A life lived in pandemics – published in The Independent, 15 June 2021

New epidemics demand humility, curiosity and hope. On 5 June
1981, the US Centre for Disease Control (CDC) published its
first report of pneumocystis carinii pneumonia in five gay men
in Los Angeles, California; on 5 January 2020 the World Health
Organisation (WHO) published its first report of pneumonia of
unknown cause in 44 patents in Wuhan, China.
As we move into the second miserable year of the new
pandemic, we also hit the fifth decade of the one where I did my
growing up. My life continues to be endlessly changed by these
different, and in some ways oddly similar, pandemics. Some of
the responses to Covid build brilliantly on the lessons of the
past, other aspects should. From the beginning I was fascinated
by this rapidly emerging new epidemic, and the similarities of
science, politics and people with what I experienced decades
ago. Then in May 2020 – late in the first wave – I became sick
with Covid-19. As my own infection lingered, so did my focus
on the connections and differences, and the lessons we still
might have time to learn, from global and local responses to

Five years after that first pandemic started, I found myself on
the barricades caught up in the excitement of volunteering for
the Terrence Higgins Trust (THT). An enthusiastic, idealistic
student, I learned so much from extraordinary men (mostly)
whose activism was grounded in the global struggle for gay
rights. A huge amount of energy for change came from people
living with HIV and Aids, like the UK’s (mostly now disbanded)
support groups Frontliners, Positively Women and Blackliners.

People joined them searching for information and solidarity,
then quickly shifted gear to advocacy, confronting neglect and
lack of services. Their enraged and focused energy shaped and
inspired my sense of how change happens. United by a shared
awareness of risk, and horror at the demonisation of the sick and
dying, Aids attracted keenly committed volunteers and brilliant
advocates at all levels of the response. It’s not been the same
with Covid.

Invisible for too long, and often fearful of racist
repercussions, African and Caribbean communities
were also disproportionately affected by that virus

Failing to recover from my Covid symptoms, I searched online
for support from others and, finding virtual groups bringing
together thousands of people, I soon started to share what I’d
learned from the other pandemic of my lifetime. The Aids
rallying cry “Nothing About Us Without Us” struck a chord
with other people living with Long Covid. In August 2020, I
joined some of them to give evidence to the UK’s All Party
Parliamentary Group on Covid and subsequently drafted a long
list of demands that we sent to the Health and Social Care
Committee. The committee quizzed health secretary Matt
Hancock about non-existent services; he rapidly announced
£10m to set up Long Covid clinics. Sounds good – but currently
there are 1 million people with Long Covid in the UK (according
to the ONS). It’s a paltry £10 per person.

Many of us are enraged by the consequences of underfunding:
extreme waiting lists, inadequate care, inept information
campaigns and much besides. Yet unlike Aids, no dynamic
activist force for change has emerged. Why? It doesn’t help that
profound fatigue is the defining symptom of Long Covid. Also,
few of us were connected before our Covid symptoms lingered –
except the hundreds of thousands of health and care workers
(ONS recently discovered that – unsurprisingly – they carry the
highest burden of Long Covid). It’s shocking to watch the
neglect of so many who suffer from long-term symptoms after
getting sick at work – people, especially from black and Asian
communities, infected due to inadequate PPE and often forced
back to work too early or retired against their will, rather than
supported with a phased return. As midwife Sophie puts it: “I
didn’t die from Covid, but I haven’t got better.” The inherent
qualities of carers include putting others’ needs first. With the
power imbalance and fear of taking on employers, occupational
communities behave very differently from recreational ones.

