World AIDS Day 2020: Remembering, Commemorating, Learning.
Mark Platt, regulatory policy manager, shares their blog post for World AIDS Day.
World AIDS Day, or ‘WAD’ for short has over the years since its launch been somewhat of a shape shifting affair. When it first launched as an initiate of the World Health Organisation, it gave a focus to the unheard cries and screams from both those infected and affected by the disease, HIV, (Human Immunodeficiency Virus) that we now know is responsible for AIDS (Acquired Immune Deficiency Syndrome). At an instant it created a day on which to globally highlight their demands that their and their communities’ suffering be recognised, and for resources to be given to find a cure for what was then a deadly disease.
Over time the message of WAD has mellowed, as we have discovered more about HIV disease, how it works, and how we can treat and prevent it. WAD has oscillated between being a day of demands to being a day for commemorating. On occasion it has even been a day for celebration, on those occasions when real victories have been achieved in the world’s battle against the virus. It should be noted that there have also been some misfires, and I once attended a fundraiser where a misguided Z-leb wished us all a ‘Happy World AIDS Day’, needless to say lots of jaws were rapidly dropped.
But while HIV has been tamed, it is still out there, and the need for WAD is as strong as it ever was.
HIV as an LTC
Today, HIV is for the most part a manageable disease, a long-term health condition, or ‘LTC’. Instead of dying from it, or rather from it the complications that arise when it progresses to AIDS, many people now live with the virus in their bodies, held in check by drugs that, when first discovered, really did bring people back from the dead. While there are still people around the world acquiring and dying from HIV, it is no longer because we don’t have treatments, but because they are unaware of being HIV positive, or are unable to access the medications they need.
It is worth noting that access to treatments is not a just problem for developing countries or those without universal healthcare systems. Even in the UK, with our excellent record of HIV prevention and treatment, there are still too many cases of people being diagnosed late, which makes them more likely to develop AIDS. Many of these diagnoses are black African men and women (primarily from sub-Saharan Africa), a fact that highlights the challenges facing the communities that comprise this group, including structural racism in the NHS, HIV stigma within the communities themselves, and the impact of immigration policies on individual’s access to health services. It also demonstrates clearly that HIV is both a challenge, and an amplifier of others, often societal ones.
For those people who do find out their HIV+ status early after being infected, the treatment options are wide, and the outcomes are generally good. We’ve moved on from drugs that worked but had many side-effects to ones that have little to no impact on most people’s everyday life. There are still some differences in experience, and as most drugs are tested on healthy young men, prescribing effectively for women and children (a thankfully decreasing group in the UK) can be more hit and miss for them than for men.
Using treatment as prevention
The discovery and development of drugs to treat HIV has also led to new ways to prevent HIV transmission. For those people living with HIV, being on an effective regimen means that they have so little active HIV in their bodies that they are unable to pass it on to sexual partners (the main route of transmission).
This has been captured in an international campaign slogan, ‘U=U’ or ‘Undetectable = Untransmittable’. Although now widely accepted its beginnings weren’t smooth. Some HIV+ activists saw it as placing too much responsibility for preventing HIV transmission on the shoulders of those who know their status, and in some case making people unable to take or tolerate HIV drugs feel guilty about not starting treatment. It also flew in the face of two decades of messaging, during which the focus of HIV prevention campaigns had been to encourage everyone to practise safer sex, and to use condoms.
Much debate ensued, but following improvements in HIV drug regimens which made them easier to take and tolerate, activist on both sides of the arguments recognised the importance to the vast majority of people living with HIV of being able to live lives free of the worry of onward transmission, and in some countries of being prosecuted simply for being sexually active.
‘U=U’ is now a key HIV prevention message around the globe, describing as it does a demonstrable effect. It has also been used by many HIV positive campaigners to tackle the challenge of ‘HIV stigma’. HIV stigma has books dedicated to it, but simply put it is the discrimination that HIV positive people can face from their peers if they are open about their status. It can lead to people not seeking treatment, and in some cases to them spiralling into depression and self-destructive behaviours. It remains a major concern for many HIV campaigners and has appeared in a number of WAD campaigns.
