Leadership

Make HIV a national and local priority, and set a desire for England to be the first country to end new transmissions

HIV must be higher on the political agenda if we  are  to  achieve  our  goal . The  next  10  years present the country with an opportunity to beat this epidemic and make HIV a thing of the past .     Our commission was born of a statement of leadership by the Health Secretary, Matt Hancock, in January 2019:

“Today we’re setting a new goal: eradicating HIV transmission in England by 2030. No new infections within the next decade. Becoming one of the first countries to reach the UN zero-infections target by 2030.”

Matt Hancock, January 2019

This statement of leadership prompted Terrence Higgins Trust, National AIDS Trust and the Elton John AIDS Foundation to establish an independent commission and invite us to investigate how to achieve this target . This report now must form a solid basis for the work of the government’s HIV Expert Group in informing the upcoming national Sexual Health Strategy and HIV Action Plan.

At evidence hearings, stakeholders told us that they felt HIV was politically on the backburner, and not getting enough focus in the press needed to change public attitudes . We heard that without better leadership from politicians and the media, the public would continue to associate HIV with contagion and death . The COVID-19 pandemic has shown us what the consequences of a stretched public service can be if a crisis hits . The HIV epidemic offers an opportunity to show how political leadership and commitment could create a public health success story.

We have already explored the multiple complexities  in  HIV  care  across  England,  which  often means that multiple bodies and organisations share responsibility . While local leadership in some places convenes stakeholders,  responsibility  and  leadership  England-wide  is  lacking . The  Fast Track City model seeks to combat HIV by  ending  urban  epidemics  by  mobilising  local  political actors and stakeholders to achieve the 90-90-90  targets .  At  evidence  hearings,  we  saw  English Fast Track Cities at different stages in their journeys .  Brighton  and  Hove  was  the  first  Fast Track City in England, and stakeholders all reported that the HIV sector all collaborated well, with strong leadership from the city council facilitating this .  Manchester and Bristol both became Fast Track  Cities in Autumn 2019, and  in  Bristol  the  steering  group  reconvened  stakeholders  for  our evidence hearing.

“Being a part of the international Fast Track Cities Initiative has given us a real opportunity to learn from the rest of the world’s progress and start to disseminate our own learning and expertise to other partners.”

Brighton and Hove Fast Track Cities

Policy responses

As a country, we do not have nationally defined policy on HIV . There are recommendations, guidelines and aspirations around some components on the HIV continuum (for example, testing) but most decisions are made locally . In contrast, national-level strategies for prevention and management of HIV exist in all other nations of the United Kingdom.67

Following the implementation of the Health and Social Care Act 2012, having a strong policy foundation is more important than ever to achieve our 2030 targets . In particular, to provide clear guidelines on outstanding issues around commissioning, testing and delivery of HIV prevention interventions, including funding, responsibilities and accountabilities.

Fragmentation of the system has led to different parts not talking to each other meaning commissioning occurring in siloes or not happening at all (currently HIV support services and clinical nurse specialists do not have a commissioning home); HIV and sexual health clinical services no longer being located together which reduces access to important services, for example, screening.

In 2019,  NHS England published their Long Term  Plan outlining how £20 .5 billion would be spent  over 5 years. This did not make specific proposals for sexual and reproductive  health  but  did indicate that there may be a greater role for government and NHS to play in the commissioning of sexual health services considering it is so closely linked to NHS care.

The NHS’ Five Year Forward View demanded a radical upgrade  for  prevention  and  public  health that has not come into fruition . The Prevention Green Paper published in November 2018 outlined the government’s vision that ‘prevention is better than cure’.

While there are some clear challenges, there has also been some great progress in policy . In 2019, the government made a number of policy commitments on HIV; including ending new transmissions by 2030; to establish an expert group to develop an HIV Action Plan; to put in place routine commissioning of PrEP . Since September 2020 compulsory Sex and Relationships Education is being delivered in all schools, through which young people can be engaged on HIV prevention . Those successes should serve as the foundation for a nationally defined approach . Otherwise, we will continue to see variation in provision, creating a postcode lottery and exacerbating health inequalities.

Political leadership

One of the key learnings of the commission is that sustained political leadership is an essential component of any efforts to end HIV transmissions . Having the commitment of the Secretary of State for Health and Social Care to end new HIV transmissions in England by 2030 has been a good example of that . This commitment has opened doors and facilitated stakeholder engagement across the system. It is imperative that political leaders in the national and local arena continue to commit to ending new HIV transmissions . This will help coordinate efforts and allocate resources to achieve our common goals . They have the opportunity to develop and improve health systems,  allocate budgets and prioritise HIV prevention.

At a local level, directors of public health, mayoral offices  and  local  government  associations have a key role to play . They share diverse responsibilities for health and have strong convening powers . Those can be used to provide leadership around HIV in their local areas.

National political leadership is fundamental – directly at Cabinet level, and at senior opposition level, and through the Health Select Committee to ensure that the government is  held  to account . Locally, elected members including cabinet members with responsibility for health, and councillors who have an interest in HIV (or are in high HIV incidence areas) are particularly important.