I met Sophie through the Long Covid Support Group, through a
concerted effort to encourage people of African descent to join
meetings of the NHS Long Covid Taskforce and with health
ministers to speak about their lived experiences. All of us who
had fallen into the role of “representing the community” were
white, and some of us worried that as (middle-class) white
women we had the privilege to seek help and speak out, while
other communities took the brunt of death and serious illness.
As early as May 2020, the ONS was publishing careful statistics
on the disproportionate impact of Covid-19 on the UK’s black
and Asian communities. It took months for government policy
and messaging to catch up with the data; I’m not sure the
community groups have caught up yet. The same happened in
the early days of Aids. Invisible for too long, and often fearful of
racist repercussions, African and Caribbean communities were
also disproportionately affected by that virus – with poverty
driving the uneven impact in different ways.

The epidemiology of infectious diseases matters. In 1986, the early, weekly reports of growing numbers of people with HIV alarmed and fascinated me – I tracked them closely, piecing together how the epidemic expanded among women in the UK. Epidemiology is a fascinating detective story – a science now practised from armchairs all over middle England, with people
interrogating Chris Whitty’s nightly slideshows. In his 1987 book And the Band Played On, Randy Shilts (the San Francisco journalist who died of Aids-related complications in 1994, aged 42) describes in rigorous detail the daily endeavours of epidemiologists trying to piece together the trends at the start of the epidemic. In July 1981, four weeks after that first report, scientists at the CDC also found 20 men in New York with the same symptoms, and as he archly comments: “They weren’t all eating at the same restaurant.” Epidemiology is fascinating, and it is also political.

Larry Kramer’s angry essay “1,112 and Counting” changed the
course of the Aids response in the US, documenting the
relentless increase in deaths among gay men. His impassioned
plea to gay men to understand the impact on their communities,
entwined with neglect by the authorities created to protect
them, led to the creation of activist group ACT UP (the Aids
Coalition to Unleash Power – and it did). Opening with the line
“If this article doesn’t scare the shit out of you, we’re in real
trouble”, Kramer’s essay is a masterpiece in using epidemiology
to alarm and demand action (and I wish I had written my own
version in May 2020). It’s a story expertly retold by David
France (with the benefit of three more decades’ hindsight) who
shows how the initial public health and political responses were
slow, fearful and grounded in prejudice. In the Covid era,
alarmed epidemiologists have taken to social media, creating
“Independent Sage” and Twittering loudly with the same intent.

Many political responses to Covid-19 have been slow and inept,
but for different reasons – several of which are currently being
blown open through fierce political and media questioning. The
early history of Covid already provides a clear case study in how
politics and public health are entwined (in too many countries
populism and economics have been prioritised over public
health) just as Aids demonstrates how human rights and public
health cannot be separated. In the UK, politicians with little or
no understanding of science or health promotion offered
contradictory and confusing messages on Covid, frequently
undermining the role of the chief medical officer – a role that
had been so important in the early years of the Aids crisis where
Sir Donald Acheson quickly emerged as a voice of reliable
scientific information and advice. From the outset, Aids was
mediated through a hefty dose of homophobia and stigma
against what we now (politely) call marginalised groups or key
populations: those who were most vulnerable to HIV, including
the vibrant communities of sex workers, drug users and gay men
who already shared so much experience of being hated and
criminalised. Communities had to take this on, as Australian
activist Adam Carr noted as early as 1984: “We are the only
people with the power to stop Aids, and this is our one great
strength, our one ace. The doctors cannot stop it, the scientists
cannot stop it, the government cannot stop it, except by helping
us to stop it. Only gay men themselves can bring this situation
under control, and we have the means to do it. If we publicly
pledge ourselves to this objective, and if we achieve it, we will
succeed not only in saving ourselves, but in saving the whole
community, from the scourge of this dreadful disease. And the
political consequences of such a victory will be as beneficial to
us as the consequences of our failure to act would most certainly
be calamitous.”

In 1998 I moved to Australia to lead the Australian Federation of
Aids Organisations, hoping to learn from the best Aids response
in the world. It’s no coincidence that many countries doing well
in relation to Covid also did well on Aids. Australia and New
Zealand know the importance of coordination, inclusive
decision-making, valuing all communities, and governments
communicating with affected populations in a straightforward,
honest way. By contrast, the (many failings) in the Indian
response include that “until April, the government’s Covid-19
taskforce had not met in months”.

