Tuesday, 23 May 2017

Candlelight Vigil, Canberra, 21 May 2017




It’s 36 years since the first signs of a devastating new epidemic were noted and reported, but that’s only one way of noting when HIV – or AIDS, as it was then – began. For us here today, it probably began on a whole series of different days. The day when someone you love told you they had been diagnosed. The day when you asked for a test, the day when you recognised a symptom. The day you received your diagnosis. Maybe for some, it could even be that day that you attended your first AIDS funeral.

I remember the day it all became real to me as vividly as yesterday. My best friend from the cradle sitting opposite me in Fitz cafĂ© in Brunswick St in 1993. That sudden lurch, that instant reframing of a cold sore that just wouldn’t heal, that recognition that her weight loss had nothing to do with fitting back into her old jeans. Then learning about T-cells, not that she had any to speak of, and the whole new world of opportunistic infections. HIV ceased then to be an abstract social and political problem. It was deeply personal.

Dr Bridget Haire - AFAO
Gabrielle died on the last day of July 1995, at age 28, and I went on to have a career in HIV.

But this is not the story I am here to tell. One of the things in Australia that we rightly celebrate is the way that our communities were organised well before there was any real evidence that AIDS would happen in Australia. Collectives of gay men met and strategized, with the organisations that were to become AIDS councils forming at the time the very first diagnoses occurred in Australia. Similarly, long before HIV had been identified as the viral agent that caused AIDS, our community media were recommending that gay men use condoms for sex. Faced with this looming threat, the shape and scale of which could not be adequately imagined, our communities were prescient, well informed, and strategic. AIDS councils appeared in every jurisdiction, advocating for condom use and for research, and – most importantly – providing the care that people living with AIDS needed. Our organisations were funded, it was whispered, because governments recognised the amazingly cost effective health services they provided by marshalling armies of volunteers from our communities to keep people out of hospital and semi-independent for as long as possible – and, of course, to have an option to die at home, if they so chose, with 24 hour care.

But these care and support services, and the adoption of condoms in a population that didn’t need contraception, were not the only remarkable social movements that occurred in the early days of AIDS. I think that we sometimes forget the extraordinary activism conducted by people living with AIDS  (now of course we would say people with HIV). But that term ‘people living with AIDS’ was in itself ground breaking.  It symbolised the refusal to accept a diagnosis of HIV or AIDS as a kind of social death that prefigured literal death. ‘Social death’ is a chilling concept from medieval times where people with life threatening illness become objects of pity or fear, socially defined by their presumed imminent death.[1] In medieval societies, this social death was actualised for people with Hansens’ disease (leprosy): the banishment of a person showing symptoms of Hansen’s disease to a ‘leper colony’ was marked with the performance funeral rites and mourning of social death for individuals who were cast out of society from that point.[1]

Even in the grim years of the early 80s, prior to any antiretroviral drugs, people with HIV and their communities did not accept that diagnosis equalled death – in fact one of the great slogans from those years was Act Up’s ‘Silence = Death’, a slogan that placed emphasis on social engagement and speaking out. In 1983 a coalition of people with AIDS produced the Denver principles – a deeply moving manifesto that begins with the statement, We condemn attempts to label us as "victims," a term which implies defeat, and we are only occasionally "patients," a term which implies passivity, helplessness, and dependence upon the care of others. We are "People With AIDS."[2]

The Denver principles went on to make a series of recommendations which included rejection of and activism against discrimination and stigma, the right of all people to healthcare and to the enjoyment of sex and sexuality, responsibilities to not transmit HIV onwards, to be politically active and to die and most importantly to LIVE with dignity.[2]

L to R: Robert Mitchell - NAPWHA, Dr Edwina Wright - the Alfred Hospital and Dr Bridget Haire - AFAO
I wonder whether the extraordinary medical advances made with combination antiretrovirals could have happened without the activism of our communities, collaborating with researchers agitating for change, and sometimes taking the rules of drug development into their own hands in instances where it was felt that promising drugs trials were not equitable enough in the access to experimental therapies that they allowed.

