I don’t often write about healthcare, despite spending a long time working for the NHS, and even longer drinking cocktails with Doctors. I even had the office next to the Chief Medical Officer for a while. His office was warmer and had sofas, but his cocktail skills were mediocre.
One of the most exciting stories in the press this year has been the reduction in new diagnoses of HIV in the UK, which many are attributing to the availability of PrEP – Pre-Exposure Prophalaxysis drugs.
The number of new HIV diagnoses has actually been declining for a decade, from 7892 new cases in 2005 to 6095 in 2015. The US has seen a similar decline, albeit from a higher peak, falling to 39,513 cases in 2015. Heterosexual sex is slightly more common as a means of transmission than homosexual sex between men in the UK.
The cautious celebrations about the improvements in the epidemiology of AIDS are in stark contrast to 2 recent papers from Angus Deaton and Anne Case, which compared the excess mortality rates among non-Hispanic White Americans to the AIDs epidemic. This is from their 2015 paper:
“If the white mortality rate for ages 45−54 had held at their 1998 value, 96,000 deaths would have been avoided from 1999–2013, 7,000 in 2013 alone. If it had continued to decline at its previous (1979‒1998) rate, half a million deaths would have been avoided in the period 1999‒2013, comparable to lives lost in the US AIDS epidemic through mid-2015.”
For those who haven’t been reading the works of Angus Deaton it’s important to point out that he isn’t the disgraced host of Have I Got News for You. He is the Scottish-American Professor of Economics at Princeton who won the 2015 Nobel Prize for Economics. Anne Case is an expert in Public Health.
Their basic thesis is that non-Hispanic White Americans aren’t experiencing the same improvements in mortality and morbidity as other parts of the US population, due to high levels of drug overdoses, suicides, and liver disease. While the life expectancy of non-Hispanic White Americans with College Degrees is increasing, for non-Hispanic White Americans without College degrees life expectancy is actually falling.
I am a massive fan of Deaton and Case’s work, which combines economics and public health in a very clever way to shed light on complex Public Policy problems. It is the comparison with AIDS which was the most striking.
In fact my initial reaction was to mistrust the comparison completely
The best way to explore the impact of AIDs in the USA is by looking New York City. UK numbers for comparison – the 1985 number is the total of pre-1985 deaths.
The UK population grew from 57m to 65m over the period in question. New York city grew from 7m to 8m. If the numbers for NYC look shocking then you are reading them right.
The best known history of HIV in the USA is “And the Band Played On”, by Randy Shilts. Shilts, and many similar works of the period, detail the awful response of the NYC authorities and the US Government. Mayor Koch, and Ronald Reagan’s Republican administration, dragged their feet in dealing with the crisis due to homophobia, preferring to moralise and blame the victims rather than act. Money to deal with the crisis was slow to be committed, and access to treatment was delayed. This was a significant factor in the spread of the disease.
The awfulness of the response from the authorities meant that the gay community viewed early reports and Public Health measures with corresponding distrust, which in turn helped the spread of the disease. All of this took place in a media environment filled with grossly distorted and bigoted descriptions of “The Gay Plague”.
Mayor Koch and Ronald Reagan provide a perfect model of how not to respond to a major Public Health issue.
The response of the NHS and UK public health to AIDs may not have been perfect, but is was notably better than the US. At the time I remember mocking the “Don’t Die of Ignorance” publicity campaign, without grasping how significant it was. When I worked at DH I realised how hard Norman Fowler had to fight to get any kind of recognition of the problem. Norman is an unlikely Public Health hero, but his work deserves wider recognition, and he continues to speak out against the prejudice that still hampers the fight against AIDs elsewhere in the world.
Belatedly the US authorities responded under pressure from well organised public campaigns. These campaigns were not just political, but artistic, trying to change public perceptions as much as challenge politicians in the face of a media environment which was overwhelmingly hostile.
One of these artist activists was David Wojnarowicz, one of the first people to address the AIDs epidemic across art and politics.
This is from his early work Rimbaud in New York.
And this is probably his most famous piece. Silence = Death
Wojnarowicz died of AIDS in 1992 and his ashes were scattered on the White House lawn as part of a protest against the US Government.