Serious public health challenges demand seriously good
governance and effective political leadership. The shocking
course of the epidemic in countries with populist leaders – think
Bolsonaro, Johnson, Modi, Trump – contrasts dramatically with
the success in countries with considered, thoughtful people at
the helm. It is no coincidence that research on 35 countries
found that those with female leaders “experienced much fewer
Covid-19 deaths per capita and were more effective and rapid at
flattening the epidemic’s curve, with lower peaks in daily
deaths”. New Zealand’s Jacinda Ardern is top of the crop,
keeping Covid deaths well below 1/100,000 deaths; by contrast
the UK’s rate is 190/100,000. Before we despair, there is real
hope for transformation. Where governments get it wrong,
there is still potential for course correction. The US
demonstrated this clearly in the shift from Trump to Biden –
something redolent of the massive changes in South Africa’s
response to Aids when the murderous denialist policies of
Mbeki and Tshabalala-Msimang gave way to the evidence-based
effective scale-up of treatment and services by President
Motlanthe and his health ministers Hogan and Motsoaledi.

And so we stayed at home, avoiding care. Many of us
got very sick, few of us got any treatment.
Thousands died needlessly.

Successful public health responses depend on good
communication, exemplified by Ardern’s reassuring, but firm,
introduction to her country’s lockdown measures – and her
delightful national address giving the Easter Bunny and Tooth
Fairy essential worker status. Of course, it was cute for a young
mother to take children seriously, but her approach goes deeper,
demonstrating a genuine appreciation of what it takes to support
people to respond to unreal demands in the face of
unprecedented challenges. Early Aids campaigns were
successful because gay men spoke to each other in
straightforward language, emphasising shared risks, and urging
each other to take extraordinary measures to tackle
unprecedented challenges. UK Covid campaigns have been
striking by their absence of focus on the dynamics of
transmission, and their hefty emphasis on rules and
punishment. HIV messages and safer sex workshops focused on
eroticising safer sex and encouraging people to do counter-intuitive things, giving detailed descriptions of why certain acts
were and were not safe, and giving people the information and
skills to make smart judgments in unexpected situations.

As with Aids, all households received a “vital update from the
government about” coronavirus. March 2020 was just the
second time letters had been sent to warn every household
about a public health threat. By then at least 10,000 people had
died. In 1986, when health minister Norman Fowler persuaded
Thatcher to send out the “Don’t Die of Ignorance” leaflet, 275
people had been diagnosed with Aids. While far from perfect, at
least it took people through the basics of how HIV was
transmitted and how to avoid infection, with frank information
about “risky sex” and “sharing needles”. By contrast the 2020
“information” is heavy on rules and slogans – with little attempt
to explain how coronavirus is transmitted, and no advice on
what to do if you got sick with it except stay at home.
Accompanying posters screamed “If you go out, you can spread
it, people will die.” But what to do if you did get it? The answer:
“Stay Home.” Prevention is vital with a highly infectious disease,
but – and this was often the same with Aids – messages failed to
consider that their audience included people who were
(becoming) sick or had recovered. And so we stayed at home,
avoiding care. Many of us got very sick, few of us got any
treatment. Thousands died needlessly.

It is remarkable that so much behaviour change happened so fast
with both pandemics. As Covid lingers, the focus on
criminalisation and lack of attention to how the virus is actually
transmitted poses massive challenges. Lopsided messaging can
only fail if individuals (such as students) are left to guess about
risk minimisation measures, and risk fines even if they guess
right. Criminalisation has never worked well in tackling Aids,
and it is equally messy and ineffectual in stopping Covid.
Terrifying people only works for a short time (if at all). As Aids
epidemics matured and knowledge expanded, communities
would adjust their health promotion messages. In the second
decade, as HIV testing and treatment became easier to access,
some gay communities adopted “serosorting”, meaning that (for
example) men who had both tested HIV-negative would stop
using condoms together – and then use them if they had sex
with others who were (or might be) HIV-positive.

