Transformation

Build a health and HIV care system which can take advantage of innovation.

Progress in HIV prevention and treatment has not been consistent across the last four decades . It has occurred in stages, with ‘disruptive innovations’ causing leaps in improvements .15 The early days of treatment, the discovery that U=U (that people with an undetectable load “can’t pass it on”) and PrEP (the  HIV  prevention  drug,  pre-exposure  prophylaxis)  have  been  game-changers in our response to the epidemic, and have together contributed to the lower rates of new transmissions in recent years, and the gains we’ve seen . It is important that the health system is able to take advantage of these and future innovations quickly and effectively.

The COVID-19 epidemic will change HIV treatment . As all of us moved to life restricted to our homes, practitioners across the continuum of HIV prevention and care innovated at unprecedented speed to move services online as much as possible . Although small steps towards increasing digitalisation were already underway, this time change happened fast as many parts of prevention and treatment went virtual for the first time . No one really knows what the lasting consequences of COVID-19 will be for our society, but we  can say with certainty that we will not be returning to the old normal.

HIV testing

Free and confidential HIV testing is available for everyone, regardless of immigration or residency status, through open access  sexual  health  services  (SHS) .  Guidance  also  recommends  free testing in a variety of other settings including, primary care, secondary care, prisons, community settings and online . In reality, however, implementation of guidance is patchy and testing is not routine or universally accessible to all . There are some paid for testing services, online or through pharmacies (such as HIV self-tests), but these are restricted to those who know about and can  afford them . HIV testing informs people of their HIV status – enabling  people  living  with  HIV access to treatment and stopping onward transmission .

Accountability for delivery of HIV testing, and who pays  for  it,  is  another  victim  of  the fragmented healthcare system in England and the split between primary care and public health commissioning . Solving this problem is a priority so we can find everyone living with HIV, ensure they have access to the lifesaving care they need  and  deserve,  and end  new  transmissions  by 2030 . It is the single most important change needed to meet this goal . Everyone should know their HIV status . This will require a significant upscale in HIV testing opportunities across online, community and healthcare settings . It must become a routine and expected part of every person’s interaction with the healthcare system, with inclusion of HIV in blood screens being normalised . The increased opportunities for testing for other blood borne viruses (BBVs) would be an additional benefit of this change .

Opt-out HIV testing in antenatal services

There is one real success story in NHS HIV testing . Maternity  services  have  mainstreamed  HIV testing and deliver the service in a non-judgemental environment with remarkable results . Opt-out testing for HIV is routine for pregnant women and there is now a 99% testing coverage . This has  been an incredibly effective way of diagnosing women  living  with  HIV  of  reproductive  age  who may not otherwise have tested . Women who are diagnosed during pregnancy can start treatment, improving their health outcomes and preventing vertical transmission (the rate is now less than 0 .5% in the UK) . However, antenatal testing alone does not reach all women and other initiatives have so far been woefully inadequate at reaching women .

Despite various initiatives, elsewhere the picture is not one of routine or mainstream testing.

HIV testing in sexual health services (SHS)

In 2019, overall HIV testing  coverage  was  only  65%  in  specialist  sexual  health  services,  which are the foundation of any HIV testing strategy . While this represents a continued increase in HIV testing in this environment, this has been largely driven by  increased testing of gay and bisexual men (GBM) . We can and must do much better .

Of the 549,849 people not tested for HIV  in  a  specialist  sexual  health  service  last year,  46% were not offered a test and the remainder declined testing . This means over a quarter  of  a million people who accessed a sexual health service were not even offered a test . These were overwhelmingly women, and disproportionately women of colour . This is also reflected in those who declined a test . Heterosexual women were more likely than heterosexual men to decline a test (25% vs 13%) and, according to Public Health England, “few GBM declined testing

(4%), in contrast to 20% of Black African heterosexual women and 9% of Black African heterosexual men .”16 In 2008, the British Association for Sexual Health and HIV  (BASHH),  British  HIV  Association (BHIVA) and the British Infection Association (BIA) developed national testing guidelines that recommend universal HIV testing in sexual health services and promote the normalisation of routine HIV testing . It is the view of this commission that the BASHH, BHIVA  and BIA guidance must be implemented with haste . No one should leave a sexual health  clinic  without  being offered an HIV test and up-take should be dramatically  increased  so  that  refusal  is  an exceptional event .

