HIV Cure

Robert Fieldhouse

Editor

BASELINE Magazine

Context

• 34 million people living with HIV

• Inevitably fatal before 1996

• Advent of ART – Great improvements but Toxicities

• Stigma

• Normal life expectancy

Perspectives

‘To be cured? Honestly, why would I want that? I’ve lived with HIV almost half of my life. All of my peer group died but I survived and, through HIV, made many wonderful, new friends. HIV has made me the person I am today and has given me the most interesting life.’

Tom Matthews, Vice Chair AB Plus, Birmingham, UK, aged 65.

Patient Advocacy Perspectives on Cure Research

‘A cure exists and is being withheld.’

‘What interest do pharmaceutical companies have in developing a cure when they make so much money from HIV medicines?’

• Cure research is complex, myriad of small studies• The term itself has multiple definitions which confuses PLWHA• High motivation to take part in trials-

– altruism, – direct/in-direct health benefits, – financial reward, – to be in line to access something better

• A cure may not preclude an individual from reinfection• Why put limited resources into cure research when HIV treatment scale up has

further to go?• There may be a different perspective among adolescents who acquired HIV

perinataly?

How do patients hear about cure research?

How do patients hear about cure research?

• General Media: A reliable and scale-able HIV cure is likely years and not months away. It plays with people’s hopes and expectations in very negative ways to misstate the truth in order to get a good headline and generate debate in social media

• Better sources would be: • www.hivforum.org• www.projectinform.org (Check out their staff pets page)• www.treatmentactiongroup.org (Great listing of current clinical

trials, completed studies, observational studies, and completed studies)

• Community media should now begin to play a role in raising awareness among affected communities about cure research

• There is a great need for community education and training to raise cure strategy literacy

What are patients’ expectations on cure research?

• The context is one of optimism and disappointment:– The long-term diagnosed remember predictions that fully

suppressive ART would cure people in 8-10 years– Better to be a patient in Berlin than Boston but rather France (if

you start treatment very early)– Babies are special

• A long road ahead; realisable in my lifetime? • Will it be affordable, scalable? • Will there be access for all?• None of the interventions currently under study are

expected to cure people of HIV• Current studies are gathering info for future developments

What information do patients want from their physicians?

• The meaningful stuff- whatever that is…

• Help to understand complex concepts, terms and current strategies in clinical trial

• Reassurance to keep taking ART while studies are underway

• Help to ensure proper informed consent takes place if an individual joins a clinical trial

• Access to clinical trials

• Guidance to useful patient-friendly resources

Why might it be impossible? Latently infected cells- cells that are infected but then have gone to sleep- possibly for lifespan of person living with HIVReservoirWhat might a cure look like?Is it achievable? What role for early treatment?

What is a cure?

2 ways of thinking of cure ‘sterilising cure’- get rid of infection from body – The Berlin PatientFunctional cure- cancer model –but patient can control it- no disease progression.

Current work at Imperial College London

• Novel intervention studies

• Several different cohorts and trials- people who need chemotherapy are being followed

• What differentiates those who are likely to cure from those who are not?

• Funded to look at developing vaccines to get the immune system

• HDAC inhibitor plus vaccine in addition to ARV therapy

www.projectinform.org/pdf/HIVCureGlossary.pdf

Conclusions

• Believe we will see a cure in our lifetimes

• Hundreds of studies underway

• These are unlikely to provide cure but will provide insights

• Would you take part in a trial?

• Would you give up HIV meds during a study?

• A cure wont protect from reinfection