> This isn’t about “hacking things” to make them better it’s about having a bit of hope your life isn’t going to be horrible forever.

This is also the rabbit hole of how quackery thrives, parasiting off the hope or desperation of ill people.

Except HIV isn't a death sentence. You can manage it with tools that already exist while these things are tested. If you were dying soon, sure, I get wanting to try the moonshot. That's not the situation we are talking about.

Quality of life matters to people. There are worse things than dying.

I don't have HIV, but my understanding is that it is extremely manageable. Would you rather be HIV positive or diabetic?

https://www.spectator.co.uk/2014/04/why-id-rather-have-hiv-t...

I am diabetic and I'd rather be neither.

Touche

With modern treatment, most HIV positive peoples' lives aren't "horrible forever". It is not the 1980s.

What is “most”? Who decides which people with chronic illnesses have a low quality of life?

Nobody `decides` anything. Some people just don't have the funds to afford these treatments, and as much as it sucks, these treatments take resources and someone needs to cover that.

A great project which attempts to consider many of the possible things that people with a terrible illness think of trying to fix it is ALS Untangled, http://http://alsuntangled.com

A group of experts on ALS (aka Motor Neurone Disease or MND) evaluates various alternative therapies for the condition, considering factors including scientific plausibility, risks, etc. Some of the proposed treatments are totally implausible, like injecting something into a place where there's no reason to expect it would have any effect. Others are obviously scams. Others are conceived and sold by well-meaning people who make sick people feel some hope thanks to a positive and helpful demeanor, but who unfortunately don't have anything medically useful to offer.

With the proper treatment, HIV has a negligible impact on your quality of life and no statistically significant impact on your life expectancy. Modern antiretroviral drugs have minimal side-effects and most patients experience no long-term side-effects whatsoever.

Highly active antiretroviral treatment is a goddamned miracle. One pill a day turns a death sentence into a complete non-issue. I can't help but question the mental health of someone who would reject such an astonishingly good treatment in favour of being a human guinea pig.

https://www.aidsmap.com/Life-expectancy-near-normal-in-peopl...

> With the proper treatment, HIV has a negligible impact on your quality of life

Just to be clear your statement is 100% false:

http://nymag.com/health/features/61740/index3.html

My thoughts exactly. Regardless of whether HIV is a "death sentence" or not in this day and age, it's at best an extremely undesirable illness that many would give everything they could to be rid of forever.

What they did was obviously stupid, but desperation makes you do stupid things.

Wrong, worst case scenario isn't that he just kills himself. The worst case scenario is someone else points to this story as justification to sell their off-the-shelf gene therapy kit and thousands of naive people die as the result.