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First
Annual Workshop and Conference
A Program of CIFAL Atlanta
Hosted by Emory Rollins School of Public Health
Atlanta, GA, June 19-23, 2005
• Workshop Home
Session 3: Best Practices Sharing: Peer assist reviews
Topic: Inclusion
5 Principles of Action
1. Tackle stigma and discrimination
• All the international conferences outside of the USA
• Not able to travel with anti-retroviral to the USA with
• Strengthen people living with AIDS- empower them, so that they can come out and tell us
- In Caribbean, movement of people living with AIDS is just starting; we only choose which people to strengthened, people associated with AIDS orgs.
- Inform them of their rights, the same as everyone, rights
- Don’t know how to defend their rights, respect them as a person not labeled as HIV+. People are getting fired because they were HIV+.
- Not my business to know what your sexual orientation is, the problems
- Denver- Denver principles- 1983 conference- self empowerment for people living with AIDS:
· condemn labeling people living with AIDS as victims, not scapegoat people living with AIDS because of their lifestyle, form caucuses, be involved at every level, be included at every AIDS forum, ethical responsibility to inform sexual partners, no discrimination of any form, freedom for medical resources, privacy, --or can do your own principles
· Care, respect, dignity, rights should be the same- just and equitable treatment
- Public health system knows but if they disclose, they could go to jail
- Confidentiality is hard
· names reporting- everywhere does have names recording, except for in
- Jam- issue of rights- shouldn’t give more attention to people that are positive. Want to promote an equal playing field. Don’t want to treat them as extra special. Need to tell people that they have the same rights as everyone.
2. Partner with human rights organizations to educate people living with HIV/AIDS
• workshop once a month for human rights for lawyers and judges and workers in humans rights agencies
• Sensitize HR organizations first
• someone asked for antiretroviral for a pregnant woman, judge said they were not competent, didn’t know anything about HIV/AIDS
• training- human rights agencies are a key partner because can educate others too
• collaboration with human rights agencies
• find organizations that have influence on power
• UN has more influence in other countries than US
• Radio program, tell them their rights, go to prisons and tell them their rights, deputy mayor, human rights commissions, churches, docs, other personalities have expressed their support—many people call or express that they want to have a legal consultation, have had good response in listening
3. Positive messaging in media
• Arts and media campaign in Ecuador- call people like soccer, tv stars, pretty women of Venezuela, and utilize these personalities to inform about these topics and sensitize the community. Say that HIV affects everyone
• Guyana- “words have power” targeted the youth, DJs, try to get young people to understand, guidelines for young people, no rush for sex, good response from young people
• Workshop in Vietnam- $35mil to Vietnam to tackle AIDS, all the big orgs were there. Hiring people with HIV/AIDS to represent organizations. Hire AIDS/HIV+ people at all levels.
• Have to talk more, balance between normalizing it (talking about it), and not making it a scary issue
• Honduras- Female fired because of HIV in machila, now she started her own machila
• Need to develop a message, to communicated to the community at large
• Develop a media message
• Develop a national project to confront AIDS, subsection dedicated to HIV for the media. Because media is seeking to increase ratings, they do whatever they want.
• Terminology- how to write about people living with HIV, be sensitive
- Victim=guilty/defeat, patient=derogatory, bad. More preferable to say persons, people with AIDS can fend for themselves. They are not incapacitated to help people.
• Using media in positive way- not using camera in hospital showing that people are getting sick, but give a positive face to AIDS, encourages coming out of people- people living a normal life (shows that in the US)
4. Encourage the hiring of AIDS/HIV professionals and keeping them employed
• Workplace policies- say that they will not discriminate against people with AIDS
5. Get people who can be an example to disclose, work with professionals or decision makers
• Live positive- head of private sector org, musicians, had a campaign, on posters on TV spots, talk about inclusion, well known business leaders, talking more about it
Discussion:
How do you define inclusion?
Jamaica: Participation in the process, same in Honduras,
USA: needs to include the people living with the disease in the process
Jamaica: HIV/AIDS disproportionately affects poor people because of stigma, link between being poor and needing help makes them disclose that they are HIV+ more than people who are well off who can afford to keep it to themselves. People who you want to include in the process can’t express or advocate on their own behalf
Ecuador: people don’t have their own voice to say it, aren’t empowered, since they are uneducated and don’t have money
Jamaica: doesn’t have the self confidence to articulate what they think, and their concerns.
Ecuador: professionals are the ones who exclude them, the physicians are extremely stigmatized by HIV+ people, and doctors have to be very conscious and careful about these issues. Disclose how the treatment is administered because the people who are getting the healthcare were being excluded from the discussion.
Guyana: It is about the same. HIV pos woman, there was such stigma, she felt rejected, and since she felt rejected in the hospital, she would not come back
Inclusion: 1-2 men’s groups living with HIV, stigma at home, if you wear this ribbon then you are going to be rejected from society
Jamaica: participation in the process by people living with HIV, most important include the people most affected, and infected by AIDS
Guyana: with inclusion you need a full education process
Honduras: should be able to include them in the process because they are being stigmatized because there is a fear to get you involved with this disease
Denver, USA: program established in 90 ways to share funds from national to local level- states and cities. It’s about inclusion, fed government tells state govt. that you need to have these people around based on who committee selects. Money comes from mayor and county judges. Mayor chooses who sits in the committee:
1) conduct an assessment
2) conduct priorities process- determine what categories need the most money
3) community assesses government how well the government is doing
How would you define a community?
The Federal government says you have to have 33% of your population living with AIDS
Ecuador: questions
1) Is this included in the law because this is hard for other countries to implement if it is?
2) Stigma and discrimination are so big, because HIV positive people won’t even show up even if they’re paid, how do we organize them, how do we strengthen them so that we can include them?
