Human Question: Interview with Stefan Etgeton, Consumer rights activist (2)
Duration: 00:19:48; Aspect Ratio: 1.366:1; Hue: 0.639; Saturation: 0.156; Lightness: 0.536; Volume: 0.090; Words per Minute: 102.900
Discusses the changes in quality of life that has happened over the decades for AIDS patients and how this influences prevention work.
So in terms of social development, there are many progresses. And in the nineties, the AIDS phenomenon itself changed a lot due to the new treatment. So in terms of life perspective and life quality, and even the way how people with AIDS die - because they still die, of course. But they die different. For example, in the eighties, it was a very long process of dying. We now face a situation that people are stabilised by the treatment and die very very suddenly, many of them, - unexpected, sometimes. So...and living with HIV and living with AIDS has its own perspective now. People are getting to work again, people are starting education, for example, or they begin psychotherapy, for example. Things like that. So people have a future, and future is open, again, because there are some doctors who say - people who are infected today have an average life perspective. I don't believe it, but there are some optimists who tell this. And on the other hand, of course we have problems with prevention. Due to the new perspectives, the threat is not as much as it was in the 80's. And the threat was of course part of the prevention. We tried to reduce the threat because that is not a good means of prevention. But of course threat was one of the motivations to protect oneself and your partner. And the threat is decreasing, of course, fortunately. And on the other hand, there is...many people, gay people, especially older gay people, are tired of prevention. Because prevention is a forget work. Psychologically, sexually in a way, you have to be conscious of what you're doing in situations where you don't want to be conscious. You want to forget everything. So, this is a surplus work for everybody. And you can't expect people to have this work, to do this work, for centuries and centuries. So...especially for the old people, it is...some of them, when you get 40 or 50, and they see that people with AIDS live for a longer time. You have a sort of risk management that you tell yourself, well, is it so important to prevent an infection for me any longer?
average life perspective
living with aids
living with hiv
motivation to protect oneself
quality of life
And you have the young people, very young, gay people and other ones, heterosexual people, who were not confronted with the implementation of prevention, with the implementation of AIDs. They didn't realise the shock of the change between the time before and after AIDS. They were grown up with HIV and AIDs, they were grown up with prevention, in school. But it has nothing to do with themselves. They don't know anybody infected. Maybe they know, but they don't know that they are infected, maybe, I don't know. And so the confrontation with HIV and AIDS is not so personal for them, and some of them maybe, like think it's a matter of old people, it's not my problem. And that's a problem for prevention, of course. So we have progresses in anti-discrimination, we have progress in treatment, but we have problems with prevention
Discusses why certain groups of people do not consider HIV/AIDS an issue that might matter to them - which becomes an issue with prevention. So while there is progress in anti-discrimination and treatment, prevention still lags behind.
confrontation with hiv/aids
Discusses why HIV infection rates and other sexually transmitted diseases are increasing in some regions. Possible reasons might be changing perspectives on risk management and prevention.
(Q: Do you think the number is increasing again?) I don't know exactly, but the figures are, in some regions, they are increasing, even amongst the gay people. In some regions, they are not in Germany, and what we experience is that the transmission of sexual diseases is increasing. So this is an indicator that sexuality is not that much protected, as it was before. For.., for example, syphilis and other sexual diseases - sexually transmitted diseases. If this means - what this means is that even HIV is more, but I don't know. But medical reasons, due to the new treatment, you should expect that there should be less infections, because the virus is reduced even in people who are infected. But the number did not...so I think you have a certain kind of mixtures of factors, which means that people are not protecting themselves so rigidly as they did in the eighties. But that's - that kind of risk management, and the target of prevention is not just reducing the number of infections. The target of prevention is making people able to have their risk management, which is fitting for their life situation, even if they risk to be infected. That might be awful for somebody who looks upon the health system more on an economic perspective, because the treatment is very expensive. And I think people should be aware, also, of the economic perspective. But nobody will prevent an infection to save money for the health system. You can't expect people to do that
hiv infection rates
sexually transmitted diseases
target of prevention
Discusses immigration laws and HIV status in various countries
(Q: If you're infected with HIV, can you travel easily outside Germany?) Yes, of course. Nobody would ask you. You can travel outside. Whether you can travel inside another country, that is the problem. For example, United States - you cannot travel as HIV+ when you are open; you have to hide it. For example, Cuba - you can go there as tourists, but if you stay there longer than 3 months as positive, you have to leave the country. So there are many countries in the world with restrictions against HIV+. But not in Germany. You can move to Germany, if you're allowed to move, as a foreigner. And nobody would ask you whether you are positive or not.
restrictions against hiv positive
Discusses the changing trend in the kind of tourists and immigrants that visit Germany and how it impacts prevention work. The growing number of immigrants from high epidemic countries changes the scope of prevention work to include a diverse and heterogenous community.