HIV testing in other healthcare settings

National Institute for Health and Care Excellence (NICE) guidance on increasing testing uptake (2016), recommends testing in a broad range of settings . In areas of high or extremely high local HIV prevalence (more than 2 per 1000 in the population and 5 per 1000 respectively), NICE calls for testing on registration in primary care and in secondary and emergency care (hospitals and A&E) to everyone who is undergoing blood tests for another reason . BASHH, BHIVA and BIA guidelines further support this, recommending that testing is opt-out and routine in many parts of the NHS .

“Providing HIV testing to all patients attending the emergency department, regardless of social group (gender identity, ethnicity, religion or sexuality) in areas of high prevalence has a significant role in reducing the stigma
associated with testing and the potential diagnosis of HIV.”

Guys and St Thomas’ NHS Foundation Trust

At evidence hearings across the country, we were  told  time  and  time  again  by  stakeholders that the NICE guidelines for testing provided a good framework for testing strategies but were  not being followed . Urgent implementation of these guidelines, not just in hospitals and A&E departments, but also GP surgeries, is needed .

As we  heard in our evidence sessions, one of the major barriers is funding, both in terms of clarifying responsibility and accountability, and in terms of making the necessary investment available .

Who pays? The clinical or public health commissioners? This confusion has gone on too long and  has led to a hotchpotch of initiatives and models in different areas with mixed success and poor coordination and integration across services .

As well as the pressure on the limited public health grant, economies of  scale  don’t  support localised routine testing . As we make progress towards our goal of ending HIV transmissions the number of people we  need to test compared with the diagnoses made will inevitably increase .  If  we  are doing our job right, the positivity rate of testing will decrease, along with overall incidence   of HIV . This is not a reason to slow testing down, as returns on investment appear smaller, but to double-down efforts . The upscale in testing that is needed cannot be simply absorbed to local- level responsibilities and budgets . Only action from the Department of Health and Social Care can solve this problem. PHE data indicated that local initiatives have led to an increase in testing in some A&E departments . As a result of this increase in testing volume, the positivity rate decreased from 1 .3% to 0 .6% .17  But positivity rates are still higher in A&E than in most settings . A&E HIV testing has again been boosted by the fact many trusts included HIV testing in their A&E COVID-19 testing protocols – a welcome development . However, there is a real concern that without further incentive and national policy direction, this will not be sustained.

It is the view of this commission that it will need more than clarity about commissioning responsibilities, there needs to be new funding made available both for existing bodies involved in testing, as well as a national HIV testing programme that will drive this agenda forward and coordinate implementation with those involved in delivery of testing locally and nationally .

Improving access to testing: evidence from Lambeth, Southwark and Lewisham

The Elton John AIDS Foundation’s Social Impact Bond (SIB) funds HIV testing in the London boroughs of Lambeth, Southwark and Lewisham, with opt-out testing in A&Es, regular testing in GPs practices, and targeted testing by community groups . The three-year programme takes an outcomes-based approach and aims to increase HIV diagnoses and engagement into care . This is done in partnership with local NHS bodies and the three councils with some of the highest UK HIV incidences . The whole project is supported by funding from The National Lottery Community Fund and the London Borough of Lambeth.

In 2018 there were an estimated 1,000 people unaware they had HIV in Lambeth, Southwark and Lewisham .18 Over 140,000 HIV tests have been delivered on an opt-out basis in A&E departments through the SIB, changing the conversation from ‘do you want a HIV test’ to  ‘we  routinely  test unless you ask us not to’ and thus vastly increasing the acceptability of HIV testing to patients. Consequently, from October  2018  to  September  2020,  130  people  were  newly  diagnosed with HIV and started treatment . A further 107 returned to HIV care after a substantial break in treatment – an important outcome helping this group reduce their viral load so they ‘can’t pass it on’ and have improved health personally .

The SIB’s activities highlight the importance and effectiveness of: one, opt-out HIV testing in emergency departments; two, regular testing by GP practices offered whenever blood is taken or at new registration; three, community organisations acting as a bridge to engage vulnerable people in HIV testing; and, four, dedicated audit and recall systems to re-engage people disconnected from HIV care.

