
The secret in my blood - DanBC
https://www.bbc.co.uk/news/resources/idt-sh/the_secret_in_my_blood
======
zvrba
… and no scientists tried to find out why he is seemingly resistant to the
virus?? That is the _real_ secret in his blood.

~~~
dm319
I'm not sure he necessarily is resistant to the virus. It has a long and
variable incubation period, and he may have been lucky enough that this
incubation period reached the point at which HAART treatment was widely
available.

~~~
Aloha
In the article it says:

"Matt looks at where he is today with amazement. His hepatitis C has gone and
his viral loads of HIV are still undetectable – he’s never had to take anti-
retrovirals. Of about 1,250 haemophiliacs infected with both hepatitis C and
HIV due to the scandal, according to the campaign group Tainted Blood, fewer
than 250 are still alive. “It really is, in terms of health outcomes, like
winning the lottery,” he says."

~~~
dm319
Ah thanks, missed that. Makes you wonder whether the Hep C treatment (probably
with interferon) helped to keep the HIV under control too.

------
dm319
This is a lovely story, and I enjoyed reading it.

I'm not sure the infection of haemophiliacs from blood products should be
compared to Grenfell. Unlike aluminium cladding on a skyscraper, patients took
factor concentrate on specific medical advice to treat bleeds that would
otherwise not have stopped.

These factor concentrates required hundreds of blood transfusions to make just
a small amount (they were also highly expensive, and still are today, shots
can easily cost several thousands of pounds each), and they were given to
treat bleeds, which were life-threatening or limb-threatening. In younger
children and severe haemophiliacs they had to be given factor regularly to
prevent bleeds.

The enquiry will need to look at how the pharmaceutical/product companies and
health organisations dealt with incoming information, and whether they had a
viable alternative at the time. There is suggestion that the UK producer of
factor concentrate (BPL) was highly underfunded at the time, and unable to
produce the required amount of factor concentrate to supply the country.

There is a UK public enquiry ongoing to assess whether someone or some
organisation should hold responsibility for it - and I agree it is overdue.

~~~
jacquesm
It is not about quantity, it is about process. If they had not mingled the
blood of thousands of individuals the damage would have been far, far less.

Of course more - smaller - batches would have been more costly.

~~~
dm319
It's a chemical fractionation process [1] on thousands of litres of blood
plasma, and that's how it is still done today for those products which aren't
produced by recombinant DNA. But these days there are repeated health screens
and viral testing on both the donors and batches, as well as solvent-
treating/ultra-filtering the products.

Maybe it is possible to process in smaller batches, but I suspect that is down
the the facility producing it, and the issue was the that UK weren't able to
increase their in-house production at the time.

[1]
[http://www.penroseinquiry.org.uk/finalreport/text/354876_cha...](http://www.penroseinquiry.org.uk/finalreport/text/354876_chapter_19.html)

------
dsfyu404ed
> Despite a supporting letter from Matt’s HIV consultant pointing out that he
> had contracted HIV and hepatitis C through contaminated blood products
> supplied by the NHS, they were told these were not “exceptional
> circumstances”.

No matter how much I see, hear or read about government bureaucracies treating
people badly because doing otherwise would risk having to own up to their
mistakes it still doesn't disgust me any less. It's one thing for a
corporation (which is supposed to be profit driven) to treat people badly and
refuse to acknowledge it or compensate those who were harmed. It's inexcusable
for a government entity (which is supposed to be serving the people in some
manner) to behave that way.

~~~
jtms
Can you not sue the government in the UK? I am struggling to understand why
this was not a massive class action lawsuit. They severely impacted these
people's lives and deserve compensation.

~~~
foldr
[https://www.theguardian.com/society/2017/sep/26/contaminated...](https://www.theguardian.com/society/2017/sep/26/contaminated-
blood-scandal-victims-win-ruling-to-launch-high-court-action)

------
codeafin
Always insightful to enter the minds of people who are told they're "meant to
die". The mental fortitude of this man is amazing.

Great short read - would love any recommendations of other short stories about
similar situations.

~~~
DanBC
Here's the journalist's twitter account.
[https://twitter.com/mrjonkelly](https://twitter.com/mrjonkelly)

Here's another article he wrote: [https://www.bbc.co.uk/news/resources/idt-
sh/tainted_love](https://www.bbc.co.uk/news/resources/idt-sh/tainted_love)

IRIN News may have similar items. Here's one about refugees which is close.
[http://www.irinnews.org/special-
report/2018/07/19/destinatio...](http://www.irinnews.org/special-
report/2018/07/19/destination-europe-misery-and-misunderstandings-part-1)

------
jacquesm
> In the media, the disease was largely associated with groups such as drug
> users and gay men, who were routinely stigmatised at the time.

