Written evidence submitted by the National AIDS Trust (CLL0091)

1. Introduction

1.1               National AIDS Trust (NAT) is the UK’s HIV rights charity. We work to stop HIV from standing in the way of health, dignity and equality, and to end new HIV transmissions. Our expertise, research and advocacy secure lasting change to the lives of people living with and at risk of HIV.

1.2               We coordinate a HIV/COVID-19 network – an informal group set up in response to the COVID-19 pandemic to facilitate intelligence sharing and problem solving across the HIV sector.

1.3               Below we provide an overview of the impact of COVID-19 on NHS and care services relevant to HIV, outline the impacts on particular groups, and outline some of the lessons learnt from the experiences to date to improve interventions going forward.

The impact of COVID-19 on clinical services

2.       Sexual health services
 

2.1          The capacity of sexual health clinics has been greatly reduced due to staff redeployment. The British Association for Sexual Health and HIV (BASHH) found that during the first wave, half of clinics were closed, and many moved to online/phone services, operating at under 20% face-to-face capacity.[1] Issues of low capacity continue.

2.2          Need is higher amongst those who are vulnerable or with complex needs and services note a sharp decrease in access amongst sex workers, victims of sexual and domestic violence and under 18s, with the latter group also not eligible for online testing. The shift to remote services suits these groups less as they have greater discretion and confidentiality needs. For some lockdown may also exasperate behaviours that increase risk of HIV, including chemsex-based sex work.

2.3          There is agreement across the main clinical and commissioning bodies that continued access for HIV testing for those at most risk is a priority. BASHH expressed concern that reducing core sexual and reproductive health services ‘to too great an extent will result in a negative impact on the sexual health and reproductive health of large numbers of individuals as well as placing a future financial burden on the NHS and other associated care providers.’  We know fast access to HIV testing and treatment has been key to decreasing HIV transmissions in recent years. Maintaining a level of testing provision is crucial.

2.4          Whilst some areas have increased access to online HIV and STI testing (home-sampling), local commissioning varies. This could be addressed by ensuring national availability of online testing. 

2.5          We were informed during lockdown that some local areas were not promoting online testing services that do exist. This was a result of unclear messaging about testing capabilities and judgments made locally about appropriate provision of services that could be seen to be taking away from the COVID-19 effort. It is our understanding that there remained capacity to continue a base level of HIV and STI testing. We believe there are significant ethical issues with not providing and promoting diagnostic and treatment services to those in need. A very different approach was taken in other areas.

2.6          56 Dean Street in London actively promoted HIV testing as an opportunity to ‘break the chain’ of HIV infection - diagnosing people who may have recently acquired HIV before there is any chance of them passing on the virus. PHE temporarily expanded access to the national home-sampling service to support this. However, this was for a limited period and was not intended to fill gaps in face to face provision.

2.7          Existing strategy and guidance on sexual health services have not necessarily been applicable but there is little direction from Government on what services people should be able to expect. Plans for a sexual health strategy for England are delayed. There is still a need for direction from Government in the interim, with action to protect the nation’s sexual health and mitigate risk of increasing HIV transmissions, urgently needed.

2.8          We also heard of communication from some clinics that people should not need to access PrEP and condoms on the grounds that they should not be having sex during lockdown.[2] While it is true lockdown measures probably decreased demand amongst some, there would always continue to be a level of need. Voluntary sector services reported people avoiding sexual health and sexual violence services due to concerns about being judged for breaching lockdown or confusion about what is open. There were anecdotal reports of people potentially exposed to HIV who could benefit from Post-Exposure-Prophylaxis (PEP), but who chose not to seek it.

2.9          During the early stage of the pandemic, 9% of clinics were unable to provide HIV prevention drug PrEP to those on the IMPACT Trial. Routine commissioning of PrEP in principle began in October, but many areas are struggling to implement it.              

The Government should:

• Clearly communicate how the public can continue to access sexual health services.
• Scale up digital infrastructure for sexual and reproductive care such as at-home testing – ensuring these are available in every local area.
• Develop a plan for reopening services that addresses a surge in demand after lockdowns and prioritises vulnerable groups, those with complex needs and those who cannot access remotely.

3.       HIV treatment services

3.1               Towards the beginning of lockdown, there was a lot of concern regarding those who are diagnosed with HIV but not on treatment as this may mean that they are immunocompromised. At the same time many HIV services reduced their number of sites, meaning that some of these people needed to travel further to access them, increasing time on public transport and highlighting difficulties funding travel costs.

