Written by Joe Tanzer, Community Engagement Worker for BHA for Equality (November 2022)

A Fear of the Unknown

Even those of us who weren’t yet alive in 1986 are aware of the public health campaign AIDS: Don’t Die of Ignorance. It was one of the biggest public health campaigns ever in the UK. In the televised advert, the letters A I D S are slowly carved onto a gravestone, whilst an ominous voice tells us that sex leads to almost certain death.

It’s pretty scary, and confusing; not least because the campaign, which says “Don’t Die of Ignorance”, actually teaches nothing about HIV, the virus which can lead to what used to be called AIDS (Acquired Immune Deficiency Syndrome).

There was of course very little knowledge of HIV at that time. The campaign didn’t have as much knowledge to work with as we do now. However, although the campaign’s main intention was to educate, it led instead to fear and blaming. That fear has become so ingrained in our cultural memory that many of us still associate HIV with death, secrecy, and shame.

HIV today

The truth is that HIV has become a treatable and manageable health condition. A person living with HIV, who is on treatment, can live a long, healthy life. Their medication suppresses the amount of virus in their blood to virtually ‘undetectable’ levels. When someone’s HIV is ‘undetectable’ this means it is also ‘untransmittable’. Someone living with HIV who takes their medication cannot pass on their HIV to anyone else, even if having condomless sex. Isn’t that amazing?

There’s been no such public health campaign on the same scale as Don’t Die of Ignorance around these positive messages. However, the charities that make up the PaSH Partnership (George House Trust, LGBT Foundation, BHA for Equality) all use their energy and resources to ensure that people throughout the UK have access to this information.

HIV in the Workplace

People living with HIV are doing amazing things. Today, there are no barriers to the workplaces they can access. People living with HIV are surgeons, doctors, dentists, and nurses. They carry out life saving work every day.

People living with HIV are also fully fit and able to be deployed with the armed forces overseas. This barrier was overturned in July of this year, thanks in part to the amazing activism of Lt Cdr Oliver Brown. People living with HIV are also teachers, hairdressers, tattooists, carers, chefs. They are unemployed, they are self-employed. They are homeless. Today, people living with HIV struggle and thrive, just like everyone else. 

The National AIDS Trust (NAT) did some research and found that, for the majority of respondents, HIV had no impact on working life. HIV is just one of a number of chronic illnesses that employers and employees live and work with. Medication often consists of one or two pills a day, with little side effects.

HIV in the Workplace: Reasonable Adjustments

A small proportion of people living with HIV in NAT’s report HIV at Work did identify some reasonable adjustments that an employer could make to assist them at work. In the vast majority of cases these adjustments were inexpensive and easy to accommodate.

The most common requests for adjustments were for time off to attend hospital and clinic appointments, flexibility in working hours, and the request to occasionally work from home.

Someone living with HIV will attend a clinic once every six months in order to ensure that they are tolerating their medication, and that their viral load remains undetectable.

There are a variety of medication regimens that someone living with HIV can take. The side effects are usually mild, though an employee may need support if switching or starting their treatment. Each person’s reaction to medication is different, therefore it is important to understand what support a person needs by asking them.

It is good practice to ensure that information about how to access reasonable adjustments is made available to all staff at an early stage of their employment. This reassures them that their workplace wants to support people with protected characteristics. Living with HIV is protected as a disability, even if the person living with the virus does not identify as disabled.

HIV in the Workplace: Confidentiality

Someone living with HIV is under no obligation to share their diagnosis. This means that, if someone shares their status with you at work, they are doing so because they choose to. You do not need to share this information with anyone else. It could be that the person has told you in order to request a reasonable adjustment.

Remember: someone living with HIV is not a risk to you or to anyone else at work. The most important thing is to ensure the well-being and support for the person sharing their status.

If someone shares their status with you, listen to them, make them feel safe and accepted, and ask them how you can best support them.

Remind them that they are protected under the Equality Act 2010, and that the employer cannot share information about the employee’s diagnosis without their consent. If a record needs to be kept, manage this information as you do all confidential information. Consider how and where it is stored, who needs to know, and for how long the information is required. 

At most, and only if necessary, the manager or employer may need to state that “we have an employee working with us whose immune system is compromised” or “who has a health condition” or “who is part of a vulnerable health group”.

Ending HIV Stigma

HIV is now relatively easy to manage. However, living with HIV can still carry a stigma that other illnesses, such as cancer, and diabetes, do not.

It is important that employers take proactive action to raise awareness of HIV and of sexual health. Employers can commemorate World AIDS Day; they can turn to PaSH to provide HIV awareness training; they can provide information on local sexual health services. In this way, we can work together to ensure that we are all living well.

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For more information about the services offered by PaSH, or to book an HIV test, visit https://gmpash.org.uk/

If you have questions about this article, please email joe.tanzer@thebha.org.uk or pash@thebha.org.uk