(Q : Many people from the North go the South as tourists, but don't take proper precautions. In your work, has this been integrated in any way?) Not the tourists moving to developing countries, because this is the "average" population. Ok, when you have gay tourists, of course, this is one of our issues, of AIDS Hilfe. But not the average, the heterosexual sex tourist. That was one of the issues of the Federal Centre for Health Education. They have certain programs, for example, in airports, with education material and things like that. But in the 90's, there was growing ...as you can say, a third target group, a third group of risk people, which are immigrants from countries where the epidemic is very very great. So it's now the second biggest group of infections in Germany, which are tested in Germany, is by people from the so-called countries, Pattern 2 countries, from the countries where the epidemic is very big. So there are people from Africa, from Asia, and also from Eastern Europe, moving to Germany, and the epidemic in Eastern Europe is very-very developing right now. And so you have this "group" which is very heterogeneous. It is not one group - there are different cultures, different origins, and different generations of people. So it's very different to the gay group, and the drug users' group in Germany, because they have a sort of identity. The migrants in Germany - they don't have a migrant identity. You have an identity as people from Russia, or people from Yugoslavia, or people from Ghana, or India, or wherever. So this is very very difficult to...because the prevention work has to use existing settings, existing identities, and you have to be part of these groups, of these communities. And normally the people working in AIDS are not part of the migrant communities. So this was a big issue at the end of the nineties and the beginning of this century in AIDS hilfe to have a process of, what we call, intercultural opening, to change the structures of AIDS hilfe, to get people working in AIDS hilfe, from the migrant background, for instance. That's very difficult; because you have to educate them you have to...combine very different cultures. There are many cultures people come from, where for example sexuality and gay sexuality is stigmatized and it's a problem of cultures within the organization. So I think this process is not finished right now. It's still underway, and that's very difficult. Because you have problems in prevention, you don't have more money, you have less money. And you have to change the organization, you have more targets and tasks you have to work on. So this is a very difficult situation for the organization, of course.
education materials in airports
federal centre for health education
high epidemic countries
pattern two countries
structures of aids hilfe
Talks about his how his work responsibilities have shifted from self-help organizations to working with NGO and consumer rights, in terms of financial interests, law, health, patient rights, insurance, and the Bundes scheme.
(Q: What is your current work?) My work now is not a self-help organization, it is an NGO again, but it's the NGO of consumers' organizations. So this organization is not dealing only with health issues, but also with financial services, for example, or building some houses or things like that, to counsel consumers for their interests, financial interests, for ...questions about the law, things like that. But this organization is also working on health issues, they are counseling patients about their rights towards the doctors, for example, or about their rights towards insurance companies. So this is the work on the field, and I am in the umbrella organization, responsible for the policy of the organization in the issue of health. So I am working on patient's rights; I am working on the rights of people towards their insurances; I am working on how the catalogue of services paid by the public insurances is shaped. There is, what we call Bundes......., it is a special organisation, where there are the doctors' organizations and the health insurances, and they're talking about what is paid by the helath insurance. And due to the ___, this year, there are also patients talking with doctors and health insurances, and I am one of the people who are for the patient's interest in this Bundes. So this one very big part of my work right now.
Discusses the feasibility of getting private insurance depending on one's HIV status. Most people depend on Public insurance system in Germany.
(Q : If you are HIV+, do you have private insurance or can you claim from the State?) It depends on where you have been before you get infected. Of course there are few people, we have about 9 or 10% people who are privately insured in Germany. Most of the people are in the public insurance. So when you get infected as a privately insured man or woman, the insurance will pay for your costs because you have a contract, but when you are infected and then want to be a member of private insurance, then they will not take you, they don't have to take you. So most of the people are in the public insurance system, we have many, we have about 300 different companies public insurance companies and you can choose and they have to take care of you as some part of the chronic disease or HIV... but for example, due to the (German org.) we have the opportunity to get some surplus insurance, your public insurance company can offer you a contract worth a private insurance company, for example to get a better service in the hospital for example would be good for prople with HIV. But you won't get that contract, because you have ot do that with a private company and they wont take you because eyou are a "bad risk". So private companies are no alternative for people with HIV/ Aids.
9 to 10 percent privately insured
300 public insurance companies
public insurance system
Discusses drug prices and the pharmaceutical industry's interest in the German market.
Germany is a high price market for the pharmaceutical industry. so the medication is very expensive. The new medication and also the generic medicines are also expensive than other countries and the German market is the reference for the other countries in Europe, for example, the Dutch market or the French market. So when the prices in the German market increase or decrease, most of the European prices would do the same. So the industry is very interested in Germany, to stabilize high prices, to have high prices in their products. When the medication is new, there is a patent, and then the company can make a free price, as much as they want. we have a different law right now that, this is possible for a medication which is an innovation, because we have many patents for new medication and there is no innovation. So they try to reduce the prices for this medication. I don't know exactly how it works on HIV medication because we don't have this right now for HIV medication. So HIV medication, the new one is quiet expensive. But we face now the period 10 yrs/ 15 yrs, when the first medication of patents..., are not working anymore. So I think the prices will decrease in the next years.
high price market
patents for new medication