Front-line health workers - crucial to tackling TB and HIV related stigma and discrimination

by Andy Seale, Advocacy Adviser UNAIDS

The role of health care workers throughout the world is crucial to an effective AIDS response for a number of reasons. Health care workers not only contribute in the obvious way through staffing essential health services that directly save and prolong lives but they are also critical in challenging the stigma and discrimination that still violently threatens an effective response to AIDS.

The impact of stigma and discrimination has long been documented - ignorance and fear around HIV and AIDS can lead to communities stigmatizing those most associated with the epidemic. Stigma and discrimination combine to create an environment where people are less likely to confront HIV. As we know, inaction whether it is from governments or individuals - can be fatal.

Stigma and discrimination present a complex challenge because we know that when there is a greater uptake of HIV and AIDS services’ communities often start to break down the cycle of fear, denial, stigma and discrimination. This helps to create the kind of environment where stigma is less likely to take hold in the first place. It is therefore absolutely crucial that the health care environment is free of stigma and discrimination – placing considerable responsibility on the shoulders of health care workers.

Sadly, and despite the awe-inspiring work of many health care workers around the world, surveys from a wide range of countries have shown a significant number of health care workers admitting to having refused to care for an AIDS patient, or had denied HIV positive patients admission to a hospital. People all over the world have experienced discrimination at the hands of health care workers with many denied medicine because of their HIV status - yet ironically we know that greater access to care and treatment is a key factor to undermining stigma.

Health care workers play a crucial role at every level in ensuring that services are stigma-free and non-discriminating. And when they interact within their communities outside of work they are also in a strong position to enlighten others about the realities of HIV and AIDS and challenge stigma.

Who is better placed to talk candidly about the challenges and realities of people living with HIV and AIDS outside the infected and affected communities themselves? Surely it must be the people who work most directly with people living with HIV and AIDS? The role of health care workers must not be underestimated.

Increasing access to treatment is one of the most powerful incentives for individuals to discover their HIV status and the prospect of a longer more productive life for individuals encourages communities to reassess the way they relate to people living with HIV, creating a sense of hope and reducing the feelings of threat and burden which can trigger stigma in the first place.

Other powerful efforts to curb HIV-and AIDS-related stigma and discrimination are driven by the involvement of people living with, or affected by, HIV or AIDS. Where health care workers nurture close relationships with their clients there is always less stigma -both in the health care setting itself and often in wider communities. HIV and AIDS-related stigma and discrimination often builds on pre-existing social inequalities, prejudices and patterns of exclusion, and further marginalizes people who are already most vulnerable to HIV. These groups, depending on the national context, can include women and girls, men who have sex with men, sex workers and their clients, injection drug users and sexually active young people. It is essential that health care workers are supported to interact effectively with marginalized groups and to reflect on how they can work with them to combat stigma and discrimination.

The stigma around death and AIDS remains high in many contexts and is one area familiar to those also working in TB. Families often prefer to record the death of a loved one as TB-related rather than AIDS-related as they perceive there is less taboo around dying of TB compared to AIDS. When we look at the reasons for this stigma we can see it is usually driven by ill-informed concepts of “innocence” and “guilt” around modes of transmission. We can then understand why TB can be more “acceptable” to some people. Health care workers are uniquely placed to be able to remind people that these are both 'diseases' that require a dignified and professional response.

Much can be done to improve health systems and country-level capacity to deal with both AIDS and TB but as we all rally and advocate for improved health infrastructures and scaling up of interventions - let us not lose sight of the crucial role health care workers also play in fighting stigma and discrimination.
We all need to do more to acknowledge and support this vital role. But this is not easy. The negative consequences are all too obvious when stigma and discrimination occur in health settings but it is hard to measure how health care workers contribute to positively changing attitudes and challenging stigma. Yet it is not impossible. We all owe it to health care workers around the world to think creatively of how we can best capture and document the positive impact they have on influencing attitudes and challenging stigma and discrimination. Their work in this field is truly invaluable.

(March 2005)

Source: Stop TB eForum

Malawian pregnant women opt out of HIV test for fear of stigma

Many pregnant women in Malawi choose not to undergo HIV testing, despite the promise of free anti-retroviral (ARVs) drugs, because of the social stigma surrounding the virus.