3.2               Many other people living with HIV have moved to online or telephone consultations, with BASHH showing that face to face capacity in HIV treatment services was reduced to around 20%.[3] Again, this has its own accessibility concerns as some do not have access to a device or to internet/data. Some clinics and voluntary sector organisations have tried to find ways to fill this gap, but it’s vital that there is a more concerted effort from Government and industry to address digital poverty. In Scotland this has been prioritised and similar efforts are urgently needed in England, Wales and Northern Ireland.[4]

3.3               Monitoring tests for those with recent stable CD4 counts and viral loads have been paused to reduce visits to clinic. Further, some clinics advised that patients should have a month’s supply of HIV medications, others advise three or more. This is linked to a lack of clarity around supply chains for HIV drugs. Clinicians are now indicating that this should be resolved but it remains unclear to patients.[5]

3.4               Some people living with HIV are also struggling to have other health needs addressed. For example, trans people face specific barriers such as lack of access to hormone injections, cancellations of gender affirmative surgeries and frozen Gender Identity Clinic waiting lists. Perception of risk in accessing healthcare particularly affected BAME service users. Services report that the widely-discussed higher death rate from COVID-19 in this group led to reluctance to go to hospital.

The Government should:

• There should be stronger direction on how local decision makers should weigh up risk and allocate resources to effectively manage impact of COVID-19 without compromising the nation’s sexual and reproductive health. This should be proactive and outcomes focused.
• The Department of Health and Social Care should update regulatory frameworks to allow for prescribing of HIV treatment from any service and delivery route and remove the need for wet signatures on prescriptions.
• The Department of Health and Social Care should advise primary care practitioners to continue essential treatments for trans people.
• The Government should enact requirements on technology and internet data companies to provide fair access for vulnerable groups, with initiatives to provide free equipment and data.

4.              Mental Health and support services
 

4.1          Some people living with HIV already experience isolation due to stigma, including rejection by friends and family. This is compounded by a pre-existing high degree of anxiety, depression and other mental health difficulties among people living with HIV.[6] Poor mental health is linked to difficulties in adhering to HIV medication, subsequent ill health and drug resistance.
 

4.2          Specialist HIV support services go a long way to combatting this isolation, but these have been decimated by funding cuts.[7] Since COVID-19 they are seeing an upsurge across the board in requests for support including from people who have never accessed peer support before. People living with HIV are often reliant on HIV support services since they feel unable to share their HIV status in their local community through Mutual Aid Groups and other community enterprises.
 

4.3          Despite HIV organisations acting quickly to convert their services (e.g. peer support via Zoom), some clients lack access without working phones, data, phone credit or privacy, increasing feelings of isolation.

The Government should:

• Provide emergency funding for UK-wide mental health services and ensure a proportion goes to specialist service provision and support for online access.
• Take responsibility for ensuring vulnerable groups have online access to a support network, including those with no recourse to public funds. This could be modelled on the Scottish Government’s Connecting Scotland programme that identifies and provides data and devices to clinically high-risk groups [8]
• Recognise the increased demand on the voluntary sector during lockdowns and ensure financial support to adapt offers.

5. Government communications and public health messaging   

5.1          PHE guidance on social distancing and vulnerable groups on 16 March 2020, advised people with a “weakened immune system as a result of... HIV/AIDS” to shield, but no concurrent central guidance on what constituted this was published. This was a significant source of anxiety for people living with HIV: HIV Scotland reports that 83% of calls to its COVID-19 helpline between 16 March and 22 April included requests for HIV-specific guidance on COVID-19, and 76% included requests for advice about the risk of COVID-19 to people living with HIV.[9]
 

5.2          The British HIV Association (BHIVA) clarified that people with good CD4 counts and undetectable viral loads should not follow this guidance, advising it is followed only by those with a CD4 count below 50, a history of opportunistic infection relating to HIV within the last six months, or significant multi-morbidity.[10]

5.3          Shielding texts were also erroneously sent to people living with stable HIV and no other qualifying conditions on 7 and 8 April. This was down to healthy patients living with HIV being coded as ‘immunosuppressed’ at GP surgeries and consequently included in the dataset sent to NHS England’s Shielded Patients List. There was insufficient resolution from Government and, despite efforts of NAT and others to communicate the mistake, we know there are people who shielded unnecessarily after receiving texts.
 

5.4          Conversely, some experienced difficulty registering as ‘extremely vulnerable’ on account of a low CD4 count/unstable HIV. HIV is not one of the listed conditions on the government’s main portal and though GPs are able to make referrals, not all are aware of this responsibility. Similar issues are reported in the second lockdown.

