Chiva conference 2022 highlights
Evolution of Clinical Care, Prof Gareth Tudor Williams (Imperial College Healthcare NHS Trust)
Gareth Tudor Williams talked about how far we’ve come in clinical care for people living with HIV, starting from 1986 when there was the ‘tombstone’ public health campaign and when ignorance and lack of evidence was a significant stumbling block in terms of awareness/stigma.
In 1997, data from the European Collaborative Study looked at survival of children with HIV over the first six years of life. About 20% of children LWHIV in Europe had died by age six.
Gareth was working in the US in the 1990’s when the ACTG 076 trial showed that Zidovudine (ZDV) reduced vertical transmission of HIV from 25% to 8%. This was the first evidence of any kind of treatment for prevention of transmission of HIV. Since then many more ART therapies have been developed.
U=U in 2017 described as one of the big game-changers, meaning that HIV became a very different issue. However, the work is not finished. The evidence from the cohort who are now in their 20s and 30s shows that growing up with HIV is still fraught with difficulties including implications for mental health. He stressed the importance of putting the patient at the centre of care and the need for peer support alongside medical care.
Past & Future – Paediatric HIV Research Perspective, Prof Diana Gibb (MRC Clinical Trials Unit at UCL)
Di Gibb talked about the barriers researchers needed to overcome to get evidence about the role of drugs in management of HIV and prevention of vertical transmission in the 1980s and 90s when so little was known.
A review of some key clinical trials over the years was shared….
The first treatment trial of azidothymidine (AZT) in adults happened in 1987. Shortly after this a similar study involving children was run. AZT showed a better survival rate compared to a control group but it was only one drug and it had short lived benefits.
Di Gibb was working at GOSH when the PENTA 1 trial took place, trying to identify whether early or delayed treatment was most efficient. Wide media reporting about this being controversial had an impact on the researchers involved.
In 1998 a series of articles in the BMJ showed that the UK was doing badly in terms of antenatal HIV testing which involved asking mothers stigmatising questions about their lifestyle. Only 10-20% of HIV cases in pregnant women were being picked up. The Department of Health decided that there should be the universal offer of HIV testing alongside testing of other things such as syphilis. This resulted in a rapid increase in detection of HIV in pregnant women.
The PENTA 5 trial involved three drugs: abacavir, lamivudine, zidovudine with/without nelfinavir which led to licensing of abacavir + lamivudine for children living with HIV in 2002. It was also found that immune recovery is easier in young children than adults.
The CHER trial in Africa was stopped early after it clearly showed a fourfold reduction in mortality when ART therapy started around six months of age compared to when it was started at the onset of symptoms.
Recent results from the recent global ODYSSEY trial were shared showing superior efficacy of dolutegravir-based ART, as compared with standard care, in children and adolescents starting first-line and second-line ART.
HIV cure, Prof Sarah Fidler (Imperial College London)
Sarah Fidler presented an insightful talk updating us on developments in working towards an HIV cure.
Recognising how enormously impactful ART has been, but exploring how latently HIV infected cells persist and as such are unaffected by ART. These are referred to as the HIV reservoir. These cells have integrated the virus within their genome, and can become the source of viral rebound once ART is stopped. Current research is exploring the role of antibody, gene and cell therapy in HIV.
Distinguishing what we mean by ‘cure’ and explaining ‘sterilising’ and ‘functional’ cure. Whereas virus elimination with the sterilising cure (such as that represented by Timothy Brown) is extremely difficult to achieve, a functional cure (remission) seems more plausible suggests Sarah. In this approach the intervention achieves control of viral replication without the need for ongoing treatment.
To summarise the journey of treatment and cure development as we move into the age of long acting treatments there is some way to go and there is ongoing complexity in the development of cure modalities, but inspired by what we have seen ART achieve over time as treatments have increasingly improved, we were given hope of what can be achieved in this exciting area of research.
Positively Spoken – HIV Oral History Project, Dr Wendy Rickard (Oral Historian) and Eli Fitzgerald (from the project delivery team)
Wendy Rickard and Eli Fitzgerald explained why the Positively Spoken project is so important. Since the late 1980’s, sound recordings telling the unique stories of people who acquired HIV have been collected and safely stored at the British Library Sound Archive. Positively Spoken is for the first time capturing the stories of people who were born with HIV. These stories are insightful, important and should also be preserved for future generations to learn about. The project is well underway with 12 interviews taking place so far.
Chiva Youth Committee Symposium, Chiva Youth Committee
Chiva Youth Committee (CYC) members shared their experiences of living with HIV and their journey with Chiva. Some said that Chiva helped them to find more people to connect with and relate with about the struggles of living with HIV and taking medication, and that they now consider these people as family. It was said that Chiva helps families to become more open with each other about their status. Chiva ensures that young people develop an understanding, knowledge and skills/support to live with HIV freely without the fear of stigma and discrimination.
In the past year the CYC have achieved: speaking at Parliament; making smaller working groups e.g. a campaign group; and making their own resources to educate people about HIV and give advice.