These interventions improve the health of people living with HIV, reduce future HIV transmission, and generate cost savings for the public purse . Finally, initial modelling on the SIB  programme shows that these testing and engagement  interventions  create  significant  savings  to  the  NHS from two sources – reduction in lifetime costs of care for people living with HIV through earlier engagement in treatment, and avoidance of future transmission and the lifetime care costs that each new patient incurs . Linking data about the lifetime costs of treatment for people with HIV, the likelihood of HIV transmission and the likely number of sexual partners each year, suggests that each person living with HIV who is engaged into care may save the NHS an average of £12,200 a year on reducing transmissions . Assuming that the SIB reaches a total of 340 people by programme end, this would save £4 million in costs each year if all patients remain in treatment . Further research is planned to validate these findings and expand analysis to include savings from the individual receiving earlier treatment.

Expanding the scope of routine HIV testing

The evidence from the SIB underpins why HIV testing must be increased in A&Es and primary care across all areas with high or extremely high incidence of HIV as soon as possible . But this will not be enough to end new transmissions completely and we need also to look beyond areas of high and extremely high prevalence to reach everyone . Cost savings will be less in areas of lower incidence due to the higher level and costs of testing required to reach each undiagnosed person living with HIV . Again, this is not a reason not to do it . A national approach to investment and coordination could support routine HIV testing at this scale and expand it beyond (but including) areas with the highest prevalence.

A national testing programme should also prioritise the exploring and enabling of testing in non- mainstream services that are more likely to be accessed by  those who face broader inequalities and marginalisation. This should include termination clinics, as per NICE guidelines 2016, while doing cervical screening and at gender clinics. Pharmacies are an ideal intermediate location, especially in towns and rural areas, where other services are not nearby or home sampling/testing is not desirable . There is currently no charge backs agreed for pharmacies when doing HIV testing[RA2], and this needs to change .

All of these services are potential opportunities to make PrEP available to those less likely to have access to sexual health services or unaware of PrEP availability and its benefits . To be able  to provide PrEP, HIV testing needs to be available in all these settings .

The Testing Traffic Light

Below are examples of some healthcare services where the HIV Commission believes HIV testing should be provided . Green indicates that normalised HIV testing is policy and practice, currently in antenatal screening; amber indicates where there is direction to test but application is not thorough nor routine; red indicates areas for HIV testing to take place to meet the 2025 target for 80% reduction in new transmissions,  the  2030  goal  to end  HIV  transmissions  and  the  aim for England to be the first country to eliminate HIV transmissions by 2030 . This improved testing situation would be necessary to make PrEP available to all groups.

ServiceCurrent Policy and GuidanceResponsibilityImplementationTo Reach 2030 Goal
Maternity services / antenatal screeningOffered to all women on opt-
out basis as part of the Infectious diseases in pregnancy screening (IDPS)
programme.
Funded nationally by NHS England through Section 7A agreement.99% testing coverage.
Transformative results, almost eliminating vertical transmission and dramatically
increasing the proportion of women diagnosed.
Continue current practice.
Identify factors in success
and learning for increasing
uptake elsewhere.
Sexual health services (SHS)NICE 2016 guidance – all
should be offered on attendance.

BASHH, BHIVA and BIA
guidelines 2020 – universal testing on an opt-out
basis.

Local authorities through
devolved public health grant.
In 2019, only 65% testing coverage across SHS attendees.

Almost half (43%) of those not tested were not offered a test.
Implementation nof opt-out HIV testing to all SHS attendees.
PrisonsNICE guidance on HIV testing
and physical health of people
in prison, both 2016 – all people should be offered
an HIV test on an opt-out basis.
Joint commitment by NHS England, add National Offender Management Service (NOMS) and PHE through their Partnership Agreement on healthcare in
prisons.
Mixed implementation.
In 2018 77% were offered a test with only 44% uptake. Testing practice is unlikely to be truly opt-out when it is in place.
Test positivity rates are higher than other settings (1.2%).
Renewed efforts to implement true opt-out testing for people entering prison in England.
A&Es in areas of high or
extremely high local HIV
prevalence
NICE Guidance 2016 – all should be offered on admission and in routine blood tests.
BASHH, BHIVA and BIA 2020
guidance – all patients accessing should be offered a test and recommends an opt-out approach.

