THE personal testimonies recorded in the World AIDS day brochure of the WHO Regional Office for the Eastern Mediterranean tells the story of how human rights fulfilment and violations can facilitate or impede people’s access to effective HIV prevention measures and treatment.
Samer, a male person living with HIV (PLHIV), tells of his experience with the consequences of a breach to his right to privacy.
“I was feeling very sick, so sick that they took me to the hospital. They found out I was HIV positive there. They told my brother before they told me. My family did not want me around the house any longer.”
Bassem, a medical counsellor for a PLHIV group, gives an example of the possible consequence a PLHIV can face once confidentiality is breached.
“A woman went to (a) hospital for treatment and they found out she was HIV positive. The doctor respected her confidentiality, but one of the nurses lived in her neighbourhood and told on her. It became a horrible situation for the woman.”
On the other end of the spectrum, Benjamin, a man living with HIV, explains the importance of healthcare providers who care for and respect the rights of PLHIVs.
“I went to a Voluntary Counselling and Testing centre (VCT centre) because a friend of mine told me about his test. He said it was safe for us to go. So I went. I was HIV positive but they treated me with respect; they did not tell anyone. I feel safe there. I tell all my friends to go, just like my friend did for me,” Benjamin describes.
In Malaysia, stories about breaches of confidentiality, stigma, and discrimination, and issues with the rights to treatment access and employment still exist.
“Unfortunately, the most problematic area is that a lot of ongoing stigma and discrimination is in the hospitals and clinics,” says Professor Dr Adeeba Kamarulzaman, director of the Centre of Excellence on Research in AIDS (CERiA) and the head of University Malaya Medical Centre Infectious Diseases Department.
Some common examples are delays or even refusal to treat, especially those that require surgical procedures, says Dr Adeeba.
“There are several (cases) where patients have been refused procedures such as cardiac catheterisation on the basis of his HIV status,” she explains.
And although things have been improving, providing access to treatment, particularly in closed settings such as in prisons and detention centres, is still challenging due to the lack of human resource, says Dr Adeeba.
“People are still very, very, afraid to reveal their HIV status for fear that they will be dismissed from their jobs. Even if they are working in jobs that do not put them at risk of transmitting the infection to other people, because of the irrational fear and the ignorance of other employees, it is very rare that a person with HIV would openly declare their status,” she adds.
The right link
The link between the respect for human rights (or the lack of it) and health has, ever since the Universal Declaration of Human Rights in 1948, been known to be inseparable. The rights to live, to dignity, to work, to non-discrimination, and to education, are some of the examples that could enable a person to make choices that would – in his or her own way – make life meaningful and rewarding, physically, mentally, and emotionally.
In the HIV epidemic, this link cannot be ignored. As the UNAIDS web page on the issue explains, “The risk of HIV infection and its impact feeds on violations of human rights, including discrimination against women and marginalised groups such as sex workers, people who inject drugs, and men who have sex with men. HIV also frequently begets human rights violations such as further discrimination and violence.”
“What we have seen, from the very beginning, is that human rights have a tremendous impact on the epidemic, in a positive sense when rights are protected, and in a negative sense when rights are violated,” says Dr Chris Beyrer, director of the Johns Hopkins Center for Public Health and Human Rights, who has been involved in HIV treatment and research since the start of the AIDS epidemic in 1985. “These are issues that we are still dealing with after so many years.”
Dr Beyrer, who was in Malaysia recently for the Lancet Series Symposium for HIV in People Who Use Drugs, describes the lack of human rights considerations in responses to HIV that still exist today as some sort of tug-of-war between human rights principles and political will.
“Mainly, it’s because human rights principles, such as universal access to prevention, treatment, and care, and non-discrimination in that care, have so often clashed with strongly held social and legal constraints at country level.
“So, we see countries agreeing to universal access, but then politicians want to deny that access to people whose behaviours are seen as unworthy, illegal, or stigmatised. This includes drug users in many countries, people who sell sex, men who have sex with men, transgenders, prisoners, migrants, and the poor.
“The real meaning of universal access is that it must be universal. In an epidemic response, we cannot pick and choose – who is deserving and who is not. Yet, too many governments persist in doing just this,” he explains.