In May 2004, Malawi began a five-year, $196 million programme to provide ARVs to HIV-positive people nationwide at no cost. The programme is funded by a grant from the Global Fund To Fight AIDS, Tuberculosis and Malaria.

As part of the programme, many prenatal clinics in Malawi offer HIV testing for pregnant women, and women who refuse are offered the test again before delivery. Many hospitals then give HIV-positive women the ARV nevirapine to prevent vertical transmission of the virus.

However, many women are refusing to be tested because they fear their husbands or community members will shun them. Some women fear that their HIV test results might be revealed when HIV prevalence statistics are published for the country, even though the tests are confidential.

UNAIDS estimates that Malawi has an HIV/AIDS prevalence of 14 per cent and that about 84,000 Malawians died of AIDS-related causes in 2003.

Kaiser Network 18/May/05

SOURCE: IPPF News

HIV, TB, human rights and stigma

Executive Summary of the WHO: Stop TB Guidelines for Social Mobilisation (2001) The full guide is online at: www.stoptb.org/world.tb.day/WTBD_2001/HumanRightsReport.htm
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Tuberculosis (TB) is deeply rooted in populations where human rights and dignity are limited. While anyone can contract TB, the disease thrives on the most vulnerable—the marginalized, discriminated against populations, and people living in poverty.

This guide examines the human rights dimensions of issues affecting people’s vulnerability to contracting TB and their access to TB cure. It looks at specific groups and settings where people are particularly vulnerable to TB and its impacts; and where, if they become sick with TB, are limited in their access to treatment—limitations created by stigma, lack of adequate information, and inadequate resource allocations to those most in need.

The principle of non-discrimination is fundamental to public health and human rights thinking and practice. Gender discrimination, for example, in addition to directly affecting vulnerability to TB and access to TB services, can deny girls and women access to education, information, and various forms of economic, social, and political participation that can increase health risk.

Neglect of the right to information can also have substantial health impacts. Misinformation about what causes TB, how the disease is transmitted and whether it can be cured is linked to the stigmatization of TB and of people with TB. Children in households with TB may also be taken out of school or sent to work. Both situations deprive children of their right to education and put them in situations that may expose them to more prolonged contact with persons with active TB.

Women, children, migrants and refugees, people in prison, and people living with HIV are some of the groups whose vulnerability to TB is discussed.

Prisons are examined as an environment that increases vulnerability to TB. It is argued that "because tuberculosis is easily diagnosed, treatable, and curable but may lead to death if neglected, contracting tuberculosis and not getting treatment because of poor prison conditions may be considered to be a violation of human rights." Both the prison population and the general community have the right to protection from TB generated in prisons and other institutions.

The need to address TB and HIV together in light of the human rights dimensions is urged. Conditions that enhance vulnerability to TB—poverty, homelessness, substance abuse, psychological stress, poor nutritional status, crowded living conditions—also enhance vulnerability to HIV. Both epidemics register their highest rates of infection among populations that are typically disadvantaged or marginalized in their own societies.

The dual epidemic of HIV and TB raises issues of individual choice and confidentiality. Individuals have a right to privacy that protects them against both mandatory testing and disclosure of their health status. Individuals also have a right to education and information about TB, HIV, and the synergy between the two infections so that they can make informed choices about testing and treatment options.

"A health and human rights approach can strengthen health systems by recognizing inherent differences among groups within populations and providing the most vulnerable with the tools to participate and claim specific rights."

Human rights is also presented in the document as a tool for data collection and analysis. Human rights principles and norms are relevant when choosing which data are collected to determine the type and extent of health problems affecting a population. Decisions on how data are collected (e.g. disaggregated by age, sex) also have a direct influence on the policies and programmes that are put into place. Collection of data should be disaggregated and analyzed to draw attention to subpopulations, particularly those vulnerable to TB, in order to ensure that discrimination can be detected and action taken.

Attention must be paid to involving the most vulnerable and marginalized sectors of society in setting priorities, making decisions, and planning, implementing and evaluating programmes that may affect their development. Human rights puts the individual at the centre of any health policy, programme or legislation. Active, free, and meaningful participation of individuals is an integral component of a rights-based approach.