Honduras: They have gone into communities and to people living with HIV, by radio, and a magazines, because they receive global funds and donations, they give info on diets, medicines, how to live, and to lose the stigma, etc. On the radio one hour a week, cover 60% of the country so they can provide information to people who do or don’t have HIV so they can express themselves through telephone to ask questions. So through radio people with HIV/AIDS are coming out
Jamaica: have meetings for people who are HIV positive, have people come on television and front-page of newspapers, showing their faces and being acknowledged, come to forums to discuss national policy, come a long way for people to come out in public and articulate. Of all these people only a few of them are employed and most are uneducated. Bad because it builds on the belief that this is a poor people’s disease. If you look at the higher social economic levels are more likely to discriminate don’t have to come out so they are most likely to discriminate
Ecuador: 4 congressmen in Ecuador are HIV positive, but haven’t come out. Because they go to a private medicine, so they don’t have to disclose.
Denver: discussion reminds me of 1980s in the United States; no programs no money, most people affected early on were in the gay community, and the interesting thing that happened was that they were being impoverished because of the disease. Put pressure on the government. One strategy that is effective- when you ID someone in congress, they can become the champion and advocate to other important people. Congressman is willing to listen to their fellow congressman than to another advocacy group
Jamaica: not just advocate on behalf of you, than to speak out because have it yourself
Denver: Public policy level vs. public opinion, people should feel comfortable to go to and advocate
Ecuador: Used to have a concert in a park, now have a huge concert, fancy and elegant, and now politicians are being invited and decision makers, and now it’s their concert. Now they’re being criticized for being elitist. But trying to counter the stigma that this disease is a poor person’s
Honduras: People feel more comfortable talking on radio, 80% of organization is people not living with HIV, feels good that people that are healthy are supporting the 20% that are infected
Guyana: clinic has a group that sits down and shares, share challenges and struggles.
What are you doing now to address the inclusion issues?
People are not identifying and this affects the linking of prevention and care, it’s a difficult problem. What is part of the problem is that the national government doesn’t have a national register. Because people may not want to be identified, they don’t want to disclose who they are. It’s important though, because when you apply for money, at different levels what are the levels, etc. if the government doesn’t have that in place,
Guyana: some people will come to the voluntary testing, lots of stuff to get involved, not getting to the people you want to get to. Depends on culture and religion.
Jamaica: so many people not in those “high risk groups” are infected. This is bizarre. That whole section, especially those who are not exposed. If you live in an urban poor area, will be more exposed than people living in higher up areas. More discrimination for people in higher up places. Testing is only done by less than 30% by the target population. Few people do voluntary testing. Over 60% of the people who are positive do not know it. All these social issues. Among the community, because it is disproportionately poor and uneducated harder to get them in inclusion.
Denver: less resources- if you want them to go test, you should give them an incentive? Food?
Jamaica: cell phones? We’re looking at it, offering phone cards. Give them an incentive. Some people come to the meetings for the food, but don’t contribute to the discussion.
It’s not about the numbers. I want people to participate, that’s what we need.
Having people in a room doesn’t mean inclusion
Jamaica: America has all these laws; you can’t be discriminated in the US
Honduras: we should promote and identify them, to get the stigma out.
Ecuador: discussed lawsuits to state and hospitals that aren’t following the law.
Example: I am a person who is HIV, I’m fired, no medication, so I have to do a lawsuit to the state, as a human rights organization they sue the company. The lawyer has to declare me insolvent that I have no resources and in Latin America I am very proud so to be declared insolvent, destitute, and there are people who say that they don’t want it. So they take out of their money pool to pay for test.
Ecuador: government helped start national AIDS program and acknowledged that there is an AIDS problem. They kept saying that it was because of dead people and sex workers. Rate of infection is about 0.09%. We have the same rates as Honduras last year. There is an Africanization of the problem.
Guyana: 3.7% rate of infection. Very high. Workplace policies, every workplace has to have a policy
Ecuador: they need to acknowledge that it is a problem for them.
Guyana: rich- their tests are not reported
Ecuador: question for Honduras. When a person is declared HIV positive, so state can accept. They have to do two test (Liza test $4), western blot ($40-50). Secondary school professor earns $120 a month, how can he get tested, or worse a person unemployed, can’t work. So, most people don’t get tested.
Honduras: minimum salary is $100 a month. People who get tested and the majority are poor go to public hospital to be declared HIV pos. How did your lawsuits work?
Ecuador: the lawsuit was effective but OAS doesn’t want it to become a frequent process, so they installed a procedure that indicates for international lawsuits can only be done if internal resources are exhausted. How do we include people who are HIV pos?
How do we include people who have resources? Get them apart of the movement?
Ecuador: people, who have high number of cases, are in places that are developed. LGBT organizations decided to charge ($4.60 for Liza), 60 cents are used to pay for people who come up pos. Your second test is guaranteed. So Red Cross should copy it.
Most people come back for tests? Mostly no. they come back when they’re AIDS pos. progressed
Just started to do counseling at some testing sites.
Guyana: $1 to go to clinic for counseling, can discuss matters with mother and father. They have rapid testing
Jamaica: just started rapid testing, so they don’t have to come back to get results
One of the important things is counseling, follow up information, if I don’t see you again, support group, telephone counseling should give this info to them at each testing site, so they can take it away. They can have it after testing.
Ecuador: support from private companies is interesting, cell phones.
Jamaica: Do a lot of work with the private sector, wide range of people’s support from private sector
Jamaica: infiltrating, incorporating more AIDS in schools and hospitals. Exposing these issues more to the general public is going to take much of the stigma away.
Honduras: Improve inclusion, improve treatment.
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