The Great British AIDS Stitch Up!
I note I am supposed to address you as the “Right Honourable” but I am afraid in this ever increasingly woke society I find it offensive to refer to you as “honourable” given it has been over two months with no response to my letter of 9 July 2023.
I appreciate you are perhaps preoccupied with other matters; matters you feel are more important. However, the image in my head is of either you or your team filled with concern that the mere handling of my letter relating to HIV/AIDS stigma sent by ‘email’ may be a route for you to becoming infected with the HIV/AIDS virus. Sound silly? Well, this kind of stigma and nonsense still exists 36 years on from your 1987 AIDS monolith & Iceberg campaigns. Hence my previous communication.
And it was in my letter of 9 July 2023, that I highlighted that I felt I had cause to start a petition on the UK Government and parliamentary platform. A petition asking for the Government to update the UK public on HIV and U=U [Undetetectable = Untransmittable]. The update is much needed given your AIDS monolith and Iceberg campaigns of 1987, while effective in scaring the living daylights out of the public.
Has to be acknowledged, and is widely accepted, instilled fear into the public, which still exists today when people recall those campaigns. I assume the campaigns were to make the public aware of the “ignorance” around “AIDS”. Yet with no follow up campaign the ignorance around HIV/AIDS has for decades been around and directed towards people living with HIV (PLWHIV). And on the back of this ignorance, like any virus this has mutated into the deliberate ‘weaponisation’ of an individual's HIV status.
What absolutely astonishes me and those who have lived with HIV since the 1980s is that there has never been a follow-up campaign. It has been well over 30 years and many successive governments and not one of you has had the desire to set the record straight on HIV/AIDS stigma as a result of these 1987 campaigns. While many argue that the government acted slowly in regard to the AIDS pandemic, or whether these campaigns were effective or not. I must be clear, PLWHIV are not demanding an apology or accusing the government of any wrongdoing, these debates will always be between us and I have witnessed them to be fairly balanced.
What PLWHIV seek is the government to update the public on a public health matter that, let’s face it, has not gone away. The only difference is there are fewer voices given the severe loss of life as a result of the AIDS pandemic. And I believe we all know how these brave individuals spent their final hours shielded by amazing NHS doctors and nurses. HIV charities & organisations along with volunteers to enable a ‘somewhat’ dignified passing under the dark cloud of HIV/AIDS stigma. Often shunned by their own families, locked inside rooms, and placed in a form of confinement behind bed curtains.
The public declared they shed tears and were ‘heartbroken’ when watching Russell T Davies drama, ‘It’s a Sin’. Yet failed to realise that PLWHIV have access to effective medication to extend our lives, with a “normal life expectancy”. Wracked with guilt that we dare complain that our dentist refuses to treat us, or makes us attend at the end of the day when there are no patients around simply because we have shared, we are living with HIV. That the nurse or GP puts on a second pair of gloves before carrying out an external exam for something minor. Or dashes out of the consultation room to get a second opinion on how to deal with us because we are living with HIV.
Or as in 2021 when I was rushed to hospital for a heart attack [which was confirmed] there was a ‘group meeting’ between nurses at the end of the stretcher that lasted 10 minutes declaring they were either concerned or did not wish to treat me when it became known I was living with HIV, U=U with 100% adherence to my HIV medication. Some may respond in disbelief at the notion people used to think you could ‘catch AIDS’ from a toilet seat. Yet in 2021 my employer handled my water bottle at work like a hot potato before throwing it at me to catch declaring “eww I don’t want AIDS”.
PLWHIV have so many stories like mine, and it is clear there needs to be an update by the government. When you invest in medication for HIV I ask, what use is it giving us a normal life expectancy. When we have to endure HIV/AIDS stigma of the past and this trend to now sadistically weaponise, blackmail, and expose PLWHIV while monopolising on the stigma and fear of the previous decades.
As a society, we are more open about mental health that people endure through the often-mundane aspects of life. What considerations are given when PLWHIV have to not only come terms with an HIV/AIDS diagnosis and then the pending years under the fear and stigma of the past? Given the public have not been informed/updated of the advances in HIV science and medication given the current and successive governments think HIV stigma/weaponisation will merely go away if it's not spoken about.
And it has to be noted that no follow-up to the 1987 HIV/AIDS campaign cannot be as a result of ‘cost’. Given we send millions to India in aid yet they land space crafts on the surface of the moon at considerable expense. You spend taxpayers’ money to the tune of £6 million a day I hear for hotels for those that enter the UK illegally and have never contributed a single penny to the state. I wish to make clear I am not expressing an opinion here, just stating the facts and how no argument could be made to the cost of a follow-up campaign on HIV/AIDS. A cost that can be justified as there is no other pandemic in living memory that carries the same stigma where every PLWHIV is literally carrying the weight of the government's AIDS tombstone on their backs.
So, it is with this, that I have thought long and hard and despite being told by my clinician that I was a “poster boy” and would likely be “first in the queue for an HIV cure”. Given it was 23 days from being infected with HIV to being on medication with HIV having very little time to impact my immune system. I am now going on an HIV medication/care ‘strike’!