Here today I think we are all familiar with the idea that in 1996 everything changed. That’s when we first saw access to life saving combination antiretrovirals – though taking these drugs back then could be so complex and demanding that just taking your pills each day was practically a full-time job, let along managing side effects. In the 20 odd years since then, however, we have seen antiretroviral therapy evolve into a regimen that is as simple as it is effective.

There is less community wide recognition of 2011 as another watershed year in HIV – another year when everything changed, in terms of prevention. In late 2010, early 2011, we saw the first results not only of PrEP trials, but also evidence of the preventative efficacy of treatment-as-prevention – the now accepted fact that a viral load maintained below the level of detection, prevents onward HIV transmission. While we don’t yet have vaccine, having a form of prevention that positive people can control – their own viral loads – and one that negative people can adopt – PrEP – we have dramatically extended prevention approaches.

The response to the new understanding about the efficacy of treatment-as-prevention in Australia was exemplary – the community HIV sector, including the clinician group ASHM –  successfully changed the approval processes regarding early access to antiretrovirals to ensure that all barriers were removed to early uptake.

Our response to PrEP has been rather less effective. There’s pretty good access in NSW and QLD, promised access in the ACT, reasonable access in Victoria but with capped numbers, recruitment just beginning in SA and WA having announced an implementation trial but not yet recruiting. Some jurisdictions, Tasmania and NT – are so far missing out altogether.

This messy, piecemeal, state by state process is really not good enough for a country that has committed to ending new HIV transmissions by 2020.

The brave new world of HIV prevention is maybe more challenging than the treatment revolution of the 90s. PrEP and treatment –as-prevention has some people worried that gay men are now being ‘allowed to have unsafe sex’, forgetting that new biomedical prevention options offer effective new forms of ‘safe sex’. They will not provide perfect protection – nothing is 100 % certain, and we all know someone who knows someone who got pregnant taking the pill – but they are highly effective. Also, the role of the community sector is not to ‘tell’ anyone what they can and can’t do. Our role is to stimulate the conversations, promote awareness and understanding and to help foster sex cultures where people can negotiate the HIV prevention strategies that suit them.  For some men this will continue to include condoms, for some not, others are likely to makes strategic use of different forms of safe sex depending on relationship status and other life style factors. One size doesn’t fit all, and now there is increased freedom for the men who have hated using condoms, and whose sexual expression has been constrained by them, to talk about this and find other options.  Those for whom condoms are effective, convenient, and sexually acceptable should be supported to continue their use.

Ending HIV together is the challenge that faces us. This is more than just preventing new infections – it means a commitment to ensuring that HIV becomes as stigma free and easy to treat as other chronic diseases. It means staying aware that people who are socially and economically vulnerable may face greater challenges in practicing safe sex, getting HIV and STI tests, and accessing treatment if that is necessary. The health gap between Indigenous and non-indigenous Australians is of particular concern, given increasing rates of HIV in Aboriginal Australians.  Addressing this issue needs to be everyone’s business.

Australia’s disinvestment in HIV in our region is also an issue of great concern. At this time, when we should be building the community and health infrastructures to support HIV treatment and prevention, Australia is withdrawing. But no matter how good our responses to preventing new infections are in this country, we need to pay attention to epidemics on our doorsteps.

Finally, within Australia, we need to be very concerned at the increasing devolution of prevention to individual state jurisdictions, as the result looks like differential access to prevention goods depending on what state or territory you live in – a far cry from an integrated national response to HIV that made Australia a world leader.

We have the tools, we have the knowledge and we have the experience to take on the new challenges of ending HIV. The final question is, does the political will exist? Can we stimulate it? The marshaling of political will is, I think, the final piece of the puzzle.

Tonight we are here to remember, here to grieve, but also here to energise each other. To remember how well we have done over past decades, and to marshal that strength, that community connection, to do more, to get to the end, to put in that effort to ensure that HIV stays on the political agenda until we have actually reached those goals.

We can do it together.

Thank you.

Canberra AIDS Memorial at the National Arboretum
Dr Bridget Haire is the President of AFAO. This is the text of a speech delivered at Canberra’s Candlelight Memorial, an annual event to remember those lost to the HIV epidemic.



References
[1] Wright, Joe. 2013. "Only Your Calamity: The Beginnings of Activism by and for People With AIDS."  American Journal of Public Health 103 (10):1788-1798. doi: 10.2105/ajph.2013.301381.