We are now PRePared
HIV drugs have also provided an unexpected option for preventing HIV transmission. In the early days’ protocols were developed to enable rapid treatment to be given to people who had been exposed to HIV (initially through needle-stick injuries, and then through sexual exposure, known as ‘PEP’, or Post Exposure Prophylaxis), usually within twenty-four hours of them being exposed. Miraculously the drugs were able to prevent the HIV virus from replicating sufficiently enough to overwhelm the body and so enabled an individual’s own immune system to clear it from their body.
A quick consideration of that mechanism lead researchers to wondering if the drugs could prevent HIV from replicating once inside someone’s body, might they prevent it from being able to replicate in someone’s body at all? And it turns out, after a number of clinical and community trials, that it does. Or rather one HIV drug does (called Truvada), and so ‘Pre- Exposure Prophylaxis’, or ‘PrEP’ to its friends was born.
And it now has many friends, indeed PrEP has been a game changer. Given on prescription to men (and more lately women) who are sexually active, it helps them to prevent accidental exposure to the disease. That’s not to say getting there was easy, indeed a whole campaign was mounted to demand NHS access — ‘I Want PrEP’. But its success means that today HIV negative and HIV positive people, after many years of pursuing different strands of HIV activism, have combined efforts to beat the disease, united by the same treatment.
Of course, in a biological sense they remain separated by the disease, taking the pill being a choice for one, a daily need for the other. And for those living with HIV, the future is still being mapped. While the drugs keep HIV in abeyance in people living with HIV, their long-term effects are still unknown, indeed it could be argued that the world has been running one large stage four clinical trial of HIV drugs since their arrival in the 1990’s.
Work continues to reduce the impact of the drugs on people’s everyday lives (early drugs needed constant refrigeration, some regimes needed three pills a day, and some drugs could only be taken with certain foods) with trial now underway on regimes that can be injected and last for a week, a month, or even longer. And of course, while the HIV may be stable and undetectable, people with living HIV continue to age.
Ageing with HIV is still a new area for health research. But we do know that for people doing well on HIV medications, the likelihood of developing AIDS related diseases is very low. Indeed, the chances of living to an age similar to that of non-HIV positive people are now quite high, all things being equal. However, HIV’s impact on people’s immune systems remains even after treatment. Consequently, some HIV positive people develop age related diseases, such as cardio-vascular disease, kidney or liver failure, osteoporosis, or memory problems. Some women living with HIV may also experience stronger menopausal symptoms. As with HIV- people, all of these things are specific to the individual, and as with the general population, making life-style changes such as stopping smoking, improving nutritional intake, and keeping physical active can prevent or reduce their occurrence.
Regulating for the Positive
And that brings us to the role that the CQC can play in this now fourth decade of the AIDS-HIV pandemic.
We regulate the services that help prevent HIV’s spread. Our activities can help ensure they are working well and effectively, and that those using their services can be assured of the robustness, in what they do and how they do it. And while being HIV+ still carries stigma for many people, of the security of their information services.
We also regulate the services that provide treatment and care for people living with HIV, and so have a role in ensuring that they are able to access HIV and non-HIV care that is of good quality and able to fully meet their needs. That includes social care too. A small but sizeable number of HIV+ people use social care services, and as the population of older people living with HIV increases many more of them will need the care and support that adult social care provides.
And lurking behind clinical and social care needs are mental health needs. Many people living with a long-term health condition find it a hefty burden, perhaps not all the time, and not permanently, but one that can rear up unexpectedly. Being HIV+ is no different, but can also carry additional challenges, from the discrimination and stigma of the outside world to the internalised stigma and shame that some people carry with them about their status. We have a role in ensuring these services are accessible to HIV+ people, and especially those from communities most heavily impacted by the disease such as black African men and women, and gay men.
Back to the Future
This year’s WAD is a poignant moment. As the world deals a new virus, those living with an older but less transmittable virus have much to worry about, but also much to contribute.
Covid19 has been very hard on health services across the globe. It has taken people and resources away from existing services, including vitally HIV prevention work. On a global scale HIV rates have stalled, with new surges in a number of troubled regions and countries, and Covid19’s effects on poorer communities could exacerbate things further, possibly reversing hard won public health successes.
Covid19 has also returned a global spotlight to issues that the AIDS pandemic highlighted thirty years ago. It has reminded us of the impact that poverty has on disease progression, of the additional challenges that diseases present to women and girls in the developing world, and how disease can further disenfranchise marginalised groups across all societies, including LGBT people and sex workers.