A human rights approach to TB is proposed as an avenue for social mobilization to stop TB. Social mobilization is defined as a broadscale movement to engage people’s participation in achieving a specific goal. It involves all relevant segments of society: decision and policy-makers, opinion leaders, nongovernmental organizations such as professional and religious groups, the media, the private sector, communities, and individuals. Social mobilization is a process of dialogue, negotiation, and consensus for mobilizing action that engages a range of players in interrelated and complementary efforts, taking into account the felt needs of people.

The interdependence of human rights, for example the right to non-discrimination and the right to information as integral to achieving the right to health, and the need for all levels of society to be mobilized around the core principles of human rights, calls for a social mobilization approach.

Health systems and health care delivery are increasingly taking human rights norms and standards into account. This is reflected in a new focus on questions such as: is there equality of access? Are privacy and confidentiality maintained? Do the providers practice non-discrimination? Is there sufficient attention to vulnerable groups? Experience has demonstrated that when health systems take these and other human rights issues into account, patients and public health are both far better served.


Source: Stigma-AIDS eForum, stigma-aids@eforums.healthdev.org

Social stigma deadlier than AIDS itself

By Nyokabi Kamau, The Nation
28 March 2005

NAIROBI (The Nation)-- A RECENT REPORT ON THE SITUATION OF HIV AND AIDS describes it as being in its "death phase".

This is not information that anyone can take for - granted. We are losing lives, but we know many of the deaths can be postponed if only we cured the worse epidemic of stigma.

When former South African President Nelson Mandela shared with the world that his son had died of AIDS complications, he did one thing that surpassed all his other efforts in the fight against the AIDS scourge, because by doing that, he helped to fight the bigger epidemic of stigma.

Stigma is compounded by fear of an incurable disease, fear of death after long suffering, association of HIV/AIDS with sexuality, and a misunderstanding of its causes.

Stigma is indeed deadly because it hinders both prevention of HIV/AIDS and provision of quality care. It is deadly because every human is a social being and when rejected, people become very affected causing death long before the virus could kill.

Two months ago, I read the testimony of a young man who was wrongly diagnosed as HIV positive (Daily Nation, January 26). I could not believe that in the year 2004, HIV tests are still been carried out without any counselling and are still a prerequisite to getting a job.

This young man was simply told he had tested positive and left to decide how he would live with the news.

As would be expected, he ended up in such serious depression, and caught TB which made him believe that he actually had AIDS (assuming he knew the difference between being HIV positive and having AIDS).

At the TB clinic, a HIV test turned out negative, and all other subsequent tests have been negative.

He was one in a million who had his results proved wrong, and indeed lucky that he had not died by the time the second test was done. My heart goes out to the many Kenyans who may be going through the pain that this man had to go through, yet they are not as lucky as he that their first test proved wrong.

I am worried about the attitude that has continued to thrive in this country that makes the stigma a worse epidemic than AIDS itself.

At least, it is now clear that those who accept their status could live for years, but those who cannot stand the stigma must die earlier than they should. This is very unfortunate because stigma is socially constructed, hence it is curable.

An effective way of dealing with stigma is simply assuring people that they are better off knowing their status, that they need not give up if infected, and that there can be quality life after HIV!

If such messages are repeated as often as the condom adverts and those that focus on moralising HIV/AIDS, then we can begin to cure the stigma.

Instead of focusing on positive messages, we continue to be bombarded with ads that simply perpetuate stigma, their messages being that one can only get AIDS if they are irresponsible drunks who have sex with people they do not know, and all that is in store for them if infected, is regret and shame!

Have those who design these adverts ever thought of the impact they have on all those innocent children who got infected through their parents? What of all those trying to live positively and to shun shame and guilt? What of the many children whose parents are infected, and who can only blame them for having being irresponsible? Is that the way we need to be going with our campaign?

One thing that is clear is that none of these messages have led to behaviour change. So why continue to air these ads if their only impact is to fuel stigma? I have taken time to compare the campaign on other equally fatal diseases like cancer, diabetes and heart ailments.

Take for example messages used during the cancer campaign month in October last year. I was so struck by their gentleness and the empathy that I went to have a breast scan for the first time. I was convinced that was the best thing to do if I wanted early managing, just in case.

