnosis until death, a period projeeted to be 25
months for people diagnosed this year, Hellinger
reported in Wednesday’s issue ofthejoumalof the
American Medical Association.
Hellinger said it is the first study showing a
drop in the cost of treating AIDS, and part of the
drop is due to fewer and shorter hospitalizations
for AIDS patients and more outpatient treatment.
By comparison, 1992 treatment costs for lung
cancer were about $20,000, for breast cancer
$52,000, and for kidney failure $175,000.
Hellinger, who has reported on AIDS costs for
Page 34 ,
the government for years, previously estimated
that treatment costs for the disease from diagnosis
until death were $57,000 in 1988, $75,000 in
1990, $85,333 in 1991 and $102,000 in 1992.
Previous estimates did not include the infec-
tion-to-diagnosis interval. The previous figures
were probably high because they were based mostly
on data from large northeastern cities that have
higher frequencies of hospitalizations and longer
hospital stays for AIDS patients, Hellinger said.
Discounting that, “there has certainly been a
drop in frequency and length of hospitalization in
all the cities in the last 18 months,” Hellinger said
Tuesday in a telephone interview.
From early 1991 to mid-1992, the number of
days that AIDS patients spent in hospitals declined
33 percent, from 52 to 35 days, Hellinger said.
Survival time has gone up but appears to be
leveling off, for reasons that are not clear, he said.
Initially, people with AIDS survived about a year
after diagnosis. Then, mean survival spurted up to
22 to 24 months, he said. “Maybe we have to go
another generation (of improvements in treat
ment) to increase it” significantly again, he said.
“Maybe we’ve prevented what we can prevent”
with available drugs and knowledge.
Data for Hellinger’s report came from inter
views during spring and summer of 1992 with
1,164 people with human immunodeficiency vi
rus, or HIV, which causes AIDS. Of the total, 784
had AIDS, Hellinger reported. The subjects were in
10 cities.
Dr. Phillip Pierce, associate professor of medi
cine and director of the HIV clinical program at
Georgetown University Medical Center, said the
self-reporting element of the study and the geo
graphic diversity of respondents lent credence to
its conclusions. Self-reported data, Pierce said in a
telephone interview, is more comprehensive.
Estimates of treatment costs were made for
each stage of the infection and the disease, then
were added together to reach the estimated lifetime
medical costs. Even with the improved data, the
study’s estimates are likely to be high, because they
assume patients have access to medical care and
use it from the time of infection until their deaths,
Hellinger said.
Pierce agreed, “We’re much more efficient
than we were two or three years ago in treating this
disease. I think these costs are rather high.” ▼
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