You can follow Alice’s campaign and her adventures : https://www.facebook.com/AliceHIV/
Alice, why this campaign?
It’s impossible to talk to you and not be impressed by how passionately you are working to make for change. Can you tell us a bit about why you decided to embark on this campaign?
It all started with a work initiative that grabbed my attention. As soon as I heard about it I felt this was the opportunity i’d been waiting for – it literally fell into my lap and felt like fate so I jumped straight on board! I created Newham CCGs HIV Campaign after receiving funding to recruit one of our local GPs to be our HIV Clinical Lead. The aim was to support Primary Care to increase HIV testing in the borough. I also championed Newham CCGs charity of the year – ‘Body & Soul ‘ and since November I have helped raise £700 for the cause.
I am passionate about supporting those who are living with and whose lives have been affected by HIV, as it has impacted on my life in a big way and I feel that now is the right time to tell my story. I want to show support for people facing the same battles that affected my own family, but I also want to help other people understand the issues that surround HIV. So I decided to launch my own campaign, alongside my work initiative and both are going from strength to strength.
You say you are determined to give a voice to people whose stories may have been forgotten or never told. Why do you think it is so important to do this?
The history that stems from when HIV/AIDs was first diagnosed to where it is now, spans a relatively short time, yet the impact HIV has had on the world is pretty mind blowing. Millions of people have died, it has devastated countries, communities, individuals and families.
I have come to realise that unlike cancer, which almost everyone can relate to, unless your life has been affected in some way by by HIV/AIDs, then you are pretty unaware of the devastating effect this virus has had. The thing that singles HIV out is the cruel stigma that is associated with it. It is this stigma and the misery it can cause that makes me determined to try and make other people understand and feel differently about HIV.
Unless we talk about HIV/AIDs, how is has and continues to affect individuals, communities and countries, then we remain ignorant and fears and myths grow. When the news that HIV had been first diagnosed came there was a great deal of fear and panic, with that came cruelty and contempt. HIV was often described as a plague, and some people even regarded the virus as God’s punishment on those who became infected. So many died before treatment could be found. People diagnosed with HIV not only had to face this as the probable outcome of their HIV diagnosis, but also the loss of so many friends and loved ones. Many people were also ostracised, judged and shunned by society, family and friends. Many lost their livelihoods and homes. We of course know that regardless of who you are or what you believe HIV has no boundaries, it can potentially infect and affect us all.
Stories need to be told, people need to be provided with knowledge to enable them to feel and think differently about HIV/AIDs. I will spend what energy and time I have in helping with that.
You have already said Mildmay is close to your heart, can you share with us why that is?
After my dad was diagnosed with HIV, the first few years were ok and life was pretty normal, but after a while HIV began to affect his body and he had many bouts of quite terrifying illnesses. On two occasions he suffered brain diseases, my mum could tell when these were coming on as he wouldn’t quite act himself and then he would have a huge fit and the ambulance would be called. He would then spend periods of time in Mildmay Hospital recovering and getting better. The specialist care he received could only have happened at somewhere like Mildmay. The love and care he was given was second-to-none.
I remember the numerous times I visited him at Mildmay Hospital, I always remember him being happy there and he never seemed ill whilst he was in there. It was like it was all ok again when I visited him. I have nice memories of Mildmay and the nurses, doctors and specialist treatment he received whilst in their care. Basically Mildmay saved his life and it meant we had a few more precious years together.
I can’t repay that but I can help Mildmay give the same care to other people like my dad.
Many people think HIV is no longer an issue, why is talking about HIV today still so important?
The medication, research and the organisations that have formed to support people living with HIV have come such a very long way since the beginning of the 1980s. I think most people think that all the work has been done.
It’s amazing what support is now available for people living with HIV, vital support that wasn’t around for my family when my dad was diagnosed. If some of the organisations that I am supporting in my campaign had been around when my dad was alive, I truly believe he would have been with us a few years longer.
Times have changed, today in the UK, people diagnosed with HIV have access to medication that means most can live long and healthy lives and people on effective treatment cannot pass HIV on to others. However this is not the case for all, HIV is often complex, late diagnosis is still a problem and there is still so much stigma surrounding HIV.
When people hear the word HIV most will predominately think “gay man” or “Africa” and will think that somehow HIV will never ever affect their lives. However, In 2018 HIV is affecting every culture, demographic, ethnicity and age. We need to empower people with the knowledge and understanding of what HIV means today. Inform people about the ways in which we can protect ourselves from contracting the virus and how very important testing is to prevent a late diagnosis which can be devastating for health. We need to change people’s hearts, minds and feelings about HIV and raise awareness of the fact that when on effective treatment people can live quite a normal life with the virus nowadays.
There is still so much work to do before people understand what HIV means today.
Do you have a goal in sight for 2018?
From December 2017 to December 2018, my mission and goal is to campaign for HIV awareness, testing and work to help to reduce the stigma that surrounds HIV. I also aim to fundraise for the HIV charities I have chosen to support and my target is a £3,000. I will continue to meet with various people and organisations associated with HIV, conduct interviews with those living with or those who have been affected by HIV and finish the final draft of the book I am writing by 31stDecember 2018. Next year I will commit to another mission and target to continue my campaign around HIV.
Have your plans changed in any way since you started this challenge?
My plans and goals have only increased day-by-day, as new ideas come to mind. My fundraising campaign grows and my ideas to support those living with or affected by HIV strengthen. I have come to realise that this will not be a quick battle, but I know that as time moves on my knowledge, passion and fight only grows stronger.
Tell us what Alice does to relax…does Alice ever relax?
Not really, I am constantly on a mission with something and my HIV campaign has kept me very busy! My mind is a constant whirlwind of ideas. Relaxing doesn’t help me, I don’t think it ever has! I wish there were more hours in the day!
If I’m doing something productive then that’s relaxing to me and when I have time and space to create and make fundraising ideas then that is definitely what I find empties my mind of my troubles.
Do you have one simple message to people reading this blog?
Since I launched my campaign I have spent many moments explaining to people where my passion comes from – and that’s my Dads story. I have never wanted to waste my life feeling like I missed out, that I wasn’t responsible for my own path or that I struggled because of what happened to my family. If there is one thing I’m sure of in my life it’s that I had the best Dad and I consider myself very lucky that he was mine. So I will use the passion and energy that he had for the things that he loved and found pleasure in, as well as the love that he showed to me to make a difference to other people’s lives.
I never thought I’d be where I am today, on a path to helping others feel differently about HIV and supporting those living with or affected by it.
Telling my Dads story has been tough throughout my whole life. Reactions and comments about HIV have not been easy to listen to a times but it has made me tough and determined to help other people understand HIV and its history. It’s one we must never forget and never give up on.
Believe in and be proud of who you are, what you’re made of and where you have come from. Your story may give someone else strength in their own life, that’s a very powerful and wonderful thing to give to another person.
Alice is an inspirational woman with a huge heart and an impressive goal, we look forward to working with her through this year and beyond!