Why is it so different for AIDS? How many of those reading this have voluntarily gone for a test because they believe this is the best thing to do? Why haven't we had just one "important" person go public on their own HIV status or a close family member's - like Mandela recently and Kenneth Kaunda before him? Is it because the stigma is too much for us to bear?

Let's cure the epidemic of stigma because it has a cure - which rests with us!

Source: Stigma-AIDS eForum, stigma-aids@eforums.healthdev.org

AIDS patients decry stigma at Mulago, Uganda

The Monitor, 28 March 2005

[Mods note: This report suggests that HIV stigma in care settings may continue to be especially resilient. Alleged comments made by an MP in Uganda last month – that some people with HIV and on ARVs should be 'left to die' (reported in The Monitor, Kampala, 8 March 2005) confirm that there are ongoing challenges in the fight against HIV stigma.]

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KAMPALA -- MOTHERS LIVING WITH HIV/AIDS under the Maama Club have accused Mulago Hospital of discriminating infected women during labour. The AIDS Support Organisation (Taso) Clients' Manager, Ms Ruth Anteiveik, said doctors and nurses were mistreating pregnant women infected with AIDS.

She was speaking at the Maama's Club meeting at Mulago on Friday. "These women are roughly handled and given less care. This has caused loss of lives to many of them and their babies," Anteiveik said. The club's chairperson, Ms Fatumah Namata, said infected mothers need more attention to avoid mother to child AIDS transmission.

"We need special doctors who won't cause us stigma. Those at Mulago should be sensitised on this problem," Namata said.

Mulago Hospital head of clients, Dr Agnes Nyamayalwo, blamed the government for not solving problems of understaffing in the hospital. The Club founder, Dr Lydia Mungerera, encouraged the public to go for voluntary counselling and testing to plan their future.

Mothers received aid from the Project Coordinator for the Youth and Aid Association, Dr Paula Nahamya. The donations included basins, jerrycans, foodstuff and clothes.

Kampala Woman MP, Ms Margaret Zziwa, attended the meeting. She appealed to the government to secure an HIV/AIDS fund to support fieldwork and support AIDS victims.

Source: Stigma-AIDS eForum, stigma-aids@eforums.healthdev.org

India: Silence means death

Express India, April 27, 2005.

WHEN it comes to AIDS, silence means death,'' UN General-Secretary Kofi Annan told HIV/AIDS patients at a meeting today. Annan urged them to declare that they are HIV-positive and speak about the disease, to reduce the stigma associated with it.

While he insisted that prevention and treatment is key, he also stressed the need to get rid of the stigma. ''Stigma and discrimination are rampant and hamper resistance to AIDS,'' he said.

The Secretary-General participated in a round-table discussion — Positive Voices Against HIV/AIDS — held at the UN headquarters in Lodhi Estate. The participants included six representatives of the Indian Network of People Living with HIV/AIDS (INP+), representatives of NGOs, Union Health Minister Dr Anbumani Ramadoss, NACO director general S.Y. Qureshi and Laxmi Bai, secretary of Dai Welfare Society.

''India stands a great chance and they don't want to go the Africa way,'' Annan said. His main concern seemed to be the discrimination faced by people living with HIV/AIDS.

His wife, Nane Annan, applauded the HIV-positive people who chose to speak out. ''I want to say you are courageous to come out in spite of discrimination. Thank you for contributing so much to society by speaking,'' she said.

Besides raising issues like lack of healthcare and nutrition, participants demanded legislation to prevent discrimination. ''When we declare our HIV status we should be looked at as role models for change. We can show people how to survive...we can do this only when our rights are in place,'' said INP+ member C.D. Costa.

''We have drafted a legislation and by the middle of the year we will have an Act,'' Ramadoss said.

''We have to reach out to young people. The age between 10 to 18 is crucial. There has to be an intersectoral response to reach the unreachable,'' said Dr Sunil Mehta, executive director of MAMTA Health Institute for Mother and Child.

''In India, 29 per cent of those affected with HIV/AIDS are women. Women are the new face of HIV. I am worried about the abandonment of the widows,'' Annan said.

Source: SAATHI
Online at: http://cities.expressindia.com/fullstory.php?newsid=126621