As of Tuesday 12 September 2023, I will cease taking my HIV medication consisting of 1 daily tablet until such time the Government has assured me it will strongly consider updating the UK public on HIV and U=U. With a campaign that matches the reach (not cost) of the 1987 campaigns. And/or until such a time the Government responds to the petition which I understand will be when/if it reaches 10,000 signatures. Although I have alluded in my previous letter that a petition should not be needed to have the government finish what it started.
Either way, it appears people living with HIV have been ‘stitched up’ and the government has ‘unfinished business’ on this matter.
Sincerely
I absolutely do not encourage anyone living with HIV on effective treatment to stop their medication. If, for whatever reason you’re having such thoughts please see your clinician immediately. And they will be able to answer any questions or concerns you may have relating to your medication and I would hope they will persuade you to remain on your HIV treatment.
RESPONSE FROM HEALTH AND SOCIAL CARE DEPT
Thank you for your correspondence of 12 September to the Secretary of State for Health and Social Care about HIV. I have been asked to reply.
Unfortunately, we have no record of your original correspondence. Please accept my apologies if that is due to a fault on the part of the department.
I was very sorry to read about your experience of HIV-associated stigma and discrimination, which must have been very hurtful and upsetting for you. HIV-associated stigma is unfortunately still affecting people’s experience of living with HIV, and it prevents people from accessing HIV testing and other prevention interventions. This is why the Government’s HIV Action Plan sets out its plans for addressing HIV-associated stigma and improving the quality of life of people living with HIV.
The HIV Action Plan’s objectives include rapid and adequate access to diagnosis, treatment and support for those living with HIV, including addressing stigma to improve health outcomes and reduce onward transmission of infection. With partners, the Government is looking at improving workforce training in the NHS to improve HIV awareness.
Together with the UK Health Security Agency and academic partners, the Government continues to monitor the levels of stigma and discrimination experienced by people living with HIV within the health and social care system as well as within community settings.
HIV Prevention England (HPE) is the national HIV prevention programme for England. It delivers a nationally co-ordinated programme of HIV prevention work that is designed to work alongside local prevention activities by developing resources for populations most affected by HIV. HPE is funded by the Office for Health Improvement and Disparities, which has appointed the Terrence Higgins Trust, a national charity which campaigns about and provides services related to sexual heath [Sic. Health] and HIV, to deliver the programme from 2021-24.
HPE aims to promote HIV testing to reduce undiagnosed and late HIV diagnoses in communities disproportionately affected by HIV. The programme aims to:
improve knowledge, understanding and uptake of combination HIV prevention interventions among populations most at-risk of HIV;
promote condom use, regular testing, PrEP (pre-exposure prophylaxis), treatment as prevention (TasP, U=U) and other evidence-based HIV prevention interventions;
increase HIV testing to reduce the undiagnosed population and proportion of late diagnoses;
raise awareness of STIs and STI prevention strategies; and
reduce levels of HIV-related stigma within affected communities.
Increasing the number of people living with HIV infection on treatment and with undetectable viral load is not only of clinical benefit in reducing HIV-related conditions and deaths, but essential to reduce ongoing HIV transmission. It is now well established that people who receive treatment and have an undetectable viral load cannot pass on HIV infection to others during sex.
Data from the Positive Voices survey will be available in December 2023 and will include more data to help the Government understand people’s experiences with HIV stigma. The Government recognises that there is still much to do to tackle stigma and findings show that you are not alone in having negative experiences.
With regard to you stopping treatment for HIV, I would encourage you to seek support from appropriate services such as the Terrence Higgins Trust at www.tht.org.uk/our-services/living-well-hiv/support-people-living-hiv.
I hope this reply is helpful.
Yours sincerely,
H Percy
Ministerial Correspondence and Public Enquiries
Department of Health and Social Care
I didn’t feel the response addressed the concerns I raised and ‘almost’ had a copy and paste tone to it. I heard a fair bit of what the government aims and/or is doing to tackle/reduce HIV transmissions. But no response to my concerns as to what the government is ‘not’ doing and/or has deliberately avoided to do. The government has ‘not’ updated the public on the advances of HIV science and medication (U=U) in 36 years since its 1987 AIDS campaigns and where much of HIV stigma/weaponisation comes from (check out the recent Iceland Foods weaponisation of HIV [2023]). After all, if pharma GSK can put out a national television campaign on ‘Shingles’ that appears on almost every advert cycle then why can’t the government do the same for HIV/AIDS.
I know myself and many others living with HIV have only vaguely heard of ‘positive voices’ the response reffered to along with other organisations. But we have never been invited to take part in contributing data on living with HIV and possible stigma. Three years on since my diagnosis nobody has asked me about my experiences of HIV stigma. And the same is said for many others I have spoken to who have lived with HIV for years if not decades. We are aware these little groups and orgnaisations are often fronted by people not living with HIV. Strive for an OBE or some form of recognition in return. Or are the same tired faces living with HIV who have formed cliques and groups and often only represent one single ethnicity [“community”] meaning responses are only geared for them and not ‘all’.
I therefore wonder, are these “reports” accurate nor reflective of the entire HIV population? And why should the government rely on ‘reports’, ‘surveys’ and statistics? HIV and HIV stigma should not be merely labelled a number or a percentage. Nor should the government need such stats/percentages to tackle HIV stigma. When the government 36 years on should strive to finish what it started in 1987 and update the public with a campaign that informs the public that the HIV/AIDS stigma of old is no longer valid.
WILLIAM HAMPSON
13/10/2023
