From: matthew@ooc.uva.nl (Matthew Lewis)
Subject: Conference newspaper - Wednesday 22 July  - part 4
Note: non-commercial reproduction.
Archive-Number: 5760
Organization: Center for Innovation and Cooperative Technology, University of Amsterdam
Date: 22 Jul 92 16:41:24 GMT

(article continued from part 3)

Sebastian Lucas:
The most deadly infection 

Data from the largest autopsy study of HIV-related deaths ever 
conducted in Africa show that TB is the prime cause of death in 
adults with HIV.  Dr Sebastian Lucas, who collaborated with Dr 
Kevin De Cock on this study from Cote d'Ivoire, says that TB was 
the cause of death in over 35% of adults with HIV.
The study, Project RETRO-CI, included autopsies of over 300 
seropositive adults, 46 seronegative adults, 78 seropositive children 
and 78 seronegative children.   
The big surprise was that autopsies showed considerable numbers 
of patients with TB but almost none with pneumocystis pneumonia 
as the cause of death (see Figure).  Lucas says: "TB is clearly the 
most important HIV-associated disease in Africa, and since Africa 
has 65% of all cases of HIV infection, that makes TB the most 
important AIDS-associated infection in the world.  It is the major 
cause of death among HIV-seropositive adults in Abidjan."
This is particularly important since TB is preventable and/or 
treatable.  Lucas found that although many patients entered the 
hospital only after they had reached the terminal stage of the 
disease, a significant number presented with tuberculous 
meningitis, had relatively high CD4 cell counts, and probably would 
have survived for several more years had they not succumbed to TB.  
The high incidence of tuberculous meningitis led the researchers 
to suspect that some of what has been called AIDS dementia 
complex is actually TB, at least in Africa. Furthermore, many cases 
of what had been presumed to be pneumonia are clearly also TB. 
Lucas's findings also confirm Dr Muzuwa Banda's experience in 
Zambia (see related article this page) that over 40% of outpatients 
who have TB also have HIV and that TB in such cases is less likely 
to be in the lungs than in areas outside the lungs.  "TB is only 
transmissible - by coughing - when it is in the lungs," Lucas pointed 
out.  "You can have TB in the lymph nodes, and nobody will ever 
know about it.  There is no doubt that there is less cavitating 
disease in HIV-infected patients, and those who have it are 
apparently less infectious to others through the standard means by 
which TB is transmitted."

Larry Gostin:
TB detention orders 

While many developing countries struggle to obtain drugs to treat 
TB, the US is faced with the problem of how to ensure that patients 
complete their treatment courses, which can last six to nine 
months. Moves to quarantine patients who refuse to comply is 
prompting concern over human rights. Larry Gostin of the 
American Society of Law and Medicine describes the human rights 
problems as "enormous and growing". 
Gostin says: "We have finally developed a worldwide consensus that 
respecting human rights is essential in order to promote the public 
health. That fragile consensus could buckle under with the TB 
epidemic, with calls for isolation, quarantine, compulsory 
treatment and compulsory screening, using HIV as a marker for 
people at high risk of TB."
Gostin says there are two problems: the more acute one is that 
people with HIV are more likely to develop active TB once they are 
infected with the virus; the second is that patients with active 
pulmonary TB can spread it to others "sharing the same air space". 
In the US, the human rights problem stems from laws dating to the 
turn of the century which allowed local public health officials to 
detain "noncompliant" TB patients without a court order. Gostin 
says that involuntary detentions are increasing, especially in inner-
city hospitals, and have been in the hundreds in New York. Gostin 
describes cases in which "patients have been confined to their 
rooms, sometimes tied to their beds". 
"TB is a disease that is preventable, was largely forgotten in the US, 
and has re-emerged because of social policy failure. We need to 
provide humanistic resources to help people comply with 
treatment, not coercive policies.
The claim that many TB patients are noncompliant is a "gross 
oversimplification" of the needs in their lives, Gostin says. 
*********************************************************
A river without bridges
by Cindy Patton

"The gap between North and South is a reality with a lot of 
difficulties. Like a river without bridges," says Jane Galvao, 
coordinator of Apoio Religioso Contra a AIDS (Religious Support 
Against AIDS) in Rio de Janeiro, Brazil. She hopes that this year's 
conference can help increase international cooperation.
Galvao is an anthropologist who has been working on AIDS related 
projects since 1985: she has studied the social impact of the AIDS 
epidemic in Brazil and her master's thesis, to be published later 
this year, surveys how the Brazilian media represents AIDS.
Since 1988, she has worked with the Instituto de Estudos da 
Religi
o (Institute of Religious Studies or ISER), a nongovernmental 
organization which, like other NGOs, works between institutions 
like universities, churches and the state, and smaller political 
parties and social movements. ISER promotes cultural policies 
emphasising how important religion can be in influencing social 
change in the Brazil. In 1987 ISER held a multidisciplinary and 
ecumenical seminar on AIDS. This was the beginning of Apoio 
Religioso Contra a AIDS (Religious Support Against AIDS, also 
known as ARCA). 

