Stay informed with the latest facts on COVID-19 for people living with HIV in the UK

I am living with HIV. Am I at increased risk?

HIV if left untreated damages the immune system by reducing a person’s CD4 count (the white blood cells affected by HIV). Treatment stops this from happening, so people living with HIV on treatment often have good immune systems.

BHIVA is the British HIV Association, for HIV clinicians. It said on 25 March 2020: “There remains no evidence to determine whether people with HIV are at greater risk of COVID-19 acquisition or severe disease.”

However, if you have a low CD4 count (below 200) or a detectable viral load, it says you "may be at higher risk of severe illness.”

Furthermore on 25 May 2020 BHIVA released new information following case series from five countries showed "no clear evidence for a higher COVID-19 infection rate or different disease course in people with HIV than in HIV-negative people". 

Am I 'extremely vulnerable'? 

All of the below applies to people who have no symptoms of, and have not tested positive for, COVID-19 (coronavirus). If you or someone you live with has tested positive or has possible symptoms, you need to check this website for advice.

People living with HIV are classified as 'extremely vulnerable' if: 

· Your CD4 count is below 50; and/or

· You have had an opportunistic illness in the last six months; or

· You were advised to shield for another reason, for example, because you have another condition covered by the guidance or complex conditions.

Previously people classed as 'clinically extremely vulnerable' were advised to shield and may have received a letter from their GP or the NHS explaining this. 

Following the introduction of the three-tier system in England on 12 October 2020 the Government has updated its guidelines for those classed as 'extremely vulnerable'. 

The guidelines are slightly different for each COVID alert level across the country. The general principles across all levels include: 

  • Continue to maintain strict social distancing, wash your hands regularly and avoid touching your face.
  • Try to keep the number of social interactions that you have low. The fewer social interactions you have, the lower your risk of catching COVID-19.
  • Continue to observe strict social distancing with anyone outside of your household or support bubble. The more you socially distance from others, the less likely you are to catch COVID-19.

You can read the full guidelines here

This new guidance is for England only. You can find advice on shielding in 
Scotland, Wales or Northern Ireland via the links provided.   

The British HIV Association (BHIVA) has said: "If you are shielding because of HIV (very low CD4 count or recent serious illness related to HIV) and feel concerned or anxious about stopping shielding, we advise speaking to your clinic as the decision to shield is a very individual one." Read the full statement

There is a Shielded Patient List (SPL) held by NHS Digital. Being on this list may mean that you can access some additional services. Your doctor can add you to this list if you are not already on it but need to be. You can find guidance for HIV clinicians on how to do this here.

I think I’ve been told to shield when I don't need to

Some people with HIV have been added to the Shielded Patient List (SPL) in error. These people may have received text messages from government or letters from their GPs that have caused confusion and alarm.

The NHS has explained that this occurred because some people living with HIV are coded as “immunosuppressed” on some GP records. This code does not always mean you need to shield, but was one of the codes on GP records that was used by NHS Digital to put people on the SPL. This means that some people living with HIV with this code on their record were added to the SPL and told to shield (usually by text) by mistake.

GPs can override this code and update the list so that the person is removed if they have a CD4 count above 50, have had no opportunistic infections in the last six months, and have no other reason to shield. If you think you are affected by this then talk to your GP or your HIV clinician and direct them to this guidance.

The British HIV Association (BHIVA) and Terrence Higgins Trust (THT) have reiterated that "there is no evidence, nor guidance, that people with well-controlled HIV should shield."

What are my rights at work?

We have sought legal advice from Leigh Day on the employment rights of people living with HIV in the context of the COVID-19 pandemic, which we outline below.

What is the advice from the Government?

The present advice of the Government (as of 23 March 2020) is that people with HIV “who are at increased risk of severe illness from coronavirus [‘COVID-19’] be particularly stringent in following social distancing measures.” 

In addition, the British HIV Association and Terence Higgins Trust have advised that:

  • Those with a CD4 of less than 50, or who have had an opportunistic illness in the last 6 months, class themselves as extremely vulnerable and take appropriate precautions. This means staying at home and avoiding face to face contact for 12 weeks. 
  • Those with a CD4 of less than 200 or not on ART follow social distancing advice stringently.
  • Those with a CD4 of greater than 200 and undetectable on ART follow general advice on social distancing

It is also worth considering if you have other health conditions which may increase your risk of severe illness from COVID-19. 

This will particularly impact those whose jobs necessarily involve a degree of social contact. People who need to stay at home, as result of the increased risk to them, ought to be eligible for Statutory Sick Pay [‘SSP’] even if they are not personally unwell. SSP is paid at a rate of £94.25 per week. You may also request that you are given a temporary leave of absence covered by a new government scheme (see ‘what should my employer be doing for me?’ below).

Should I speak to my employer?

If you are concerned that you are at a particular risk, in particular if your immune system is presently weakened, you may wish to inform or remind your employer of your HIV status and request that they put procedures in place to mitigate any risk to you.

Your employer should not subject you to any detriment for making such a request nor should they subject you to any detriment merely because you have HIV.

What if I don’t want to tell my employer I am living with HIV?

The best way to ensure that you have the full protection of the law is to tell your employer you are living with HIV. You can request that such information is kept confidential, under GDPR rules, and that it is shared amongst the minimum number of people necessary for you to be assisted to carry out your role.

If you feel unable to disclose the exact nature of your condition you may wish to seek a fit note from your GP.* This may simply be a recommendation that you self-isolate for a period of time given the functional impact of your condition. Ideally it should also state that this condition has lasted or will last for more than 12 months in order to assist in framing your condition as a disability under the Equality Act 2010 [‘EA 2010’]. In addition or alternatively, since HIV is automatically classed as a disability under the Equality Act you could ask your GP or HIV clinician to state in the letter that you have a condition protected under the Equality Act 2010. 