BASHH, BHIVA and BIA 2020
guidance – testing should be done in secondary care when clinically indicated.

BASHH, BHIVA and BIA 2020
guidance – testing should be done in secondary care when clinically indicated.
Unclear responsibility with some local authorities funding through the public health grant.
Some STPs/ ICSs have implemented across admissions during
COVID-
19.

CCG funded when clinically
indicated.
Not routinely implemented across the country. Difficult
to collect data on testing in this setting due to differential data collection/reporting
mechanisms.
Challenges around both funding and implementation at a local level.
Implement opt-out HIV testing for all emergency and secondary care admissions
and/or when bloods taken, starting in high and extremely
high prevalence areas.
All people presenting with HIV indicator conditions should be
offered an HIV test.
Hospitals in areas of high or
extremely high local HIV
prevalence
As aboveAs aboveAs aboveAs above
GP surgeries in areas of high or extremely high local HIV prevalence2016 NICE guidelines – all should be offered a test on admission.
BASHH, BHIVA and BIA 2020 guidance – all patients accessing should be offered a test and recommends an opt-out approach.
BASHH, BHIVA and BIA 2020 guidance – testing should be done when clinically indicated.
Unclear responsibility – Some local initiatives funded through the local authority public health grant.
Funded by Social Impact Bond
in Lambeth, Southwark and
Lewisham.
CCG funded when clinically
indicated.
Poor implementation though has been done on an ad hoc
basis. Difficult to collect data on testing in this setting due
to differential data collection/reporting mechanisms.
Key to increasing testing to those less likely to access an STI clinic – women, Black communities and other ethnic minorities and those living outsid cities and big towns.
Challenges around funding responsibility and nervousness amongst GPs around offering HIV tests have been barriers.
Implement opt-out testing
for all new registrants at
GP surgeries.
All people presenting with HIV indicator conditions should be
offered an HIV test.
During cervical screeningAs aboveAs aboveNo current guidance but is an opportunity to reach women living with HIV who have not been pregnant or acquired HIV post-pregnancy.Offered to women and people with a cervix as part of
the service.
A&E in areas of low or medium local HIV prevalenceNICE guidance 2016 – recommends testing on admission for key populations, those reporting
possible risk or when clinically
indicated.
Unclear responsibility.
CCG funded when clinically
indicated.
Not routine. High levels of late diagnosis (common in lower prevalence areas) and
look back data indicate that people are also being missed who present with indicator conditions.
Difficult to collect data on testing in this setting due to differential data collection/reporting mechanisms.
Sometimes available to purchase in pharmacies.
An intermediate location for those, especially in towns and rural areas, where other services are not near or taking a home sample/test alone is not desirable. Would
help make pharmacies a place to access PrEP.
HIV testing should be routine on an opt-out basis for anyone receiving a blood test and on admission.
All people presenting with HIV indicator conditions should be
offered an HIV test.
PharmaciesNICE guidance 2016 – recommends community testing in pharmacies in areas of high or extremely high prevalence.
No system of charge back for
the pharmacist to undertake this work.
Sometimes available to purchase in pharmacies.
An intermediate location for those, especially in towns and rural areas, where other services are not near or taking a home sample/test alone is not desirable. Would
help make pharmacies a place to access PrEP.
Free HIV tests should be accessible through pharmacies and POCT should be offered where practicable.
Termination
clinics
NICE guidelines 2016 recommend testing on first attendance and repeat testing.
BASHH, BHIVA and BIA guidance 2020 – all patients
accessing should be offered a test and recommends an opt-out approach.
Unclear
responsibility.
Not routinely implemented.
This will also be necessary for this setting to become a place to access PrEP.
Opt-out HIV testing should be routine.
Addiction and substance misuse servicesNICE guidance 2016 – routine
HIV testing in ‘drug dependency services’.
BASHH, BHIVA and BIA guidance 2020 – all should be offered a test and recommends an opt-out
approach.
Local authorities through the
public health grant.
Unclear but commissioning
framework doesn’t support routine testing in these settings.
Some done as part of broader BBV testing initiatives. PHE reports high level of missed opportunities to diagnose people living with HIV who inject drugs.
HIV testing (as part of BBV
testing) should be routinely
provided on an opt-out
basis for those accessing
addiction and substance
misuse services.