Not a perfect strategy, but a fine example of risk minimisation,
rather than elimination – an essential strategy for living longterm with a pandemic. CDC director Walensky recently asked
people to make their own (risk minimisation) assessment about
whether they need to wear masks given the very high vaccine
coverage: “If they are vaccinated and they are not wearing a
mask, they are safe. If they are not vaccinated and they are not
wearing a mask, they are not safe.” As the UK loosens
restrictions, Boris Johnson’s messages start to include vague
reference to “trusting people to make their own decisions”. Not
only is this weirdly patrician, it seems doomed to failure given
that thus far the government has not trusted people with clear
information about how the virus is and is not transmitted. With
complex demanding health messages, countries do best by
bringing people with them creating a shared understanding of
why different behaviour is needed. We learned that in Aids; we
are lagging with Covid.

Happily, there are a couple of areas where the Covid response
stands on the shoulders of the Aids response. The swift,
collaborative development of effective vaccines builds on the
excellent international collaborations set up by Aids researchers
in the 1990s. And there is also real hope that access to Covid
vaccines in poor countries will be achieved because activists are
building on what we didn’t quite achieve in the past. Both
pandemics are scarred by inequity and a hideous global divide
with the poorest countries bearing terrible burdens of illness
without the means to pay for the medical interventions that pull
richer countries out of the depth of the mess. In Aids there was
a massive treatment divide; for Covid it’s all about vaccines.
Over the past year activists for Covid vaccine equity have been
pleading for big, powerful countries to waive the TRIPS (Trade Related aspects of Intellectual Property Rights) agreement – a
structural solution to the economic disparities that drive
pandemics among the poorest people of our world. The energy
has been fierce, my inbox creaking with sign-on letters and
raging Op Eds from advocates on all continents explaining the
complex nuances of how smart international negotiations could
save millions of lives. Few of us expected the official US
government tweet on 5 May, from trade representative
ambassador Katherine Tai, who proclaimed: “These
extraordinary times and circumstances call for extraordinary
measures. The US supports the waiver of IP protections on
Covid-19 vaccines to help end the pandemic and we’ll actively
participate in @WTO negotiations to make that happen.”

It’s a perfect example of what smart – and very persistent –
advocacy can achieve. Over two decades ago, smart Aids
activists – such as indomitable campaigners Ellen t’Hoen and
Jamie Love – figured out that one of the simplest ways to get
drugs into (poor) bodies would be to stop companies boosting
their profits (and with them the costs to poor countries) by
charging for the IP (intellectual property) involved in developing
them. Companies argue that without recouping their IP costs
they will never develop new products; the counter-argument is
that in the face of a global health emergency where medicines
(for Aids) or vaccines (for Covid) are not affordable for most
poor people, the World Trade Organisation (WTO) must force
companies to waive the IP levy that big companies apply to the
costs of new products; TRIPS is the bit of international law that
governs who gets to profit. The US policy shift to advocate for
TRIPS waivers is shaking big pharma to the core as it means that
local companies could access the formulae needed to
manufacture vaccines and drugs quickly and cheaply.

The explosion of mask designs and sales of hand
cream to mitigate the impact of over-sanitising have
made behaviour change desirable

