Presentation on HIV treatment and cure research, presented by Robert Fieldhouse at the Positive Persons' Forum in Glasgow on 21 February 2014.

1. HIV Cure
Robert Fieldhouse
Editor
BASELINE Magazine

2. Context
• 34 million people living with HIV
• Inevitably fatal before 1996
• Advent of ART – Great improvements but
Toxicities
• Stigma
• Normal life expectancy

3. 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.

4. 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?

5. How do patients hear about cure
research?

6. 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

7. 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

8. 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

9. 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 HIV
Reservoir
What might a cure look like?
Is it achievable?
What role for early treatment?

10. What is a cure?
2 ways of thinking of cure
‘sterilising cure’- get rid of
infection from body – The Berlin
Patient
Functional cure- cancer model –
but patient can control it- no
disease progression.

11. 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

12. www.projectinform.org/pdf/HIVCureGlossary.pdf

13. 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