This is still very much the case today, depending on where you live it might
even be worse today than it was in the 80s.

~~~
refurb
But that "stigma" is not inaccurate is it? Most of the people _in the US_ with
AIDS are gay men and drug users. Sure other people get AIDS, but the rate is
much lower.

Edit: clarified I was talking about US cases

~~~
jacquesm
> Most of the people with AIDS are gay men and drug users.

Did you just step out of a time machine or something?

The vast majority of AIDS victims in the world are not gay and never used
drugs.

Have some stats:

[https://www.avert.org/global-hiv-and-aids-
statistics](https://www.avert.org/global-hiv-and-aids-statistics)

~~~
wycs
If you randomly select an HIV positive person from a Western country and know
no other facts about them, it is correct to update your belief towards
thinking they are either homosexual or a user of IV drugs. If their gender is
revealed male this is especially true.

Obviously you cannot update this strongly if you are selecting from the global
population but you would still update in that direction. Making these priors
explicit is extremely taboo.

~~~
jacquesm
You are dangerously wrong. No, it is not true that > 50% of the HIV positive
people in Western countries are either gay or use drugs intravenously.

It is that sort of stupid thinking that contributes to HIV spreading the way
it does, after all: you are not a drug user and you are not gay, and neither
is your partner, so what could possibly happen.

~~~
pwned1
[https://www.cdc.gov/hiv/statistics/overview/ataglance.html](https://www.cdc.gov/hiv/statistics/overview/ataglance.html)

[https://www.cdc.gov/hiv/group/msm/index.html](https://www.cdc.gov/hiv/group/msm/index.html)

Canada -> 53% of new HIV infections are MSM [http://www.catie.ca/en/fact-
sheets/epidemiology/epidemiology...](http://www.catie.ca/en/fact-
sheets/epidemiology/epidemiology-hiv-canada)

Australia - > 68% of new HIV infections are MSM
[http://www.hivmediaguide.org.au/hiv-in-australia/hiv-
statist...](http://www.hivmediaguide.org.au/hiv-in-australia/hiv-statistics-
australia/)

UK -> 54% of new HIV infections are MSM [http://www.catie.ca/en/fact-
sheets/epidemiology/epidemiology...](http://www.catie.ca/en/fact-
sheets/epidemiology/epidemiology-hiv-canada)

~~~
jacquesm
It appears my facts on gay HIV are off but on drug users they are on (for the
west).

Globally the situation is _much_ different and about the same number of men as
women have HIV and drugs do not appear to be a big factor in to the equation.

It is interesting how the data has changed over the years, for a long time gay
men were not the largest group but maybe with the increased effectiveness of
anti-virals combined with decreased mortality the balance has shifted
substantially once again.

In the beginning of the AIDS epidemic it was basically a disease afflicting
predominantly gay people and only rarely heterosexuals. The two groups being
somewhat socially isolated was an important factor in this. Then the balance
shifted as more and more heterosexual people got infected and was made worse
by people thinking that HIV would pass them by because they were not gay.

So now we have come full circle.

Still, 32% (at best) are pretty lousy odds so better be very careful.

~~~
refurb
_Still, 32% (at best) are pretty lousy odds so better be very careful._

That's not how statistics work.

MSM and IV drug users are a small percent of the overall population. If you
looked at the rate of HIV cases and divided by the respective population,
you'd see that MSM and IV drug users are at a far greater risk of contracting
HIV than heterosexuals (by magnitudes of order).

However, that certainly doesn't infer that heterosexual can't get AIDS and
that they shouldn't seek to avoid it through appropriate measures.

~~~
jacquesm
Well yes, obviously gay people and drug users are not the bulk of the
population so that 32% indicates 32% of all of those that end up HIV positive.

For the mainstream population that is a _much_ lower risk than for a smaller
group that has a roughly equal incidence in absolute numbers.

But that risk is still substantial, and you do not want to end up as an entry
in the tally of that 32%, which is a substantial number of individuals, if
approximately 4% is LGBT then maybe 50% of those (so 2% of the population)
takes 68% of the cases, leaving 98% to divide the remaining 32%.

There are many lotteries with far fewer winners.

------
Panjam
Who on earth made the decision to pay prisoners for blood and not test it? I
realise it was the early days of HIV, but enough was understood at the time to
make that one of the most evil things I've ever heard.

~~~
sjburt
This occurred before HIV was isolated and identified as the cause of AIDS.
There was concern earlier on that there seemed to be a correlation between the
platelets products and AIDS cases but they had very little data.

~~~
npongratz
HIV wasn't the only known blood-borne pathogen, though, so I'm not going to
let "the authorities" off the hook.

Edit: To be clear, I know you're not making excuses for them either.

~~~
sjburt
Obviously, I don't know the details of 1970s/1980s plasma products, but I
think it's probably fair to assume that they were screening for pathogens they
knew about at the time. I think in retrospect it's easy to say that they
should have taken the factors off the market sooner, but at the time it was
probably a very difficult situation. Hemophilia is an incredibly dangerous
condition without treatment and there was a reasonable expectation that people
would die without access to clotting factors.