Two decades ago local drug companies in South Africa started to
make ARVs (antiretrovirals) to treat their (now 7.7) millions of
people living with HIV. The pharmaceutical companies who had
developed and licensed these ARVs took then President
Mandela to court claiming that South Africa was breaching
TRIPS legislation with this local manufacture (in essence that
they had stolen the “recipe”). Mandela countered that Big
Pharma was profiteering on the backs of the poor, and that the
country with the largest Aids epidemic in the world should be
allowed to make drugs for its people without paying Big Pharma
for its IP. South Africa won.
Behind the snappy slogans “Pills not profits” lie extremely
complex details of international law, and the power imbalance
that rules international negotiations and the need for technology
transfer as well as waiving legal restrictions. South Africa and
India remain champions of rebalancing in favour of the
countries that need – and can now manufacture – generic (aka
“copycat”) products; but until 5 May the wealthier nations had
continued to line up on the side of the multinational
corporations and their IP protection. Instead of a structural
solution they emphasised the more charitable style model of
Covax – a global collaboration to accelerate the development,
production, and equitable access to Covid-19 vaccines. Covax is
hugely impressive but – like other global health bodies such as
the Global Fund to Fight Aids, TB and Malaria – it will always
be caught by the complex geopolitics of global health.

Hence the brilliance, and shockwaves with the US
announcement. It took me back to 1998, when I had been
elected as the first community co-chair of an International Aids
Conference (IAC). In July, 10,000 scientists from all disciplines,
policy makers and activists (and my one-year old twin sons)
gathered in Geneva under the slogan “Bridging the Gap”. Covid
began in a very connected world, whereas the Aids response
began before we had email, mobile phones and social media to
ping ideas and advocacy messages to other countries in seconds.
The global response to Aids grew organically out of pre-existing
connections, the recreational communities that shared
information and resources (in the 1980s THT’s most popular
information for gay men were posters from the San Francisco
Aids Foundation repurposed with stickers with the local
helpline number). As the epidemic expanded at pace,
connections at all levels became powerful, with the massive
international Aids conferences serving as a vital point of
networking, scientific exchange, policy plotting and activism
long before we had the ease and immediacy of our virtual world.
Haart – Highly Active Antiretroviral Treatments – had been
revealed to the world at the 1996 IAC under the optimistic
tagline “One World, One Hope”. It was painfully obvious that
this breakthrough announcement only delivered hope to one
part of the world. Two years later we had great hopes that we
could use the conference to make change, but The Lancet
questioned whether the event had “the muscle to persuade the
drug industry that its prices are too high”; Richard Horton
concluded: “We think not.” As usual he was, sadly, right.
Despite intense efforts we could not get a single representative
of the pharmaceutical industry to speak publicly at the
conference, despite many opportunities where we debated the
issue repeatedly. They chose instead to meet behind doors with
UN leaders Kofi Annan and Peter Piot. I recall chairing a vibrant
and detailed panel where Jamie Love and others presented an
impassioned call to arms explaining how IP legislation, and
TRIPS waivers in particular, would deliver Haart to poor
countries far more rapidly than any charity scheme. The cries
for it never ceased, but I often feared it was an activist
pipedream. Three months ago, I was contacted by Gareth
Thomas MP. I’d worked for him at DFID back in 2005 when we
scaled up the UK response on Aids: could I remind him of those
complicated arguments about TRIPS? On 20 May, the Labour
shadow cabinet wrote to international trade secretary Liz Truss
proposing a 10-point plan to maximise production and equitable
distribution of Covid-19 vaccines around the world. The same
NGOs, 15 years ago, had buzzed in my former minister’s ear
about access to HIV treatments for poor countries were back
demanding action on the new pandemic.

The Aids-Covid connections can be found at many levels of
culture, society and policy. These range across the eerie
similarities between the anti-condom proponents and the antimaskers, and related opportunities to promote simple messages
(Wear them inside!) – and by contrast the lagging cultural
responses to Covid. Learning to live safely with both of the
viruses is very empowering. In the same way that we eroticised
safer sex and condom manufacturers developed multiple colours
and flavours, the explosion of mask designs and sales of hand
cream to mitigate the impact of over-sanitising have made
behaviour change desirable. Contrast this with all the inaccurate
and unclear information that can make people go a little crazy –
whether the panic about kissing (how many hours did I spend in
the 90s describing the concentration of HIV in saliva?) or the
extreme measures washing food in bleach, then leaving it to
linger for three days outside the backdoor. The massive need to
integrate behavioural and psychosocial research into a multidisciplinary response was something we got right in Aids at the
beginning, but it’s not happening yet in Covid. And there is no
meaningful engagement of people living with Covid in any
response – global or local – unlike Aids where it is a nonnegotiable requirement.