Information
Using print and video materials as well as seminars, courses and 
lectures, ARCA's main objective is to provide adequate information 
about AIDS for Brazil's many different religious traditions. Galvao 
now coordinates this project while working with Dr Richard Parker 
on a Ford Foundation project called "AIDS in Brazil: Evaluating the 
Past and Planning the Future."
She says: "I don't know exactly why I work with AIDS. When I 
began, my interest was more intellectual, but with the years I 
became more involved in the practical questions: the discri-
mination that affects HIV-positive people, the production of 
educational material."
This is difficult, because Brazil is such a large and culturally diverse 
country, already facing poverty and its impact on the health of, for 
example, slum dwellers and street children. In particular, it is 
difficult to get the leaders of the diverse religions involved in AIDS 
work. "Difficult," she says, "but not impossible."
Although it increases the level of stress, Galvao's increasingly 
personal investment in AIDS work keeps her involved.

"Daily I lose friends"
"Work with AIDS affects my life because daily I lose friends and 
daily I know more about the disease and how difficult it is to 
promote health and the civils right of the people affected by HIV," 
says Galvao.
In particular, Galvao hopes to carry on the vision of Brazilian AIDS 
activist Herbert Daniel, who died last March.
"Maybe the word he used can help us build the bridges we need," 
says Galvao. "Solidarity. But solidarity in a very strong way. 
Solidarity not only with phrases but with actions and activities."
*********************************************************
The future exists, after all
By Simon Rozendaal

Six years ago, Johan Westenberg found out that he was HIV- 
positive. The 42-year-old jurist, working as a researcher in private 
international law at the University of Amsterdam was not shocked. 
"Maybe this was because of my legal training," says Westenberg. "I 
tried to reason, to be matter-of-fact. Okay, so I am seropositive."
A year later, it hit him."You're not sick but you're told that you have 
to face death. That is so unreal. I got very depressed. The job 
became strenuous. Working as a researcher at a university is often 
lonely. You need to have a perspective and for a while I did not have 
one."

Living with death
Westenberg went into psycho-therapy and learned to live with the 
idea of imminent death. He discovered that he did have a future 
after all and later became a part-time judge at the Amsterdam 
court. Neither his homosexuality nor his seropositivity hampered 
Westenberg's career. "I told the president of the court I was 
seropositive. He said he could not care less. He laid down only one 
condition - that I take my earring off whenever there was a session 
of the court!"
Westenberg has always been open about his homosexuality. He 
believes this has made it easier to tell people that he is 
seropositive. People who have to reveal their infection and their 
sexual preference at once have a harder time, he observes.

Prejudice
According to Westenberg, president of the Dutch HIV Association, 
which is comprised of people with AIDS and HIV, and council 
member of Eurocaso (European Cooperating AIDS Service 
Organizations), little prejudice remains in many European 
countries, where homosexuals still dominate the epidemiologic 
picture.
"About two or three years ago the panic started to disappear," says 
Westenberg. "The press also played a role in that. In Holland, for 
instance, the media were rather neutral and restrained. We do not 
have newspapers like some of the Britain tabloids which tend to be 
homophobic."
But Westenberg believes many practical and legal problems remain 
for people with HIV and AIDS in Europe. For instance, an HIV test 
is often required in order to obtain a mortgage. Like some 
American states, Canada and most other European nations, Holland 
is not a bad place for people living with AIDS, says Westenberg. 
Norway has a very good record, says Westenberg, but he is 
concerned about the legal system in Sweden. "They still have legal 
powers to intern HIV-infected people against their will," says 
Westenberg. "Up to 14 Swedes are still behind bars because of that 
law."

Financial problems
One problem that remains, however, is that many people with AIDS 
experience extreme financial problems if they become unable to 
work. "Being ill is expensive," says Westenberg. "You try to eat a 
healthier diet, which is costly. There is no need anymore to 
postpone buying that beautiful watch you have seen for many years."

Westenberg was diagnosed with AIDS in 1991. Although he only 
occasionally has  symptoms like infections or fever, Westenberg's 
CD4 count is low Q around 30. Because he can  work for only six 
hours a day, he has left his job as a judge. But Westenberg says this 
does not bother him too much.
"My doctor says as long as you still have T4's, it's okay," says 
Westenberg. "AIDS is only a word. It does not frighten me that 
much. I know people who have had AIDS for eight years and who 
are healthier than some seropositive people."
*********************************************************

-- 
Matthew Lewis, University of Amsterdam		Grote Bickersstraat 72
+31-20-52 51 220				1013 KS  Amsterdam
Internet: matthew@ooc.uva.nl			The Netherlands
Newsgroups: sci.med.aids