Testing outside traditional healthcare settings

Most of the above has been focused on increasing and normalising testing opportunities in healthcare settings . This is, however, only one piece of the puzzle . Online and community testing play a vital role . In 2019, PHE reported that 25,514 self-sampling test kits were returned via the national HIV self-sampling scheme alone [7] . Community HIV testing describes testing which is generally led by voluntary and community sector organisations and that is delivered by and for communities it targets . PHE has in recent years tried to capture data on community testing to demonstrate the contribution and impact .  35,095 tests were reported through PHE’s  ‘Survey of   HIV Testing in Community Settings’ in 2019 [xiv] [8].

Test reactivity in self sampling and community tests was 0 .5% in both services . This compares with 0 .2% in specialist sexual health services, 0 .6% in A&E departments, 0 .3% in GPs in extremely high prevalence areas and 0 .7% in prisons . Community testing services are a proven tool in reaching people who are not accessing traditional health services .19 Well designed, community-led and culturally competent testing can overcome some of the barriers to testing we  see such as concerns around stigma, lack of trust in services, or low perception of personal risk .  It also provides opportunities to open up conversations about HIV and sexual health, providing a gateway to broader services.

At a local level, funding of  community  testing  is  highly  inconsistent . Targeted  peer-led  design and delivery is critical but it can be difficult to achieve economies of scale and this does not fit easily with the direction of travel towards larger scale integrated sexual health service contracts .

Community testing is often de-prioritised or traded-off against online testing – but these are not an either/or but rather are services often meeting different needs that are both critical components to a whole-systems approach to testing .

National AIDS Trust’s Community Testing Toolkits, developed with experienced providers across England, are an invaluable resource for community organisations and funders to design and evaluate good HIV testing interventions. Local commissioners need to be supported through a national HIV testing programme to appropriately invest in them to the necessary extent to drive innovation in this area.

Optimising online and community testing

Availability of online testing is dependent on local authority buy-in to the variety of services available (including the National Home Sampling Service and the London Sexual Health Programme) . Terrence Higgins Trust runs HIV Prevention England (the national HIV prevention programme) and coordinates National HIV Testing Week – the only time that online testing is available for free across the country apart from for a limited time during the COVID-19 pandemic . It has significantly increased traffic to online self-sampling services . COVID-19 showed how critical online options are when there are limitations on face-to-face services (which are experienced by some people all the time) . It should not take a pandemic to make online HIV Testing an accessible option, available to all.

HIV Prevention England has similarly  supported  greater  engagement  with  community  testing at a local level . Local commissioners and community organisations have been able to leverage the national resources and momentum generated through HPE and testing week to increase engagement with their services . This is an example of how a  national  programme  can  support local amplification of HIV testing interventions . It was shown to be successful at reaching key populations, gay and bisexual men, Black African communities and first time testers . This impact could be increased with greater investment to extend reach.

“I live in an area where STI testing is otherwise only available from a clinic that’s open for 3 hours once a month. I’m physically disabled and
can’t get there easily. Being able to get tested at home is so much less taxing on my health, and I appreciate it being an option.”

SH:24

In addition, Terrence Higgins Trust has been running an online self-testing service for HIV since 2016, supplying more than 43,000 tests since launch . It has demonstrated clear demand and acceptability for self-testing among its target audience. 12% of orders have been from Black African people . Unlike self-sampling, users read their own result at home and are prompted to report their test results, with more than 60% doing so.

Since 2018, Terrence Higgins Trust’s self-testing service has also offered a free Click and Collect option, with 4,000 collection points across the UK . This has been used by nearly 10% of those ordering, including 13% of Black African people and 13% of BAME men who have sex with men (MSM) . It is clear, both self-testing and Click and Collect options for broader postal testing have a role to play in improving access.