The Government should:

• Fully consult specialist clinicians on guidance applicable to people living with long term conditions and in HIV adopt guidance laid out by BHIVA on shielding and HIV infection, ensuring all who need to shield are aware, and no one is mistakenly under the impression they need to shield.

6. Access to anti-body testing and future vaccine access   

6.1               HIV support organisations were contacted by people worried and frustrated at being exuded from the national antibody testing system, available through gov.uk, as they were living with HIV.

6.2               BHIVA and BASHH confirmed there is no clinical reason why people living with HIV should face a blanket restriction on antibody testing, or why antibody testing would be less clinically effective.

6.3               Following a joint letter from BHIVA, BASHH, the HIV CRG, HIV Scotland, National AIDS Trust, THT, UK-CAB and HIV i-Base, the Department for Health & Social Care (DHSC) agreed to lift the exclusion. At this time of submission, the testing website has yet to be updated.

The Government should:

• Ensure there are no blanket restrictions on antibody testing for people living with HIV.
• Ensure access to future forms of testing and vaccines are based on specialist clinical advice.

7. The impact of the pandemic on BAME communities

7.1               COVID-19 has disproportionately impacted BAME communities. Higher mortality rates have meant that BAME groups experience increased levels of grief over this period.

7.2               BAME-led HIV support services have seen an upsurge in direct requests for support including from those who have never accessed support before. One such service dealt with 500 calls in a week in March, when it typically deals with 600 calls a year.

7.3               In March it was reported that 9 out of 10 micro and small BAME organisations are at risk of closure as a result of the pandemic.[11] This follows years of funding cuts that had already reduced this sector’s capacity. Government support has failed to factor that some services are more impacted by the pandemic than others and it is worrying that many BAME organisations are facing financial insecurity when most needed.

7.4               BAME groups are more likely to suffer from poor mental health and face barriers accessing support services. These inequalities, combined with those in HIV (BAME groups are more likely to be diagnosed with HIV late and experience HIV-related illness and co-morbidities), means that BAME people living with HIV are particularly vulnerable to the negative impact of COVID-19.

7.5               More broadly people living with HIV are more susceptible to loneliness, isolation and anxiety as a result of lockdown. Increased periods without company, or among family or flatmates who may either be unaware of someone’s HIV status or subject them to discrimination. such as homophobia, makes people living with HIV feel unsafe. This is particularly the case for some BAME people living with HIV who are more likely to live in overcrowded multigenerational households where they may not feel comfortable sharing such details.

7.6               Many service users also report digital poverty with insufficient credit or no/limited access due to having to share a device with family members. Often people forego their own needs to allow children to access remote learning. This is particularly present for those living in poverty including some migrants from BAME groups. While some HIV support services have received funding to purchase data this is not sustainable.

7.7               Investment in public health has steadily reduced for years, aggravating inequalities, entrenching poverty and poor health. It was recently found that £1 in every £7 cut from public health services comes from the ten most deprived areas compared to £1 in every £46 in the ten least deprived.[12] NAT’s research into HIV funding in local authorities also highlights that it is not aligned with prevalence.[13] Simply put - money does not follow need.

The Government should

• Recognise the vital role of BAME-led community organisations that serve BAME groups and reflect this through funding.
• The Government must take heed of the findings and enact recommendations in PHE’s report Beyond the data: Understanding the impact of COVID-19 on BAME groups based on a review led by Professor Kevin Fenton.

8. The impact of the pandemic on people living with HIV

8.1               People living with HIV are recognised as having the protected characteristic of ‘disability’ under the Equality Act 2010. HIV disproportionately affects already marginalised groups, including those with other protected characteristics such as gay, bisexual and other men who have sex with men and BAME communities.[14] Other groups particularly at risk of HIV include people who inject drugs and sex workers. While these are not protected characteristics per se, women, BAME, disabled and LGBT people are often overrepresented in these groups.[15],[16]

8.2               Like HIV, COVID-19 is a disease which illuminates and exacerbates existing heath inequalities, as highlighted in the recent Intensive Care National Audit and Research Centre report into COVID-19’s disproportionate impact on Black, Asian and Minority Ethnic (BAME) communities.[17] Throughout this submission, we have highlighted the unequal impact that COVID-19 and its response is having on people living with or at risk of HIV.

The Government should: 

• Collect and publish health data on COVID-19 which is disaggregated by sex, ethnicity, disability and age in order to effectively plan and implement health interventions which take account of inequalities in infection rates, access to treatment and health outcomes.

For more information please contact Danny Beales, Head of Policy and Campaigns at National AIDS Trust

7