One such resource they have developed is a leaflet called ‘Steps to Success’, giving practical tips for professionals working with young people living with HIV.
The Journey of Chiva Support, Amanda Ely (Chiva CEO)
Sharing the storing from when Chiva was born in 2002, when a group of paediatricians recognised that children and young people who were growing up with HIV needed specialist support and focus outside of the wider HIV organisations and associations which were focussed on adults with HIV. From the beginning the focus at Chiva was on children’s rights to receive optimum treatment and care and for the needs of the whole family to be thought about. Moving on and in 2008 Chiva became a registered charity and the direct work programme providing support and resources to children young people and their families began, whilst continuing to work with professionals, and provide guidelines, resources and educational activities.
Participation is at the heart of Chiva and the Youth Committee are integral to the organisation, with further participation opportunities developed over the years leading to a range of roles in project delivery, volunteering at camp, facilitation, held by young people and young adults who have grown up with HIV.
Expansion in the past two years has enabled us to build more support in different UK regions all year round working closely with clinic teams, as well as continuing to build our programme of national activities and residentials for young people to attend.
Looking forward Chiva is moving into adult care and support, and as young people grow up we will continue our support, hence the re brand we undertook this year to reflect this transition. Conference attendees were asked what they thought Chiva should strive to achieve in the next 20 years with a range of responses from ‘ending stigma’, expanding support to different geographical locations, camps for older YP, and support in communities. Education was shared by many people as something we should focus on, as well as suggestion for more international work.
UNAIDS Global AIDS Strategy, Eamonn Murphy (UNAIDS)
Eamonn Murphy gave an update on how the HIV epidemic is being tackled worldwide. Global targets for 2020 for deaths and new infections that were committed to by a collective partnership of countries and communities were not achieved. Children continue to be left behind. Children living with HIV are much less likely to receive treatment than adults (54% v. 74%). 800,000 children living with HIV were not on treatment in 2020.
The UK government has signed up to the 2021 Political Declaration on HIV and AIDS, making commitments for the UK. All the governments that have signed up to this have set targets that they collectively need to work towards.
The Global AIDS Strategy released in 2021 addresses a number of issues and aims to help achieve the targets set in the Political Declaration on HIV and AIDS. It calls for adolescents living with HIV to know their status and be immediately offered and retained in quality, integrated HIV treatment and care that optimise health and well-being.
Separately, the Global Alliance to end AIDS in children by 2030 is new. It’s an alliance of stakeholders at global, regional and national level that can bring about rapid and meaningful change for children, adolescents and women affected by HIV, eliminating vertical transmission and ending AIDS in children by 2030.
Eamon Murphy concluded that there needs to be a renewed effort to take action to address country-specific inequalities which will involve different programmes of work to end pediatric HIV and AIDS.
Where are Young People Going? HIV Adult Clinical Care 2022 and Beyond, Dr Laura Waters (Central and North West London NHS FoundationTrust. Chair of BHIVA)
Laura Waters discussed HIV clinical care for adults, and what the future looks like for young people who have grown up living with HIV.
The BHIVA draft guidelines are currently look identical to the main set of guidelines in the US (DHHS guidelines). Preferred for first line therapy are the second generation integrase inhibitors in three-drug combinations with the exception of dolutegravir where a two-drug combination with lamivudine is also recommended.
Laura Waters says that there are lessons that can be learned from the COVID-19 pandemic regarding easier access to treatment for patients, for example getting medications to people’s homes. There were drive-through medication pick-up points for patients during the pandemic.
There are clear benefits for long acting injectable treatments, but there will be challenges implementing them. Injections in clinics every two months will need to be planned very carefully. It needs to be an informed decision by patients. They need to know that by year three there is a 1 in 40 risk of a detectable viral load despite a 100% adherence.
Laura Waters talked about how different people respond very differently to different doses of drugs and stated that the application of genetic sequencing could mean that in the future we will see truly individualised therapy.
In England there is a big move towards Integrated Care Partnerships (regional groups with primary care at the centre to try to manage long-term conditions in a more holistic way).
From CHIPS to CHARS – The Future of Paediatric HIV Surveillance, Helen Peters & Kate Francis (Integrated Screening OutcomesSurveillance Service)
We had an update from the Integrated Screening Outcomes Surveillance Service (ISOSS) team. Paediatric HIV Surveillance is an important piece of work collecting and disseminating data of children living with HIV. There are 15-25 new cases of HIV diagnosed in children per year in the UK. Having these kind of figures helps us learn so much and informs clinical care. It also helps inform global data.
Supporting Young People to Move into Adult Clinics: Facilitated Discussion
This panel discussion, including paediatric and adult health care professionals, explored the experience of supporting young people transitioning to adult care and the complexities this can present emphasising the need for holistic approaches and flexible care arrangements. A case study of a young person who was in care as a child and disengaged from adult care post transition illustrated some complex challenges around achieving successful transition. Highlighting how multi agency and multi disciplinary collaborative approaches are key.