HIV testing beyond key populations

Increasing the visibility of HIV testing to a wider audience is also critical and should be a core component of national investment . According to PHE, “While Black Africans remain one of the main groups likely to be diagnosed with HIV amongst heterosexuals, they only constitute about 40% of heterosexuals diagnosed with HIV in 2018 . There isn’t a clear strategy or plans to effectively target the other communities from which the 60% of new diagnoses amongst heterosexuals came from in 2018 .” Again, the necessary effort and investment to meet this challenge cannot be achieved by simply carrying on as we are . Local areas are not equipped with the necessary resources or tools to reach the testing capacity that this challenge demands .

Opportunities to identify undiagnosed HIV are hugely limited by the current system and its approach to testing . We must find those who are not yet diagnosed to reach our goal and this will take a radical upscale in HIV testing . HIV  testing  must  become  standard  in  healthcare, with increased opportunities for screening programmes, such as in emergency departments .

Not being offered or turning down an HIV test should be an exceptional event . This requires a significant shift in emphasis to opt-out rather than opt-in testing . Structural problems within the NHS that prevent this from being funded must be resolved through national support . This will reduce the number of late HIV diagnoses and prevent onward transmission, while also supporting re-engagement into care for those who need it . COVID-19 and the ‘test and trace’ moment has demonstrated the importance of numbers when it comes to testing and this is now something that resonates with the public . Now, more than ever, it is vital that upscaling testing efforts is at the core of our HIV response.

“A number of people did not want to self-test and would strongly prefer to go to a service where they could also have a conversation about their sexual health.”

LGBT Foundation

We are recommending that testing become routine and an opt-out approach is adopted because a single approach to upscaling testing efforts will not address the inequalities in our testing systems .

COVID-19 has accelerated an already emerging trend  towards  digitisation  of  services .  At  the time of writing, some services have resumed face-to-face appointments as COVID-19 measures change, but further lockdown risks reversing this progress . The All-Party Parliamentary Group on HIV and AIDS report on COVID-19 and HIV21 found that ‘emerging anecdotal22 and survey evidence23 indicates that some sexual activity did continue throughout the crisis and that it resumed faster than services returned’.

The potential for more technology to become part of a care pathway has only increased as a result of the changes brought about by  COVID-19 . As this happens, we  again must be sensitive to the fact that this provides different barriers to access, particularly related to digital poverty.

UK-CAB’s survey about the experience of COVID-19 in June 2020 found that 9% of people surveyed would not feel comfortable talking to their doctor over the telephone, with many indicating that this was because they had not shared their HIV status with people they lived with .24 As digital ‘telehealth’ approaches become increasingly commonplace, we must consider this, and not adopt a one-size-fits all approach to care but give people more options.

We  also learned there is a need to increase community testing as part of our HIV testing options. It can be particularly effective at addressing stigma and encouraging people to test . Stakeholders in Brighton and Hove were incredibly proud of the Martin Fisher Foundation’s award-winning HIV test vending machine in the city’s saunas .25 The machine, supported by the Public  Health England’s HIV Innovation Fund grant, enables the quick collection of demographic  information, as well as giving users the option to input further information on sexual history, experience of testing and HIV result.26  A further four vending machines have  now been rolled out in the city, with 885  tests carried out . This is one example of a  particularly  innovative  way  of  community  testing,  but we  heard of many others . The key is that testing in communities can be targeted and flexible, and so as the HIV epidemic continues to change across the next 10 years, it must be an essential part of a universal testing strategy . Online testing and telehealth offer us an opportunity to greatly reduce spatial inequalities, particularly between cities and rural areas . We heard from many patients and support services emphasising that care accessibility is unequally distributed across the country.

“I have to travel a 50-mile round trip to my nearest HIV specialist … I am employed and struggle making the journey.”

