This post comes to you on the day that it has been announced that here in the UK, we have lost our "measles free" status. This is a very worrying time for those of us relying on herd immunity to keep us safe, and so I thought I'd have a quick look at the history of measles. I didn't do anything else this day.
This shouldn't have been a surprise to me, and yet here I was staring at the computer screen and waiting for my eyes to read the words in a different way which made it slightly better.
You could call them heroes of modern medicine, but usually a hero has to choose their action.
It will be the chronically ill and disabled people (among others) who are most at risk of the UK's new status as no longer measles free. People who were unable to have the vaccine, and those who had the vaccine but now have compromised immune systems (sorry I really did try to continue having an immune system). And of course those who have to listen to the "horror" of their disability used as a reason why people either should or shouldn't be vaccinated.
But as it turns out the disabled were some of the people most at risk when the vaccine was being developed in the first place.
Dr John Enders was a bacteriologist and immunologist researcher and teacher at Harvard when he was asked to set up a research lab at Boston Children's Hospital for infectious diseases. After a lot of work on a polio vaccine, he and his team became determined to find a vaccine for measles.
When there was a nearby outbreak at a boys' boarding school in January 1954, he sent a researcher to collect blood samples to isolate the virus, telling each one "young man, you are standing on the frontiers of science." This little speech was not an honour bestowed upon the initial testers of the first vaccine a few years later.
By 1958, the team from the Boston Children's Hospital had a live vaccine ready to test, and so they went to the same source of children to test as researchers from many other teams; institutions for the developmentally disabled.
The official reason given for these particular institutions being chosen was that they were places where children lived in close proximity and therefore there were frequent outbreaks of disease. That's certainly what the researchers have said more recently, but needless to say it was well publicised at the time that this testing had been carried out on the "mentally retarded" and it was not a decision that needed to be defended until more recently.
However, the two schools chosen for this testing; Willowbreak State School just outside New York City and The Walter E. Fernald State School outside Boston, were both involved in scandals regarding questionable medical experiments carried out on the children, as well as abuse and neglect which directly led to the Civil Rights of institutionalized People's Act of 1980 many years later.
Samuel Katz M.D. has been interviewed since saying that the vaccine was successful, some children got mild fevers and rashes but no sign of measles and that parents were happy for their children to participate in this medical research to help them, as they were vulnerable to infectious diseases, and science as a whole.
This does not stack up with what else we know about these experiments and institutions in so many ways. Of course there is the ethical pickle of "selecting institutionalized children at all, children whose life circumstances were by any standard already heavily burdened" (as the Advisory Committee on Human Radiation Experiments said in 1994) but added to that is a lack of informed consent for other experiments.
At Willowbrook, children were deliberately given the hepatitis virus just to see how it spread, justifying it by claiming that most of them would have got it anyway. There is no sign that any consent was ever even glanced around for.
At Fernald School, children were encouraged to join a science club with parties, food and trips, oh, and doses of radioactive isotopes in a research project sponsored by Quaker Oats. It was determined that while parents had given consent, they had not been told the full details of the study and the group of children were awarded a $1.85 million settlement in 1998.
As well as the scepticism of whether these institutions were really chosen so they could help out the poor disabled kiddies and whether the permission given by the parents was in fact informed consent, there is, to put it politely, a difference of opinion about the side effects of the initial vaccination.
Dr Maurice Hilleman, a scientist for the pharmaceutical company Merck responsible for 25 vaccines and 9 out of the 14 routinely recommended vaccines for children in the US, said that the side effects listed by the original researchers actually affected most of the children that were given it, with some suffering from fevers so high they had seizures. He would later tell one of his colleagues "it was toxic as hell".
Hilleman later refined the vaccine significantly, each iteration better than the last until he had the vaccine we still use today, and wrote that during his entire career, he was proudest of "being able to survive while being a bastard." Which I couldn't not include.
Aside from the history, I guess the moral of the story is that this is another timely reminder of how much the disabled and sick have already sacrificed for public health and scientific knowledge. It's one of the things that makes it so hard when our safety is swept aside during a crisis like this.
We suffered to get you that vaccine, and we're going to suffer if you don't use it.
Sources:
- Why It Took So Long To Eliminate Measles- Tara Haelle History.com Feb 2019
- Vaccinated: One Man's Quest to Defeat the World's Deadliest Diseases. Paul Offit 2007
- Advisory Committee on Human Radiation Experiments, reporting to the United States Department of Energy in 1994
- A Forgotten Pioneer of Vaccines- Richard Conniff, New York Times 2013
- Interview footage from The Vaccine Makers project
-First Mention: Measles Vaccine 1960- Nicholas Bakalar, New York Times 2010