Human Question: Interview with Stefan Etgeton, Consumer rights activist (3)
Duration: 00:20:00; Aspect Ratio: 1.366:1; Hue: 0.740; Saturation: 0.178; Lightness: 0.453; Volume: 0.083; Cuts per Minute: 0.750; Words per Minute: 74.468
Speaks on phone about being filmed to his mother...
Discusses the pension and social service scheme in Germany and how well it works for various groups of people - people who have paid into the system through work, and those who have not (young people, for example).
So, in the 80's HIV infection was enough as a reason to get this pension. And now, you will get even you got AIDS. So you have to be very ill before you get this pension. But this is sort of normalization. Because every other, any other people with chronic disease will get this pension. So due to the life perspective, mutation? of time, there is a sort of normalization, in the social system. The times of exceptionalism is over in the social security system. And for some people, it is, it is worse, because they had some privilege , because of their HIV infection, and they lose and they are going to lose these privileges. So but that's it. And of course there are peoples for people who got infected very young, who didn't have any work, who didn't pay anything to the insurance system. And they have, they had some problems...but through (german word) Social service, its not much money, but you will die, and you will get medication. Except those for which health insurance does not pay. And there are some medications right now, for which the health insurance do not pay any longer. Not those crucial medication for the treatment, but there are also medication to work with the side effects for example. So you have to do your contribution to medication as everybody has to do. And also have to pay for this medication and that could be very expensive for some individuals. So there are some problems, for certain individuals, even for people who have different diseases, and sometime AIDS is combined, for the treatment is combined with different health problems. So we have sometime 3, 4 different medications and when you have to pay 10 euro to each and have to 30 euro to surplus medication, you have to pay 80 euros per month. And when you get this social security it is just about 300 euros per month, so this could be a problem. ..for individuals.
Bundes +ve....yes, it is a big tradition for AIDS Hilfe, it is the assembly of the people with HIV and Aids, so there are about 5 to 600 people meeting in Germany, talking about their issues and their interests, articulating their issues and interests on a political level. usually they talk about their problems and vote on a certain resolutions. And most of all the mass media will be there, so this one of the events where people with HIV and Aids can talk about their interest in public. Ofcourse the public interest was more in the 80's than it was in the 90's and as it is now. because HIV has become a normal problem. But it is still very important as a community building event.
Discusses the German Positive People Network called the Bundes Positive.
assembly of plha
community building event
german positive people network
Introduces the topic of Health System reform and the cost of medicine.
Well, if I knew the function, I am talking about the consequences of health system reform. and I will talk about things as I told, I will talk about the cost of medicine. Because some people, with HIV/ Aids have severe problems with this reform, and there will be the new " " she is responsible for patient issues in the govt. and she will take part in the discussion and we will talk about how we will judge about the reform, that's my function in.... Of course, I will meet my friends, I know lot of friends...because its my past, and I am still interested in aids issues..
cost of medicine
health system reform
Discusses the openness with which his family accepted his sexual orientation and work.
It was more than okay. I was grown up in a social protestant climate. I father is a deacon, so working with handicapped people, and so in my family there is a positive attitude to work on health, social issues. So my mother and my fatehr were very lucky for me that I was working on this issues and because they know that I am gay, so it was in a way, its natural for them as a consequence that I was working on Aids issues. So it was no problem, it was the opposite.
social protestant climate
Discusses the work of his friend and colleague, Hans Peter, who died last year.
So, there was no social problems, no social discrimination. one of my best friend, he died last year, Hans Peter. he founded the Aids Hilfe in Frankfurt, one of the centers in Frankfurt, and he was also very important for Duetche Aids Hilfe, because he was the member of the board and at the end of the 80's and the beginning of the 90's. and he was the one who established structural interventions. And he was a good friend of mine till 1989 and so I was involved in the Aids Hilfe discussions, the conceptual discussions, 6 years before I started working for DAH. So I think I was prepared ina way working there because of this friendship and that was important for me, because he was not working there when I started, but he was my company, I was discussing with him all the issues of DAH, in way he was my counselor too, and my. My sort of colleague and friend.
duetche aids hilfe
Discusses AIDS in the context of a priviledged disease with lots of Public interest, political interests, and funding.
Yes, it was at the beginning (privileged disease) , because it was a infectious disease. It was high political, therefore it was in high political level, because it was in the public interest to decrease the no. of infection. It was a threat to society, and so the state very-very keen on doing something, spending money, so and there was a big public interest about this. So, spent more money compared with other diseases, so the structures were growing. So we now have about 120 aids hilfe in Germany and even people with other diseases were getting envious, about Aids and people living with HIV and aids and aids hilfe. They said, oh, you get so much money and you are so privileged. And I think that was one of the reasons, I tried to give back something to people living in the handicapped community, people with chronic diseases. I try to contribute from what we learnt about health and health systems, integration of different system of health care into political discussion. We now talk in Germany, we talk about the integration...because we have a very separate system in Germany, the hospital, the ambulance treatment and that produces many problems for people, they have to switch between sectors.. there are no bridges between and the aids care system, care services, aids doctors, care sisters, help org., pharmacies, hospitals, it worked, they worked together, so there were bridges between the gaps, and I think the German health system could learn something from the Aids epidemic, in terms of prevention, and also care. We try to transfer our experiences to health policy and other self help org, other people with chronic diseases; I hope this would be the contribution of the privileged to other ones.
120 aids hilfe
aids care system
german health system
Discusses the scope of work in the CONSUMER ORGANIZATIONS and how it is largely Local centric.
It's very local centric. The consumer organizations are very local centric, and the process I described for Aids Hilfe, inter cultural has not even began in the consumer organizations, there is material for consumers in Turkish language, and that says all about it. So that's it. ...on the national level...but there is of course there is a movement of the consumers at the European and international level. But they don't deal with development issues so much, we are engaged in ( German word ) that means that there are certain standard for nutrition for example, you have a common global market, when you have a common global market you have to harness a standard of quality, so that you can change your goods and services, so we are engaged in this issue, because it has something to do with health, because we are fighting against liberalization the water, distribution of the water market and this very crucial for health, care services, esp dev. countries ..Africa...but this is not my working place..
common global market
distribution of the water market
liberalization of water
standard of quality
Well I was grown up in a Christian culture, my view upon the world is very ,because the world will end, but I am very hopeful that there will a world again,
personal world view
Discusses Christianity and Personal World view Christian culture
...I was very very sad, ................the underline.....melody is still skeptical...here I am...(laughs) I don't believe in reincarnation..
You have to have some very famous, some body like Rock Hudson in the united states for example that was very important, but even then the struggle for Hudson or Elizabeth Taylor, they did not persuade their former colleague Ronald Regan that this was an issue , you have to have political power as we have with Rita ------- we have to have somebody with political establishment, who risks something for this issue, and she risked a lot....she risked a lot, and if you don't have it, its very difficult, you have to work a lot, you have to...a have a very very long..breath...
Discusses how celebrities and politicians can often be very powerful in providing the political impetus for an issue.
Christian speaks, Stefan listening and nodding...