The secret in my blood | Hacker News Reader

The secret in my blood

bbc.co.uk

98 pointsDanBC61 comments

… and no scientists tried to find out why he is seemingly resistant to the virus?? That is the _real_ secret in his blood.

There are known resistance especially in northern europe where up to 10% might be resistant to aids. You still carry the virus though (although at very low concentration)

There are strong suppositions that the locale distribution of the gene might be linked to earlier plagues (smallpox it seems).

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC299980/

The article doesn't say, but he may be an elite controller or something similar.

https://academic.oup.com/cid/article/51/2/239/303856

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.

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."

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

There have been quite a few cases of proven resistance against HIV, starting with a population of African prostitutes that somehow managed to avoid contracting the disease despite numerous unprotected encounters with HIV positive individuals.

Yes, there's active research into this sort of thing.

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.

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.

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...

> 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.

either way people are trying not to lose their jobs, and their paychecks, so they can keep eating. don't really see the difference.

Well, this was for the funding of a second round of sperm washing procedure, when they already had a healthy son through such a funded procedure. In the end they paid from pocket for the second one. Doesn't seem unfair to me.

As for being infected in the first place and getting compensated, I strongly suspect that a trial happened considering how many haemophiliacs were affected...

A single child is a loss to a country, 2.x is minimum every couple should have.

I wasn't under the impression there is a shortage of people on earth.

No. That is why 90% of all humans should have 2 children, and 10% should have 3. Or at least until large-scale space colonization becomes viable, then everyone can just go wild until the Dyson sphere fills all the way in.

A government health service should therefore not be cutting off fertility services any earlier than the live birth of anyone's second child, and should likely begin requiring additional fees for all child-related services starting with the fourth, or impose an additional tax on anyone with four or more biological children.

China's "one child" policy would probably have fared better as a "one son" policy. That equates to an average limit of two children per person, which is still below replacement fertility.

Are you under the impression that people are interchangeable and your child is just like any other human on Earth?

No, to be clear I fully support the idea of fertility services provided by the public. I just don't think a nation's population is a good argument for this.

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.

https://www.theguardian.com/society/2017/sep/26/contaminated...

NHS: Sorry, mate, that's not “exceptional circumstances.” Haven't you heard? We've done it to over a thousand people.

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.

Here's the journalist's twitter account. https://twitter.com/mrjonkelly

Here's another article he wrote: 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...

> 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.

Mainly because gay men and IV drug users were disease vectors.

No, they were merely the first populations where HIV was detected because their risky behavior made them more likely to contract HIV/AIDS.

But there were many other vectors besides needles and unprotected gay sex (see article linked), in fact, the index patient simply consumed bush meat that they probably should have left alone.

Yes, the first widely recognized case of HIV in the United States involved a highly promiscuous gay flight attendant, and this likely sped the spread of aids in the first period in the United States up considerably.

But once non-gay people became infected it did not take all that long before they were the bulk of the HIV positive population.

Even so, gay men engaging in unprotected sex and drug addicts re-using needles or swapping needles with others are at extremely high risk for HIV and Hepatitis contraction.

You claim the majority of HIV patients in the United States are heterosexual. Do you have any evidence of this? It cuts against everything I have ever read on the topic and everything I and other people in this thread can churn up.

Reminds me of GDPR threads.

I would say that so far what I wrote there has been spot on. The sky didn't fall, nobody got sued, all the fear mongering was for naught.

Definitely true!

You are 100% correct, apologies. Even so, be careful to extrapolate to the rest of the world and the odds are not such that you can make it seem as though HIV is a gay/drug user condition and that the rest of the population can ignore it, anything but and such thinking would inevitably lead to the pendulum swinging the other way again.

Publicly adjusting your beliefs in response to evidence is super rare and and extremely important skill. I really respect that you took the time to do this throughout the thread.

Not in the United States - but it is my understanding that AIDS is common in heterosexual people in areas hardest hit, like sub-Saharan Africa. Some countries have infections as high as 20%, which seems very likely to include more straight people than gay people.

The United States only has a fraction of the world's HIV or AIDS cases, so it seems plausible that worldwide straight people could still represent the majority of cases.

It does seem difficult to get reliable estimates outside the US & Europe, though.

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

It is taboo in Western culture to make certain priors explicit, especially when they are accurate.

It is taboo on HN to state unsupported BS, especially when it is inaccurate.

> 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

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.

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.

https://www.cdc.gov/hiv/statistics/overview/ataglance.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...

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

UK -> 54% of new HIV infections are MSM http://www.catie.ca/en/fact-sheets/epidemiology/epidemiology...

Yes. This matches what I found. Jacquesm writes with such assurance and from such a high ground. It will be interesting to see if he replies.

See above. I do have to eat every now and then :)

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.

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.

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.

Source? For new USA infections in 2015 it was 77% drug users and gay and bisexual men.

https://www.cdc.gov/hiv/statistics/overview/ataglance.html

It’s possible I am wrong, but everything I am Googling seems to say that more than 50% of new HIV transmissions are among gay men alone. Perhaps this is changing, as I would not be surprised if extremely unsafe sexual practices are becoming more common among heterosexuals - and even a small effect here would have outsized impact given the relative proportions. I would be happy to adjust my prior on this if you have some accurate demographic information you would like to link to.

It actually has changed, in the West the balance has shifted twice now, but globally (esp. Eastern Europe, Asia, Africa, Latin America) things are still as I described.

So thank you for causing me to update my prior.

It's possible that you're both correct. All those stats you link actually say around 50% of new transmissions are a result of male-on-male sex, which is later changed to "gays and bisexuals" in the reports. Those terms aren't exactly interchangeable, with some of the riskiest MSM groups may not consider themselves gay, such as sex workers, rape victims, and inmates.

I don't want to argue the statistics, you probably know them better than I do. At least historically in the US AIDS:

> found its way to the United States as early as 1960, but was first noticed after doctors discovered clusters of Kaposi's sarcoma and pneumocystis pneumonia in young gay men in Los Angeles, New York City, and San Francisco in 1981.

Please don't equate being a little under-informed or less up to date with stupid thinking.

EDIT: Ah, I think I mis understood your post. Your example at the end was of poor thinking but I don't the think the parent you had replied to was making that mistake either.

That's not what the CDC says.

77% of all new infections are either homosexual men (68%) or IV drug abusers (9%).[1]

[1]https://www.cdc.gov/hiv/statistics/overview/ataglance.html

They may be thinking locally and not globally. I for one know that AIDS is wider spread in some other countries, but I don't have any idea of it's prevelance in my own country.

I think that stereotype was about U.S. (among other places). Do the stats for the U.S. only reflect the stereotype at all, or is it completely unfounded at this point?

Not that it excuses the stigma associated with having the disease. But, global statistics are very different than from those in the western democracies where "the media" and much of their audience resides. In the US the majority of HIV patients are the MSM (men who have sex with men) category [0]. With most of the remaining being either women who have sex with those men or IV drug users.

[0] https://www.cdc.gov/hiv/statistics/overview/ataglance.html

>Most of the people in the US with AIDS are gay men and drug users.

I believe you need to say "gay men or drug users". Regardless, it's better not to assume things about other people. The "stigma" jacquesm refers to isn't a matter of assessing the likelihood that someone is gay, it's a matter of the judgment these people receive as a result which has prevented people from receiving treatment, and still does.

In the media? That was (and still is) the reality of the situation as regards HIV infection rates.

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.

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.

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.

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.

1986! Is that correct?

Reply on news.ycombinator.com