[2] The Denver Principles http://www.actupny.org/documents/Denver.html

6 comments:

  1. My life is beautiful thanks to you, Mein Helfer. Lord Jesus in my life as a candle light in the darkness. You showed me the meaning of faith with your words. I know that even when I cried all day thinking about how to recover, you were not sleeping, you were dear to me. I contacted the herbal center Dr Itua, who lived in West Africa. A friend of mine here in Hamburg is also from Africa. She told me about African herbs but I was nervous. I am very afraid when it comes to Africa because I heard many terrible things about them because of my Christianity. god for direction, take a bold step and get in touch with him in the email and then move to WhatsApp, he asked me if I can come for treatment or I want a delivery, I told him I wanted to know him I buy ticket in 2 ways to Africa To meet Dr. Itua, I went there and I was speechless from the people I saw there. Patent, sick people. Itua is a god sent to the world, I told my pastor about what I am doing, Pastor Bill Scheer. We have a real battle beautifully with Spirit and Flesh. Adoration that same night. He prayed for me and asked me to lead. I spent 2 weeks and 2 days in Africa at Dr Itua Herbal Home. After the treatment, he asked me to meet his nurse for the HIV test when I did it. It was negative, I asked my friend to take me to another nearby hospital when I arrived, it was negative. I was overwhite with the result, but happy inside of me. We went with Dr. Itua, I thank him but I explain that I do not have enough to show him my appreciation, that he understands my situation, but I promise that he will testify about his good work. Thank God for my dear friend, Emma, ​​I know I could be reading this now, I want to thank you. And many thanks to Dr. Itua Herbal Center. He gave me his calendar that I put on my wall in my house. Dr. Itua can also cure the following diseases ... Cancer, HIV, Herpes, Hepatitis B, Inflammatory Liver, Diabetis, Fribroid, recover your ex. You can contact him by email or whatsapp, @ .. drituaherbalcenter@gmail.com, phone number .. + 2348149277967 .. He is a good doctor, talk to him kindly. I'm sure he will also listen to you.

    ReplyDelete
    Replies
    1. It's indeed a miracle I can't believe am finally free from herpes virus, am grateful to this powerful herbalist called Dr Perfect.
      I'm Chris Anderson from UK I was sick of herpes for 3 years it affected my relationship with my girlfriend when she find out I was having herpes she left me, I missed her so much because I loved her with all my heart and she always makes me happy she was the source of my happiness I wanted her to come back to me, so I took every treatment and drugs but none could cure my sickness I never lose hope because I believe I will surely get cured and be reunited with my girlfriend again so I went online to search for herpes cure and I came across a comment of a man on how this powerful herbalist cured him of herpes, I didn't hesitate I emailed him and explained my problem to him on how this herpes has affected my relationship he replied my mail and he asked for some information which I gave him and he prepared a herbal cure when he finished preparing the cure he sent it to me and instructed me on how to use it and I did it as I was instructed, five days later I couldn't find any sign of herpes that's was how I was free from herpes virus and he also did a love spell that brought back my ex girlfriend, this was the best thing that have ever happened to me am indeed grateful to Dr Perfect for the help he has rendered to me if you need help to cure your diseases or bring back your ex contact him and get your problems solved at solutiontoallproblems1@gmail.com
      You can also add him up on WhatsApp +12562513614

      He can also cure the following diseases
      1. Herpes virus
      2. Chronic venous disease
      3. Gonorrhoea
      4. Hiv/aids
      5. Alzheimers disease
      6. Asepsis
      7. Cancer
      8. Cerebrospinal meingtitis
      9. Infertility problems
      10. Als/ebv
      11. Hpv
      12. Enlargement of any type
      13. Getting back ex lover/divorce
      14. Hepatitis a,b,c
      15. Syphilis
      16. Arthritis
      17. Severe atopic dermatitis
      18. Leukaemia/lupus virus and many more....




