Chiva Conference workshops set the record straight on legal rights, medication adherence and sexual wellbeing for youth living with HIV

The 19th Annual Chiva Conference on 4 April 2025 featured three insightful workshops that tackled different aspects of living with HIV. The National AIDS Trust (NAT) led an engaging session on legal rights of people living with HIV. Another workshop explored the psychological and practical challenges adolescents face in adhering to HIV medication. And a third focused on young people’s sexual health and specific considerations for professionals supporting young people living with HIV. 

Daniel Fluskey and Lindsey Ponsonby from (NAT) ran a workshop on HIV and the law which got attendees exploring different case studies and legal scenarios.

Scenario 1: A person living with HIV who arrived for a dental appointment was moved to the end of the day due to “cleaning” concerns and later deregistered after raising a complaint.

Legal Issues Identified:

  • Data breach: Sharing of HIV status in a public setting.
  • Discrimination: Unjustified delay violates universal precautions and may breach the Equality Act.
  • Victimisation: Deregistration following a complaint could constitute this under the law.

Recommended Actions:

  • File a complaint with the dental clinic.
  • Report to the healthcare regulator and the ICO (Information Commissioner’s Office).
  • Seek legal advice (6-month window for Equality Act claims). Legal cases are rare; advocacy by NAT and others can often resolve issues informally.

Scenario 2: After sharing their HIV status with a manager, an employee experiences intrusive questioning and is refused flexible working hours. The Manager creates an online calendar invite to discuss and references HIV which colleagues see. Employee starts to be treated differently in the workplace. 

Legal Issues Identified:

  • Failure to make reasonable adjustments (likely unlawful under the Equality Act).
  • Harassment: Intrusive personal questions.
  • Data breach and direct discrimination

Recommended Actions:

  • Raise a grievance within the organisation.
  • Contact ACAS and/or trade union rep.
  • Submit a complaint to the ICO.
  • Consider legal action (3-month time limit).

Scenario 3: A man is taken into a police station for questioning, accused of HIV transmission, despite having an undetectable HIV viral load and knowing the accuser had multiple partners.

Legal Considerations (Prosecution for Reckless Transmission can only happen if all conditions are met):

  • Knowledge of HIV status.
  • Understanding of transmission risks.
  • Risky sexual behaviour (e.g., unprotected sex).
  • Actual transmission occurred.
  • Partner was unaware of the HIV status.

Note: Being undetectable and having an informed partner are strong defences.

Dr Tomás Campbell, Consultant Clinical Psychologist & Neuropsychologist at the Royal Hospital Donnybrook and two Chiva young adults together facilitated a lively discussion about adolescent medication challenges.

There are complex issues that can be barriers to taking daily medication, including: daily reminder of HIV through taking meds; difficultly if the regimen is more than one pill; competing priorities such as exams and family issues; not wanting to feel different to friends or having to explain meds to others; self-stigma; feelings of unfairness or incarceration; side effects; don’t believe that meds work; haven’t become sick yet; a relationship changes; transition clinics don’t always work; not taking meds as a form of rebellion or simply forgetting meds.

Some potential solutions discussed included: to try to normalise HIV – for example telling the young person that they’re probably not the only one in their class or year group affected by HIV; make medication a priority and a routine; setting alarms or reminders on phones to encourage earlier responsibility for meds rather than relying on parents/carers; making the transition from paediatric to adult HIV care more seamless; psychoeducation to help understanding of what happens if not adherent to HIV meds; psychological support; peer support; safe discussions with a preferred clinician who has got to know the patient well.

In terms of family/social issues, the importance of working with social services and continued long-term enjoyment of contact was discussed. 

Dr Nell Freeman-Romilly and Katherine Whitaker from Oxford University Hospitals ran an engaging workshop on young people’s sexual health. The pair began by emphasising that STI testing needs to be ‘normalised’ to encourage regular testing. Even if someone has no symptoms it’s still okay to get tested every three months and after every partner change. 

If a young person living with HIV is immunocompromised, there is a potential additional risk of STI infections and complications. Young people should be made aware of risks of non-STIs such as Shigella.   

Young people should be reminded that contraception is free in the UK but that some HIV medications can affect hormonal contraception and emergency contraception. Clinic teams may be asked to change a young person’s HIV medicine, so it works better with the contraception of their choice.

The workshop included a useful reminder that there is a three-dose schedule of the HPV vaccination for people living with HIV. 

Participants were encouraged to ask young people what they would like to talk about at each contact. This may lead to conversations around sexual consent. In instances where young people disclose sensitive information about a potential event where consent was not given it’s important to listen and mirror their language. This will build trust and make the healthcare setting feel like an open and safe space to talk. It’s also important to ask whether that person in question is still in their life; when this took place and what they want to happen next. This will help determine what services you need to signpost or refer the young person to. 

If you’re not a sexual health professional, conversations do not have to be explicit, but if you can be a person that they feel comfortable talking to, that can be a lifeline.   

The three workshops provided attendees with knowledge, strategies, and practical tools to better support young people living with HIV.