We need to find smart ways to live with the nagging

complexities of an unknown disease course ahead

The need to get treatment activism off the ground and balance
focus on prevention with the urgency of early interventions and
better treatments is also trailing far behind. Of course vaccine
development has been remarkable, and unexpectedly swift –
contrast with HIV where 40 years on vaccines continue to elude
us. Yet we are astonishingly slow with the Covid treatment
progress. I remain shocked that one year on there is none of the
loud clamour for treatments among the now millions of us living
with Long Covid. In the Eighties and Nineties people with Aids
demanded access to experimental drugs to have a chance of
survival; in 2020 one high profile president was pumped full of
experimental anti-Covid drugs. He seemed to recover quite
quickly. What about the rest of us? Could I have been spared 10
miserable months of health challenges and time off work if
experimental drugs had been available? What about all the GPs,
midwives, nurses, anaesthetists etc, trained at huge expense,
desperate to work, but stranded by their occupationally acquired
infections with nothing but online physiotherapy on offer. In the
global collaborations all eyes have (understandably) been on the
vaccine with next to no funding or energy devoted to treatments
– for the millions of us with lingering illnesses, and the millions
more who will become sick. That has to change.

Original article: click here

Covid responses must also learn from the centrality of human
rights in Aids responses. Conversations about vaccine passports,
requiring certain cadres of employees to be vaccinated,
approaches to criminalisation would all do well to learn from the
deep discussions among Aids experts about how to get this
right, how to balance “rights and responsibilities”, how to
motivate for effective behaviour change rather than punish
breaches. The same goes for efforts to tackle stigma, and the
very different rationale for the discrimination many of us have
experienced. We must learn to get the language right – the
WHO demands that diseases are never named after places or

We swiftly stopped calling Aids “Grid” (Gay Related Immune
Deficiency) and we must learn to talk about B 1.617.2 – unless
we want to see Asian hate crimes rise among Indian
communities in the same way that they affected Chinese
communities when leaders foolishly spoke about “the Wuhan
virus” and worse. I was struck in recent days to read the death
notice for an amazing colleague who died suddenly with Covid;
their family chose to reference our friend’s underlying health
condition, not the Covid. Many of us gathered (having taken
lateral flows, and keeping our distance) to farewell our colleague,
adapting a ceremony that we had developed over the past
decade to farewell other friends who had lost their lives to Aids.
As numbers keep on expanding at pace, we need to learn from
the past and find smart ways to handle the multiple loss and
bereavement that communities and countries are experiencing
as we face Covid and its uneven impact. Our Aids communities
have got used to this. Before Haart we had the ever expanding
Quilt to memorialise the constant loss. Over the years we have
adopted rhythms and rituals, gathering friends and creating
ceremonies. Perhaps imperfect in the Aids response, but the
communities most affected are the first generation since world
wars to have faced communal loss on this scale. We have tales to
tell, ideas to share.

On a very personal level, the need for smarter more focused
treatment activism feels especially important. I got heavily
involved in Aids treatment activism in the late 1980s and early
’90s, advocating as an ally for my friends – especially women –
living with HIV. At the time, I remember many people asking
“how will HIV affect people in 20 years’ time?” Something that
was de facto unknowable then, just as the natural history of
Covid, and its lingering sequel, is now. Who knows what 10
years with Long Covid looks like? Currently I am rejoicing at a
massive “vaccine bounce” in my own symptoms. In the absence
of real time action research, and clear, focused demands from
activists with similar experiences, we need to find smart ways to
live with the nagging complexities of an unknown disease
course ahead. With a new disease you don’t know, until you
know. But with this pandemic, we have a lot to learn from what
happened four decades ago. It is still not too late to learn from
that history, and avoid repeating its most wretched aspects.