      It's indeed a miracle I can't believe am finally free from herpes virus, am grateful to this powerful herbalist called Dr Perfect.
      I'm Chris Anderson from UK I was sick of herpes for 3 years it affected my relationship with my girlfriend when she find out I was having herpes she left me, I missed her so much because I loved her with all my heart and she always makes me happy she was the source of my happiness I wanted her to come back to me, so I took every treatment and drugs but none could cure my sickness I never lose hope because I believe I will surely get cured and be reunited with my girlfriend again so I went online to search for herpes cure and I came across a comment of a man on how this powerful herbalist cured him of herpes, I didn't hesitate I emailed him and explained my problem to him on how this herpes has affected my relationship he replied my mail and he asked for some information which I gave him and he prepared a herbal cure when he finished preparing the cure he sent it to me and instructed me on how to use it and I did it as I was instructed, five days later I couldn't find any sign of herpes that's was how I was free from herpes virus and he also did a love spell that brought back my ex girlfriend, this was the best thing that have ever happened to me am indeed grateful to Dr Perfect for the help he has rendered to me if you need help to cure your diseases or bring back your ex contact him and get your problems solved at solutiontoallproblems1@gmail.com
      You can also add him up on WhatsApp +12562513614

      He can also cure the following diseases
      1. Herpes virus
      2. Chronic venous disease
      3. Gonorrhoea
      4. Hiv/aids
      5. Alzheimers disease
      6. Asepsis
      7. Cancer
      8. Cerebrospinal meingtitis
      9. Infertility problems
      10. Als/ebv
      11. Hpv
      12. Enlargement of any type
      13. Getting back ex lover/divorce
      14. Hepatitis a,b,c
      15. Syphilis
      16. Arthritis
      17. Severe atopic dermatitis
      18. Leukaemia/lupus virus and many more....

      Delete
  2. My life is beautiful thanks to you, Mein Helfer. Lord Jesus in my life as a candle light in the darkness. You showed me the meaning of faith with your words. I know that even when I cried all day thinking about how to recover, you were not sleeping, you were dear to me. I contacted the herbal center Dr Itua, who lived in West Africa. A friend of mine here in Hamburg is also from Africa. She told me about African herbs but I was nervous. I am very afraid when it comes to Africa because I heard many terrible things about them because of my Christianity. god for direction, take a bold step and get in touch with him in the email and then move to WhatsApp, he asked me if I can come for treatment or I want a delivery, I told him I wanted to know him I buy ticket in 2 ways to Africa To meet Dr. Itua, I went there and I was speechless from the people I saw there. Patent, sick people. Itua is a god sent to the world, I told my pastor about what I am doing, Pastor Bill Scheer. We have a real battle beautifully with Spirit and Flesh. Adoration that same night. He prayed for me and asked me to lead. I spent 2 weeks and 2 days in Africa at Dr Itua Herbal Home. After the treatment, he asked me to meet his nurse for the HIV test when I did it. It was negative, I asked my friend to take me to another nearby hospital when I arrived, it was negative. I was overwhite with the result, but happy inside of me. We went with Dr. Itua, I thank him but I explain that I do not have enough to show him my appreciation, that he understands my situation, but I promise that he will testify about his good work. Thank God for my dear friend, Emma, I know I could be reading this now, I want to thank you. And many thanks to Dr. Itua Herbal Center. He gave me his calendar that I put on my wall in my house. Dr. Itua can also cure the following diseases ... Cancer, HIV, Herpes, Hepatitis B, Inflammatory Liver, Diabetis, Fribroid,Parkinson's disease,Inflammatory bowel disease ,Fibromyalgia, recover your ex. You can contact him by email or whatsapp, @ .. drituaherbalcenter@gmail.com, phone number .. + 2348149277967 .. He is a good doctor, talk to him kindly. I'm sure he will also listen to you.

    ReplyDelete
  3. Dr Itua cure my HIV, I have been a ARV Consumption for 10 years. i have been in pains until i came across Dr Itua on blogs site.I emailed him about my details of my HIV and my location i explained every thing to him and he told me that there is nothing to be scared of that he will cured me, he gave me guarantee,He ask me to pay for items fees so when i'm cured I will show gratitude I did and giving testimony of his healing herbs is what I'm going to do for the rest of you out there having HIV and other disease can see the good work of Dr Itua.I received his herbal medicine through EMS Courier service who delivered to my post office within 5 working days.Dr Itua is an honest man and I appreciate him for his good work.My GrandMa called him to appreciate him and rest of my friends did too,Is a joy to me that I'm free of taking Pills and having that fat belle is a nightmare.you will understand what i'm talking about if you have same problem I was having then not now though.I'm free and healthy Big Thanks To Dr Itua Herbal Center.I have his calendar too that he recently sent me,He Cure all kind disease Like,Cancer,Herpes,Hiv,Hepatitis B,Fibroid,Diabetes,Dercum,Copd ,and also Bring back Ex Lover Back..Here his Contact .drituaherbalcenter@gmail.com Or Whats_app Number +2348149277967

