In 2021 it was 40 years since the first official report of HIV.
Around the globe it was an opportunity to mark the anniversary, and to reflect on the HIV journey and where we are going with HIV as a community. World AIDS Day on 1 December became a focus for commemoration. Australian organisations adopted the national theme of 40 years of HIV – where to next?
HIV IN THE BLEEDING DISORDERS COMMUNITY
For the bleeding disorders community this is a deeply significant question.
Many have been affected by HIV. A significant number of people with bleeding disorders acquired HIV from their treatment products in the mid-1980s. Treatment product safety is now greatly improved and the risk of bloodborne infection from products derived from blood is extremely low. However, the impact of HIV has been profound: on the people who acquired HIV, and also on those who have been close to them – their partner, family, friends – on the health professionals who have cared for them, and on the bleeding disorders community generally.
Families who are new to the bleeding disorders experience may be unaware of this history. In a way this was a silent epidemic. For the bleeding disorders community, HIV was a traumatic experience and many experienced discrimination, or feared it. As a result, HIV was often not spoken about in the community and even within affected families.
However, HIV is an important part of our community’s history. It drew on the resilience that was already a strong element in this community and led to a resolve to respond as a community, taking on effective advocacy around safer treatments and providing support.
Today, with the advances in treatment, HIV is considered a chronic manageable condition and with effective treatment the viral load can be undetectable.1
Where to next with HIV? is a timely question for us as a community.
REFLECTIONS FROM PEOPLE LIVING WITH HIV
We are grateful to community members with haemophilia and HIV who shared their thoughts with us.
Anth McCarthy prepared a special reflection for World AIDS Day 2021:
Neil Boal gave a picture of where he finds himself today.
THE BLEEDING DISORDERS HIV HISTORY
In 1981 AIDS (acquired immune deficiency syndrome), a new health condition, was first reported in Australian newspapers and the first case of AIDS was formally diagnosed in 1982. In the mid-1980s the bleeding disorders community in Australia and internationally was deeply shocked when many people with bleeding disorders were diagnosed with AIDS after acquiring HIV through their plasma-derived clotting factor treatment products.
Jenny Ross AO, former HFA Executive Director, recalled the moment when one of the Haemophilia Treatment Centre Directors rang her with the news. She had expected to discuss the success of their recent conference and was stunned by what he had to tell her.
Former Director of the Queensland Haemophilia Centre, Dr John Rowell began his journey in haemophilia care as the new Haemophilia Consultant at Royal Brisbane Hospital in 1984. Reflecting on this time and the years that followed, he described the challenges of HIV and the tragic loss of life, and then the moments of optimism, with ground-breaking new HIV treatments becoming available in 1996 and advances in haemophilia treatment generally.
Dr John Rowell
In the mid-1990s HIV treatment changed dramatically: the introduction of combination antiretroviral therapies for HIV which combined drugs from different classes – known then as Highly Active Antiretroviral Therapy (HAART) – provided effective suppression of viral load and improvements in individual immune function.
As a result of the HIV epidemic, there were also significant changes to haemophilia treatment product safety. In Australia:
- from the mid-1980s new processes were introduced to eradicate bloodborne viruses (including HIV) when treatment products are manufactured
- in 2004 recombinant (synthetic) treatment product became available for all, as an alternative to treatment products made from the plasma in human blood.
HFA’s Getting Older report documented the ongoing impact of this epidemic on our community. While HIV treatment and bleeding disorders treatment product safety have improved greatly, there has been and continues to be trauma and health challenges for those who were diagnosed with HIV and now live with the consequences, and grief and sadness experienced by those who lost loved ones, friends and patients to HIV.
This time remains very painful for many people, families and carers in our community.
A SUPPORTIVE ENVIRONMENT
Living with a bleeding disorder can have its challenges and peer support is valued by many. The bleeding disorders community has an approach of pulling together. It is a diverse community with an aim of valuing everyone for their mutual support, inspiring stories, and shared lived experience.
There has been an ongoing conversation in the community about support for community members with HIV and those who have loved them and cared for them: what would they like to see in peer support?
They have said that acknowledging and hearing their experiences is immensely important. Creating an environment where our members with HIV can thrive also involves recognising and respecting individual preferences: some prefer not to dwell on the past; some choose to be private and not disclose their HIV; some find it very difficult to think about the future.
Our Foundations are committed to making sure their community activities provide a supportive and inclusive environment, which takes all of this into account.
WHERE TO NEXT?
In Australia HIV infection is now usually well-managed with treatment, but while some people with bleeding disorders and HIV are going well, others have more complex needs. HFA has outlined ways of addressing this in our Getting Older report recommendations. If you would like to read and understand more, we encourage you to read the sections on bloodborne viruses in our Getting Older report. (browse the full report – bloodborne viruses feature in several sections)
We recognise the very positive contributions people with bleeding disorders and HIV continue to make in our community, in spite of all their experiences: the inspiring optimism and generosity of individuals with HIV, not only providing support to their peers with HIV, but empathy, leadership and a way forward into the future for the whole community.
WHERE TO FIND MORE INFORMATION AND SUPPORT
If this has raised any questions or sensitive issues for you that you want to discuss further, you may wish to contact:
- The Haemophilia Social Worker, Psychologist or Counsellor at your Haemophilia Treatment Centre (HTC)
- A counsellor or someone else you can trust. Your HTC or your GP can give you a referral if you need one
- Lifeline – ph 13 11 14
1. Bopage R, Couldwell D, Page M. Long-term management of antiretroviral therapy. June 2021. In Australasian Society for HIV, Viral Hepatitis and Sexual Health Medicine. HIV management in Australasia: a guide for clinical care. Accessed 18 February 2022.