Carl

This is a clear barrier to accessing care, particularly when people living with HIV need to have clinic appointments at least twice a year . Kernow Positive Support and Integrated Sexual Health Services for Herefordshire Solutions 4 Health both emphasised the different barriers faced by rural communities in accessing HIV prevention and care.27 In Herefordshire, low HIV prevalence leads to late diagnosis, amplified by stigma around testing and HIV . Similarly, Kernow Positive Support which supports communities in Cornwall, highlighted how hard it is to raise awareness and reduce stigma in rural communities . This is not just a problem in the countryside, but nonetheless one that we heard prevents access to care . There is significant variation in services across cities too: with an attendee in Bristol reminding us that while the city has good support services,10 miles away in Bath it was a hugely different picture.28

Adopting new technologies

Alongside adopting innovation in testing, we must be able to adopt improved prevention and treatments as they emerge . We heard how those living with HIV and members of higher risk communities are still deeply cautious of getting excited about new treatments and prevention methods which could be game-changers, because  of  the  experience  of  delayed  PrEP commissioning . Initially, NHS England argued that it would not fund PrEP, arguing that prevention was not part of its commissioning  responsibility.  After  a  landmark  legal  challenge  by  National AIDS Trust  in 2016  and a wide-ranging campaign involving many organisations and activists across the HIV sector, the Court ruled that NHS England could legally commission PrEP in England . NHS England accepted responsibility for commissioning the drug, with local authorities responsible for prescribing and managing a programme, via their  commissioned  sexual  health  clinics .  Following this decision, NHS England began a  large-scale  three-year  implementation  trial  of  PrEP (the IMPACT trial) in 2017, eventually making PrEP available to up 26,000 people . Places were allocated around the country but demand for PrEP and available places on the trial did not always correlate, resulting in at least 15 people on waiting lists becoming HIV positive .29 There are lessons from the PrEP roll out in other countries that also needs to be considered when making policy going forward.

The experience of having to use the law to force the NHS to consider commissioning PrEP remains a fresh example for many that just because something is cost-effective and proven to reduce the risk of HIV, does not mean it will be accessible.

“The sector must learn lessons from the delayed routine commissioning of PrEP and improve the relationship between NHS England and local authorities to ensure non-delayed access to future HIV preventatives.”

UK-CAB

When people have access to a range of options, take up increases as different methods meet different people’s needs, as is also true with contraception .30 New biomedical prevention technologies, including vaccines, different formulations and methods of delivery of PrEP and antiretroviral medications (such as via long-acting injection or implant) are in development and likely to be licensed before 2030 and are important further tools in our shared aim to end new transmissions . Delays in commissioning PrEP show that in order to deliver new medical technologies quickly and widely, planning must begin before they are ready for us . New delivery methods may make adherence easier for both HIV treatment and prevention and may also be more discreet, making it more acceptable to people .31

While there is no certainty on timings for new innovations in the pipeline, options that could be available in the next 10 years include:

  • New antiretrovirals
  • Implants of PrEP and antiretrovirals
  • Injectable PrEP and antiretrovirals

While England has been in the forefront of HIV treatment and prevention, the lack of a national PrEP programme has impacted the nation’s reputation as a world leader . Lessons from this experience should inform any future commissioning of biomedical interventions, including considerations of structural capacity and budgets. The roll out of any new prevention and treatment options requires concurrent awareness raising.

Partner notification

As progress is made in locating those with an undiagnosed HIV infection, the people remaining undiagnosed will prove harder to find . Strengthening the delivery of effective partner notification – where trained health workers ask people diagnosed with HIV about their sexual partners or drug injecting partners, and with their consent offer them an HIV test – will be an essential response  to this . Partner notification is an incredibly effective tool for diagnosing HIV, but is often not prioritised by commissioners of sexual health services.

In England in 2019, 1,705 people attended sexual health services for an HIV test as a result of partner notification, with an overall positivity of 4 .6% . This is 30 times the HIV test positivity rate in specialist sexual health services overall (0 .2%) . This much higher testing positivity rate means it is likely that partner notification is cost  effective  compared  with  general  testing  policies .  As new cases of HIV become increasingly less common, partner notification will become even more valuable in our efforts to trace people who may have had contact with HIV . This is  a  complex activity, which requires skill and resources.

Contact tracing is not new to sexual health, but in recent months it has also become a central  part of the government’s strategy for controlling the spread of COVID-19 . We hope that changes in public awareness of this strategy created by the ‘test and trace’ moment will support partner notification efforts, as virus control becomes a bigger part of all our daily lives . We must capitalise on this opportunity to normalise HIV testing and partner notification as part of virus control, as this strategy will become even more important as the numbers of undiagnosed HIV infections fall.