A forward perspective
Suzanne O'Callaghan is HFA Policy Research and Education Manager
Photo right: Dr Paula James presenting on women and bleeding disorders
The Conference theme of Looking forward to change gave a very positive direction for many of the sessions and raised important questions. What issues are we facing now and into the future? How can we address them in a constructive way and to the benefit of the bleeding disorders community? Presenters, panels and delegates looked at these questions and discussed the strategies that might work best.
HEP C AND HIV
Chair: Suzanne O’Callaghan
A personal story of hep C treatment - Simon
Hepatitis C update - A/Prof Joe Sasadeusz
HIV clinical update - A/Prof Edwina Wright
A personal story about living with HIV - Anthony
In the hepatitis C and HIV session the clinical experts had simple but powerful messages.
A/Prof Joe Sasadeusz described the enormous changes in hepatitis C treatment: it is now a curable disease and the new treatments are simple, have few if any side-effects, have high success rates across different populations, including those with cirrhosis and HIV/HCV co-infection – and are available to all on the PBS in Australia. He pointed out that there is the possibility of drug to drug interactions for people on other medications, but this is quite manageable. His key messages: the bleeding disorders community can aim to eradicate hep C; and he made a plea to all to come forward for treatment if they haven’t done so yet.
HIV has turned another new and positive corner. A/Prof Edwina Wright presented the latest studies showing that with antiretroviral therapy (ART) for HIV and new PreP (pre-exposure prophylaxis) treatment HIV transmission can effectively be prevented. It was welcome news to hear the confirmation from the Centers for Disease Control that people taking ART and with an undetectable HIV viral load “have effectively no risk of sexually transmitting the virus to an HIV-negative partner”. This gives a strong basis to challenge the stigma and discrimination associated with HIV in the wider community.
The legacy of blood borne viruses is felt deeply in the bleeding disorders community. Decades of pain, ill health and unsuccessful treatment; the loss of family and friends; and the worry of stigma and discrimination.
Simon’s personal story acknowledged this and the concerns of some people with bleeding disorders who haven’t yet accessed treatment; and that, ironically, after all the difficulties he had faced with hepatitis C, the treatment that cured his was so simple and ordinary – just taking a tablet a day with no side-effects that he was aware of. On World AIDS Day in 2016 Anth made a very significant personal decision: after nearly a lifetime of secrecy, to disclose his HIV status to the world – with the intention of overcoming HIV stigma. Simon and Anth’s personal stories are published in this issue of National Haemophilia.
Where to next? Those attending the session made felt it was time to make a commitment as a community to support those who are considering hepatitis C treatment and having doubts, or living with HIV. Suggestions included encouraging community leaders affected by HIV or hepatitis C who are happy to disclose to speak up and be visible so that those who do not wish to disclose publicly can connect privately or know they are supported.
WOMEN AND TELLING OTHERS
Chair: Sharron Inglis & Kathryn Body
Navigating Employment and Insurance ~ Kim Shaw
Telling others – personal stories
Haemophilia – Sharron
VWD - Susie
Panel discussion and Q&A
The Women and Bleeding Disorders session highlighted the complexities of diagnosis for women and girls with bleeding disorders. Dr Paula James from Canada had noted that there is thought to be a substantial number of females with bleeding disorders who have not yet been diagnosed, and Australian clinicians described the careful process involved in diagnosis in females and their reluctance to make a premature diagnosis but acknowledging the need to make sure bleeding symptoms are managed.
When a woman or girl has been diagnosed, telling others is a step that follows and will be part of her decision-making. This session explored some of the issues.
Kim Shaw from Maurice Blackburn lawyers walked through some of the law associated with disclosure to insurance companies and employers. Interestingly, while women are required to disclose their bleeding disorder to insurance companies if asked, there is no case law in Australia about whether they are required to disclose the results of genetic testing, for example, if it shows they carry the gene. There are protective anti-discrimination laws, but it would take a case of discrimination to test the law.
Personal stories from Sharron and Susie followed, exploring how they or their parents told teachers, partners (Sharron had prepared herself to disclose to her partner, only to find a friend had already told him!), and in their workplace.
The Q & A and panel discussion was an opportunity to look more closely at a range of situations. A main area of focus was the workplace and it was clear that disclosure may be different depending on the size of the organisation. In a large organisation the panel recommended looking at its policies in relation to human resources and discrimination and then choosing who it is appropriate to disclose to. In smaller organisations policies can be less obvious or non-existent; a woman may want to get to know the management and test the waters before deciding whether to disclose; alternatively it may work better to disclose before taking up employment.
The emphasis on women and bleeding disorders at this Conference also raised awareness of its importance for community delegates. It was great to see the support and real interest, and these comments by a male community delegate speak to this:
I attended the Women and Telling others session on Saturday afternoon. I wanted to get a female viewpoint on haemophilia. This was a good session for me to attend as my mother bruises very easily and almost certainly will have haemophilia. I also wanted to see haemophilia from a female point of view. This session really showed the problems that women have with haemophilia and VWD and shows quite strongly that haemophilia is not just a ‘boys’ sickness.