Your employer should comply with the recommendations of a registered medical professional however ideally the letter would disclose your condition to ensure that you will benefit from protection under EA 2010.

What should my employer be doing for me?

Your employer should be ensuring that you are able to work as safely as anyone else and have access to the same job opportunities as your colleagues, unless there are very good reasons why this is not possible.

In response to COVID-19 this may include:

  • Allowing you to work from home
  • Allowing you to temporarily work in a role that minimises your contact with the public
  • Providing you with access to personal protective equipment
  • Allowing you to socially distance yourself from colleagues and the general public
  • Allowing you to self-isolate
  • Giving you a temporary leave of absence (‘furlough’) deploying payments of 80% of your salary (up to £2,500) available from the government.

What legal protections are available to me?

There are various legal protections available to assist you in ensuring that you are able to work in a healthy manner and to protect you from exploitation by your employer.

It is important to remember that given the present situation enforcing rights may become difficult. There are pressures on businesses that may see them cease operations and there are likely to be delays in progressing matters in the Courts for some time. If you think you have experienced discrimination from your employer, do get in touch with NAT and we can provide you with advice and signpost you to further sources of support.

Equality Act 2010

If your work is in England, Scotland or Wales your employer is bound to follow EA 2010. According to the Equality Act, HIV is defined as a disability from the point of diagnosis. You do not need to view your HIV as a disability in order to be protected by this law.

The following protections are available under EA 2010 if your employer knows you are living with HIV:

  • Direct Discrimination – the right to not to be treated less favourably because you have a disability. For example, your employer dismisses you because you tell them that you have HIV
  • Discrimination arising out of a disability – where a person is treated less favourably as a result of something that has happened because of their disability. For example, your employer disciplines you for taking time off work due to a requirement to self-isolate.
  • Failure to make reasonable adjustments – where an employer fails to amend policies that put disabled people at a disadvantage. For example, you request to work from home but your employer refuses to allow you to do so.
  • Harassment – subjecting disabled people to a hostile, degrading or intimidating working environment. For example, you ask to work from home due to your HIV status and your manager tells you to stop being soft.
  • Victimisation – subjecting disabled people to negative treatment because they have tried to assert their rights under EA 2010. For example, you are disciplined for not being a team-player after making a request to work from home.

You are also protected from indirect discrimination even if your employer doesn’t know you are living with HIV. Indirect discrimination is where your employer has a policy that puts disabled people at a disadvantage. For example, your employer refuses to let people work from home despite the fact this would have a minimal impact on productivity.

A failure to comply with EA 2010 could give rise to a legal claim worth thousands of pounds so this can be an important tool to ensure that you are treated fairly by your employer. 

Health & Safety at Work Act 1977 & Management of Health & Safety at Work Regulations 1999

Under Health and Safety legislation you are required to take reasonable care for the health and safety of yourself and other people. At present, this may be interpreted as a requirement to share your HIV status to your employer if it puts you at an increased risk.

Your employer is under a duty to do everything that is reasonably practicable to ensure that you are safeguarded while you work. Your employer ought to be proactive in minimising any risks to you.

Risk assessments should be carried out to ensure the safety of your employer’s staff and service users and these risk assessments should be kept under review. Clearly the issues thrown up by COVID-19 would indicate that risk assessments should be updated to ensure your safety as an employee.

Employment Rights Act 1996

Sections 44 and 100 of the Employment Rights Act 1996 (ERA) provide protection for employees (but not workers) against both detriment and dismissal in cases involving health and safety issues in the workplace. 

If you are so concerned about health and safety at work that you do not attend or choose to leave/cut short shifts, you could be protected under this legislation. Your employer is under a duty to ensure that your workplace is safe, if they fail to do so you are entitled to raise any issues with them without the fear of being treated badly as a result. If you refuse to subject yourself to a situation you genuinely and reasonably consider to be dangerous you should review the circumstances before doing so, this would include your own knowledge of the situation, the facilities available to you and any authoritative advice. You must be careful to ensure that any action you take is not negligent in the circumstances.

If you are briefed regularly on the dangers you face at work, are provided with all the necessary equipment (face masks, gloves, other protective clothing) and allowed proper breaks and rest periods it would be – from an objective point of view – a mitigated risk. However, if you are regularly working without proper protection, are unaware of what measures are in place to keep you safe and are genuinely afraid for health and safety you could fall under the scope of this law.

 As our understanding of Covid-19, and the associated risks, is rapidly changing issues such as an appropriate level of protection, and what constitutes ‘circumstances of danger’ will be contentious issues.

*If you have not shared with your GP that you are living with HIV, speak to your HIV clinician to see if they can help. Please note that in Scotland, only GPs can issue fit notes. If you have symptoms of COVID-19, or are living with someone with symptoms, you can get an isolation note from the online 111 service.

HIV COVID-19 Network Briefings

National AIDS Trust, with support from partners in the HIV sector, is producing a fortnightly briefing on the impact of COVID-19 on people living with HIV and communities affected by HIV.

We want to ensure this is a valuable resource that provides a snapshot of the key issues, highlighting the emerging data and analysis from those on the ground that can inform and improve the Government and sector's COVID-19 response.

Read all released briefings here.

Where can I get more information?

National AIDS Trust’s Looped in tool can help you produce and download information to share with your employer. You might find this particularly helpful if you are speaking to your employer about your HIV for the first time. Looped in now includes a specific topic addressing issues related to HIV and COVID-19.