Lack of accountability or shifting of responsibility  around  HIV  has  been  one  of  the  biggest barriers to progress . We have  witnessed  examples  of  how  “blame”  has  been  apportioned  to local government by national politicians, and vice versa . This does not help or improve our current systems and results in HIV not always seen as a local priority . There is a key need to raise up the agenda, especially in lower/middle prevalence areas as well as in some higher prevalence areas.

If we are to achieve our goal across the country, there must be overarching leadership from the top which commits to taking action to ending new transmissions across the country . Due to the complexity of the commissioning landscape of HIV and the shared responsibilities across the HIV continuum of care, it is imperative to have overarching oversight of the entire HIV response in England . In our written evidence, there is notable lack of reference to political leadership on a national level.

The government should not just continue to affirm its commitment to end new HIV transmissions by  2030 but should state its intention to be the first country to reach this goal and show new  impetus with an aspiration to end 80% of transmissions by 2025 .  Progress on these goals should be reported to parliament annually.

We need access to the relevant information to hold the government accountable on this goal . Actions towards the 2030 goal must outlive  political  cycles,  changing  ministers  and  other emerging priorities . The experience of HIV from the very beginning has been that information and evidence, accessible to all, enables  us  to  hold  those  responsible  to  account,  welcome  success and demand more progress . We think that having updated data on new HIV transmissions will be essential for this . Particularly, being able to compare data across populations will be essential to ensuring that we  tackle inequalities as we  make progress .  Being able to visualise this data will be a powerful tool to bring transparency and accountability while measuring our progress against targets, prioritise resources, and assess areas for improvement.

Justice system

In England, both reckless and intentional transmission of HIV are criminal offences.

A person may be found guilty of reckless transmission of HIV if it can be proved that they transmitted HIV to someone and they:

  • Knew they had HIV
  • Understood how HIV is transmitted
  • Had sex with someone who didn’t know they had HIV
  • Had sex without using appropriate safeguards.

A person may be found guilty of intentional transmission of HIV (or attempted intentional transmission) if it can be shown that they actually and maliciously wanted to pass HIV on .

Many HIV advocacy organisations worldwide oppose the criminalisation of HIV transmission, highlighting that laws are often not informed by the  latest  scientific  and  medical  knowledge relevant to HIV . The Global Commission on HIV and the Law in 2012  concluded that criminalisation is only justified in cases where transmission is both actual and intentional . Wider criminalisation, such as that of HIV non-disclosure and exposure, is “disproportionate and counterproductive to enhancing public health .”68

Submissions to our commission noted that there is no evidence that criminalisation acts as a deterrent or reduces transmission . Instead, it undermines public health efforts and perpetuates stigma .69

“If continued criminalisation results in just one person deciding against an HIV test, or one HIV service provider being unsure of the advice or support they should give, or adding to the burden of stigma already faced by people living with HIV, then the law needs urgent reconsideration.”

Carl Wonfor

It is important that a wider review of the law on reckless and intentional transmission is undertaken, as recommended within the scoping consultation by the Law Commission of England and Wales .70 Rather than supporting HIV prevention efforts, there are indications that fear of prosecution discourages people from testing for HIV, talking openly to their physicians or counsellors, or disclosing their HIV-positive status .71 Further, prosecutions for reckless HIV transmission unjustly target diagnosed HIV positive people for punishment and fail to reflect the broader shared responsibilities for sexual health and HIV infection .72 It is clear to us that harm reduction approaches to public health, rather than criminalisation and prosecution, are the best and most effective way to prevent new cases of HIV and improve lives.

“Harm reduction interventions should be scaled up to mitigate HIV risks among injecting drug users.”

Release

Those in prison and immigration detention centres may be more likely to be living with HIV. It is therefore crucial that these populations have  access to HIV testing, and that their HIV treatment is not interrupted by their incarceration.

Despite the fact that both types of incarcerated populations have a legal right to necessary health provision equivalent to that of those not in prison or immigration detention, evidence shows that access to testing and treatment can in reality be patchy and inconsistent .  If we  are to end new HIV transmissions, no one can be left behind in our response .

Local leadership

Local responsibility for public health forms the backbone of much of HIV care in England . Local councils make many of the decisions that determine the provision of services across the country.  Our evidence hearings in five  English  cities  highlighted  both  the  strengths  and  weaknesses  of this model . Where local authorities are proactive, work closely with community organisations and provide leadership, they form the core of an effective HIV response . Where the local authority commissioning is not carried out wisely, it has implications for the entire local response to HIV.

“In Herefordshire, a rural county, the main challenge is late HIV diagnoses. This is partially due to stigma attached to HIV infection and stigma in identifying as a man that has sex with men (MSM). For the same reason, stigma, there are periods of outbreaks of syphilis especially in MSM.”

Integrated Sexual Health Services for Herefordshire, Solutions 4 Health

Further to this, we often heard that where responses from urban areas are strong, neighbouring local authorities that serve more rural areas do not have the same provision . People served by rural local authorities often travel into cities for support and care . As HIV  changes over  the decade, success will be contingent on focused local action . This must go beyond places currently recognised as having high HIV prevalence, to areas where HIV has not traditionally been a priority, to ensure progress is equal across the  country .  Local  government,  the  community  sector,  Fast Track Cities, and regional level bodies like Integrated Care Systems all have a role to play in this. Local authorities must plan and coordinate these local efforts to end new HIV transmissions.