    ReplyDelete
  4. It's indeed a miracle I can't believe am finally free from herpes virus, am grateful to this powerful herbalist called Dr Perfect.
    I'm Chris Anderson from UK I was sick of herpes for 3 years it affected my relationship with my girlfriend when she find out I was having herpes she left me, I missed her so much because I loved her with all my heart and she always makes me happy she was the source of my happiness I wanted her to come back to me, so I took every treatment and drugs but none could cure my sickness I never lose hope because I believe I will surely get cured and be reunited with my girlfriend again so I went online to search for herpes cure and I came across a comment of a man on how this powerful herbalist cured him of herpes, I didn't hesitate I emailed him and explained my problem to him on how this herpes has affected my relationship he replied my mail and he asked for some information which I gave him and he prepared a herbal cure when he finished preparing the cure he sent it to me and instructed me on how to use it and I did it as I was instructed, five days later I couldn't find any sign of herpes that's was how I was free from herpes virus and he also did a love spell that brought back my ex girlfriend, this was the best thing that have ever happened to me am indeed grateful to Dr Perfect for the help he has rendered to me if you need help to cure your diseases or bring back your ex contact him and get your problems solved at solutiontoallproblems1@gmail.com
    You can also add him up on WhatsApp +12562513614

    He can also cure the following diseases
    1. Herpes virus
    2. Chronic venous disease
    3. Gonorrhoea
    4. Hiv/aids
    5. Alzheimers disease
    6. Asepsis
    7. Cancer
    8. Cerebrospinal meingtitis
    9. Infertility problems
    10. Als/ebv
    11. Hpv
    12. Enlargement of any type
    13. Getting back ex lover/divorce
    14. Hepatitis a,b,c
    15. Syphilis
    16. Arthritis
    17. Severe atopic dermatitis
    18. Leukaemia/lupus virus and many more....

    ReplyDelete
  5. It's indeed a miracle I can't believe am finally free from herpes virus, am grateful to this powerful herbalist called Dr Perfect.
    I'm Chris Anderson from UK I was sick of herpes for 3 years it affected my relationship with my girlfriend when she find out I was having herpes she left me, I missed her so much because I loved her with all my heart and she always makes me happy she was the source of my happiness I wanted her to come back to me, so I took every treatment and drugs but none could cure my sickness I never lose hope because I believe I will surely get cured and be reunited with my girlfriend again so I went online to search for herpes cure and I came across a comment of a man on how this powerful herbalist cured him of herpes, I didn't hesitate I emailed him and explained my problem to him on how this herpes has affected my relationship he replied my mail and he asked for some information which I gave him and he prepared a herbal cure when he finished preparing the cure he sent it to me and instructed me on how to use it and I did it as I was instructed, five days later I couldn't find any sign of herpes that's was how I was free from herpes virus and he also did a love spell that brought back my ex girlfriend, this was the best thing that have ever happened to me am indeed grateful to Dr Perfect for the help he has rendered to me if you need help to cure your diseases or bring back your ex contact him and get your problems solved at solutiontoallproblems1@gmail.com
    You can also add him up on WhatsApp +12562513614

    He can also cure the following diseases
    1. Herpes virus
    2. Chronic venous disease
    3. Gonorrhoea
    4. Hiv/aids
    5. Alzheimers disease
    6. Asepsis
    7. Cancer
    8. Cerebrospinal meingtitis
    9. Infertility problems
    10. Als/ebv
    11. Hpv
    12. Enlargement of any type
    13. Getting back ex lover/divorce
    14. Hepatitis a,b,c
    15. Syphilis
    16. Arthritis
    17. Severe atopic dermatitis
    18. Leukaemia/lupus virus and many more....

    ReplyDelete