Over time the artistic engagement developed through books and plays like The Normal Heart, Angels in America, and Philadelphia. Changes in attitudes towards the Gay Community led to changes of attitudes within the Gay community particularly towards safe sex.
The movement by AIDS activists to gain funding for AIDS research, became a model for future lobbying for health research funding. From actions of avant garde artists to corporate lobbyists.
By 2016 about 675,000 people had died of HIV/AIDS in the USA, over 100,000 in NYC alone. This compares to over 20,000 in the UK. Looking back from the distance of 3 decades we would all like to assume that we wouldn’t make the same mistakes again.
The Deaton and Case paper estimates that there are 500,000 fewer non-Hispanic White Americans than there would be if life expectancy for that group had improved at the same rate as the rest of the American population. The drivers behind this decline are “deaths of despair” suicide, drugs overdoses (particularly prescription opiates) and alcoholic liver disease. The epidemiology of these deaths follows a pattern of relatively falling incomes, even though non-Hispanic White Americans still earn more than other groups.
In essence non-Hispanic White Americans without College degrees have been making bad lifestyle choices for a very long time. Because they were economically advantaged they had better mortality and morbidity – wealth is a very significant factor in determining health status. As these economic advantages have been reduced (but not eliminated) the lifestyle choices have got worse, and the extent to which they are impacting on this population have been revealed. Sorry if that sounds like I am stereotyping, however we are dealing with large populations and lots of data, and it is hard to make that relate to people’s lives without making some rather sweeping statements.
Despite the large numbers I am still not convinced that the analogy with the AIDs epidemic is right, and not just because of the difference in the numbers of deaths. The impact of AIDs was particularly profound among specific groups where it had a devastating effect. The excess mortality and morbidity Deaton and Case found impacts on more people, but it is spread out across a larger population. We are able to put names and stories to the 675,000 while the 500,000 are largely numbers in actuarial tables.
There was however one aspect of the comparison which struck me when I was looking at the D&C paper compared to the AIDs epidemic.
The political response has been just as rubbish.
Where you have communities with lots of synthetic opium, mass prescriptions for mood altering drugs, and loads of guns you will have a high mortality rate. To expect otherwise is bonkers. On the right of American politics measures aimed at reducing access to synthetic opium, mood altering drugs and guns is politically impossible, regardless of the impact on mortality. On the left of American politics their focus is on the constituencies who vote for them – which means that non-Hispanic White Americans without College degrees aren’t a priority.
But there is something more than just the usual crap US politics at work here. There is a real prejudice towards non-Hispanic White Americans without College degrees. Red necks. Mesh backs. Hillbillies. We are still blaming the victims for their own morbidity and mortality. Too fat. Too stupid.
One of the key lessons of the response to the AIDs epidemic is that if you deal with a population with prejudice and then demand that they change their behaviour don’t be surprised if that behavioural change is resisted. We are making this exact same mistake again.
In writing this I noticed one huge difference between the 2 epidemics – the artistic response. While artists were central to shifting attitudes by articulating the experience of living, and dying, with HIV and AIDs there hasn’t been a similar articulation of the problems of non-Hispanic White Americans without College degrees. They remain largely voiceless, unable to tell their side of the story, unable to challenge their portrayal in the media.
Once upon a time Bruce Springsteen would have articulated their experiences, but he is on the other side of the political rift in US society, and besides he hasn’t made a decent album in a very long time.
The person who is articulating the anger and frustration of this population is former reality TV show star and one man performance art show Donald Trump. He is the response. He is just doing it incredibly badly.
This is Klaus Noms, new wave musician, Counter Tenor and one time David Bowie backing singer. He is sometimes described as the first famous people to die of AIDs. His death was followed by Rock Hudson, Arthur Ashe and Freddie Mercury.
There is no reason for Klaus to be in this story at all, other than I was thinking of him when I was writing this, and I wanted an excuse to share this piece of early 80s NY gothic funk.
I would like to give a massive thanks to Rebecca T. Filipowicz, from the Department of Epidemiology at Emory University for helping me track down some of the data.