20 March 2018

To celebrate 70 years of universal human rights, Rosalie Hayes from the National Aids Trust (NAT) shares how they use human rights to campaign for change for people living with HIV.

As we celebrate this important anniversary, we are reminded of the importance of human rights to everyone - and particularly for people living with HIV and the communities most affected. The National Aids Trust (NAT) champions the rights of people living with HIV and campaigns for change – often using the Human Rights Act to do so. This March for Human Rights we’re flagging some of the ways that NAT has challenged injustice using the Human Rights Act, with a focus on the right to respect for private and family life (Article 8). This right is protected by the law in the UK today, but was originally set out 70 years ago in the Universal Declaration of Human Rights.

Migrant data sharing

NAT has long had an interest in migrant access to healthcare, largely because a high percentage of people living with HIV in the UK were born abroad. Since 2014, NAT has been leading the campaign against an agreement which enables NHS Digital to share confidential patient data with the Home Office. The right to privacy (Article 8), and its related principle of patient confidentiality, is central to our advocacy to abolish the practice of information sharing between the NHS and immigration authorities.

In January, our campaign culminated in an inquiry by the House of Commons Health Select Committee. The Health Committee were clear and forthright in their view that the practice of immigration tracing via patient records is unacceptable, calling on NHS Digital to suspend the agreement immediately.

None of our data is safe if NHS Digital can decide secretly and unilaterally to pick on certain people and share their data, irrespective of how the rest of the NHS operates. That’s always how it goes – human rights are indivisible. In attacking migrants, they attack us all.

Guide for Care Providers

As people living with HIV live to an older age, a greater number will require residential care or support in their own homes. Historically many people living with HIV did not live into old age so this is not an area where many older people’s services have experience. For this reason many people living with HIV have expressed anxiety about whether they may face discrimination from providers who misunderstand the condition. NAT has also had a growing number of questions from care providers and staff who are unsure how to supportpeople living with HIV.

In response to these concerns, we produced a Guide for Care Providers to ensure care services for older people are ‘HIV ready’. This guide includes key points for managers and care workers on how to protect and promote the rights of people living with HIV in their care. The Human Rights Act offers a range of additional protections to people living with HIV in the care context, including:

  • the right to life, for example ensuring that HIV treatment is taken as prescribed (Article 2)
  • the right not to be subject to inhuman and degrading treatment, for example, by not being provided with  proper care because of misplaced fears around transmission or HIV related stigma (Article 3)

Assaults on Emergency Workers Bill

A new Private Member’s Bill, focused on tougher sentencing for those who assault emergency workers, is attracting widespread attention and support – but one part of the Bill was instantly alarming to us at NAT, and other public health experts. This part will make it an offence, punishable by fine, for suspects to refuse to be tested for infectious diseases, such as HIV and Hepatitis C, following spitting and biting incidents.

Voluntary testing is a cornerstone of an ethical, evidence based and effective response to infectious disease. The enforcement of an offence of refusal to provide a sample for testing amounts to coercion, undermining this long-standing approach and undoubtedly violating the right to private life, as protected by Article 8 of the Human Rights Act.

We have heard the proposal justified on the grounds of the harm caused to emergency service workers who have been bitten or spat at. Victims report that they face agonising waits for their own test results, or that they have had to take post-exposure medication to prevent infection. But testing suspects won’t do anything to protect against this, as these procedures are entirely unnecessary in the first place.

Despite common misconceptions, neither HIV nor Hepatitis can be transmitted by spitting or biting. National medical guidelines do not recommend prescribing prevention medication or testing for diseases following spitting or biting incidents. So, what should happen if a suspect did test positive? The answer is nothing, as there would be no risk from the incident. A positive diagnosis from the suspect would not benefit the victim of the assault and would likely only increase unnecessary anxiety.

We are working with allies in the medical profession, patient advocacy and rights groups, to make sure that this Bill fulfils its potential to protect those who serve us, without causing undue harm – something that rests on the removal of this concerning aspect of the Bill.

Securing change

Across the world universal human rights are vital for everyone, including people living with HIV; the same is true here in the UK. We see discrimination, or the risk of unequal treatment, in many aspects of life, and failing to respect rights hampers an effective response to HIV. Steps taken to ensure people have full access to their human rights are also steps taken to lessen the impact of HIV. And so, we need to be making the case for improving access to human rights for all, celebrating the importance of universal protections here at home.

Take action, join in
If you believe in universal human rights, take a moment to sign our UDHR birthday card. We will be delivering this card to the United Nations and the UK parliament on Human Rights Day later this year, to tell those in power that universal human rights matter here at home: www.celebratehumanrights.uk