According to a joint statement made by 25 HIV/AIDS and human rights organisations, Human Rights and HIV/AIDS: Now More Than Ever (www.humanrightsnow.org), six years since the 2001 UN Declaration of Commitment on HIV/AIDS, only two out of three countries reported having laws in place to protect people living with HIV from discrimination.
73% of countries reported having non-discrimination laws or regulations that specify protection for vulnerable populations. Nevertheless, substantial barriers that reduce access to HIV services remain: 63% of countries reported having policies that interfere with access of vulnerable populations to HIV-related services.
In Malaysia, programmes to reduce HIV transmission such as needle exchange and methadone replacement therapy for drug users, free and anonymous HIV testing in government hospitals and clinics, and the distribution of condoms by NGOs, are in place.
There is even a Code of Practice on Prevention and Management of HIV/AIDS at the Workplace developed by the Ministry of Human Resources in 2001 to guide employers and employees on ways to promote a non-discriminatory work environment and manage HIV cases in the workplace (downloadable at bit.ly/hivatwork).
However, existing stigma, discrimination, and punitive laws concerning drug use, sex work, and sexual relationships between people of the same sex remain as barriers to their effective implementation.
As Malaysian Aids Council president and former Prisons Department Director-General Datuk Mohd Zaman Khan described, “We used to have police harassing and testing people who go to methadone clinics for drugs (you can be arrested if you are tested positive for other drugs). The police would also detain and subject those on the needle and syringe exchange programme (NSEP) to urine testing.
“So, if police are always lurking around the place, they would not go there,” he adds.
However, with increasing engagement between organisations such as the Malaysian Aids Council, local NGOs, and enforcement agencies, the situation is improving.
The emphasis on the role of human rights in HIV does not mean that PLHIV deserve more rights than those who don’t. It just means that PLHIVs deserve to be treated as equals to those who are not living with the disease.
“What we are fighting for is non-discrimination. That means, if I need this treatment, I should not be denied it just because I am HIV positive,” says president of the Malaysian Society of HIV Medicine (MaSHM) Dr Christopher Lee.
Sometimes, PLHIV could be denied certain treatments on medical grounds. Vaccinations and surgeries may be delayed or denied because they may be risky for PLHIVs, especially when their immune systems are weak, says Dr Lee, who is also an infectious disease physician.
“In this case, I’m not delaying the operation intentionally because I discriminate (against PLHIV). I’m delaying it to make the patient better before we perform the operation,” says Dr Lee. Nevertheless, some may think that the delay is purely due to a person’s HIV status, which (in such cases) is not true, he explains.
The same applies to the rights of PLHIV outside the hospital. The rights to privacy, freedom of movement, and employment should be respected for all, regardless of their HIV status.
“We are increasingly encouraged that more and more leaders understand that if you cannot access those most at risk, you cannot control HIV spread, and that you can only reach those at risk if your approach is not punitive and demeaning,” says Dr Beyrer.
“But no politician ever lost votes for being “tough on crime” or for upholding “traditional values”. So there is still political expediency driving many lawmakers,” he adds.
Nevertheless, Dr Beyrer thinks the world may be trending towards more tolerance.
“I think we are most encouraged by the fact that all politicians want the youth vote, and the young people today, all over the world, are more tolerant, more compassionate, and more aware of issues like sexual and gender diversity and rights.”
But first, it is important for PLHIV and people who are living lives that put them at a higher risk of getting the infection to know their rights and be willing to stand up for them.
Also, by adhering to treatment and ensuring the safety of those around them, PLHIVs can also play their part in efforts to stop the HIV epidemic.
As it is, even when patients know their rights, many are reluctant to challenge it because that would mean they have to reveal their status, says Dr Adeeba.
This has got to change.
“No one is ever simply ‘given’ their rights by the elite. People have had to fight, like the treatment action campaign in South Africa, or the global activism that got generic drug prices for AIDS drugs. People with HIV and their families and communities are the key,” says Dr Beyrer.
“Providers of care are the next priority, in my view, and we have been important allies in these struggles. Politicians generally have come late in the day, but they are always welcome, however late they arrive!”