Positively Covid19 has also seen a return of community-led responses. Across the world community groups have stepped up to deliver testing, treatment and care; many based upon existing networks created from the AIDS pandemic response. In the UK the pandemic saw the emergence of mutual support groups, with volunteers coming forward to support vulnerable people and provide information and aid to support government and NHS responses, an echo of HIV/AID supports groups like ‘Frontliners’ and ‘Body Positive’ in the 80’s and 90’s.
And as we are now beginning to discover, the long-term effects of being seriously affected by Covid19 may leave a large number of our fellow citizens having to learn a new normal, one in which they may need additional health and care support, and which may be very different to the life they had envisioned lay ahead at the start of this year. People living with HIV have a lot to share on that front, and their history of creating support groups and agitating for dedicated treatments is a road map for the survivors of this new illness, which has been described by some clinicians as being like a mix of influenza and HIV.
We must also be on the watch for unexpected impacts from the pandemic. While thankfully the risk of catching Covid19 is the same for those with stable HIV and taking ART (Antiretroviral Therapy), as the general population, for those who don’t know their status or who are unable to access ART the chances of catching it are much greater. This is a fact baldly illustrated by the way in which tuberculosis spread unchecked among people living with untreated HIV in Africa and Asia in the 1990’s.
Because we are where we are, we cannot be who we were…
I love writing in the third person. It allows a writer to distance themselves from their words and bring a sense of separation from the tale being told. But of course, it is an artifice. And so while I write ‘HIV+’, ‘HIV Positive People’ and ‘People Living with HIV’ (sometimes written as PLWHIV) what I’m really writing is ‘ME’.
I was diagnosed in 2016, after spending a decade working or volunteering for HIV prevention, trying to stop guys like me becoming HIV positive. That’s why I know about the impact of stigma, as well as the bizarre relief many people experience when they become positive, after spending so much energy trying not to.
I’ve been an HIV prevention activist, an HIV treatment activist, and an HIV prevention trainer. I’ve taken part in HIV treatment trials, and trained to be an AIDS counsellor, in the days when a diagnosis was tantamount to receiving a ‘memento mori’. And through all of that I’ve been a gay man trying to get on with being alive while living through a plague.
World AIDS Day is a strange day for me. It reminds me of friends I’ve lost. It reminds me of huge events that my community (gay and PLWHIV) put on to show solidarity and support, and to raise funds for the community groups that sprang up in the absence of government recognition and funding. And it’s my civil partnership anniversary.
So, here’s my considered take:
- It’s a day to commemorate. We lost lots of people unnecessarily, and well before their time.
- It’s a day to celebrate. We have developed amazing drugs to treat and now prevent HIV disease, and in remarkably short amount of time.
- It’s a day to think about the future. Because our experience of tackling HIV is that with concerted efforts diseases like HIV, and now Covid19, can be beaten. But it takes energy, money, and hard work.
HIV disease swept slowly but inexorably around the world, showing us where our focus was missing, our energies lacking, our compassion missing. Some of the efforts that helped tackle it have provided vital information for our response to the Covid19 pandemic. But there is still learning to be had. As we contemplate WAD this year, individually, and organisationally, I think our challenge is to help our health and care services learn quickly and effectively from the lessons of our HIV/AIDS past.
PS. You may have noticed my phraseology is rather fluid throughout this piece. In an effort to move escape from being victims of this disease, those of us with HIV have created a myriad of terms to describe ourselves, from HIV+ to People Living with HIV, to PLWHIV, and People Living Positively. As with most labels, everyone has their preference, including none. If you’re unsure what term to use, remember that before anything else we’re people.
Links and more reading
- Terrence Higgins Trust/THT, the UK’s biggest sexual health charity, named after one of the first people to die from HIV — https://www.tht.org.uk/
- National AIDS Trust/NAT, policy and advocacy organisation for HIV rights — https://www.nat.org.uk/
- I Want PrEP, the original campaign for PrEP in the UK — https://prepster.info/
- UK CAB — HIV treatment activists’ network — http://www.ukcab.net/
- Positively UK — Peer support organisation for HIV+ people — https://positivelyuk.org/
- The BHIVA Standards of Care for People Living with HIV — https://standards.bhiva.org/home