Tim Barrus: The New York Times

This was originally written in response to the NYT’s piece on gene editing. The two children who are now free from acquiring HIV are lucky.

The rest of the world moans and groans. The rest of the world is shit.

As I was writing this, I began to see how it could also serve as a vehicle among the Smash Street Boys as we talk about death and disease. We, too, are lucky. To be able to support one another during times of extraordinary questioning.

The Smash Street Boys are now writing, and writing, and writing. Some of it will go into their video: WHEN DEATH IS BEST.

AIDS is not over.

Question everything.

I would do anything – ANYTHING – to not have HIV. Modern medicine balks.

They are a huge part of the problem. In fact, they are the problem.

The HIV rhetoric that we can now lead normal lives is a blatant lie.

They lie.

My life has been ruined. Not by HIV. But from the unmitigated, unnecessary, intransigent, abusive, constant, persistent, sustained, and invasive procedures and examinations that you are forced to have by a contingent of medical personnel, or they quite simply refuse to prescribe medication that is so expensive, it will break the bank.

Try $133,000 a year.

And people wonder why I am such a money-grubbing horror.

Insurance companies can refuse and do refuse to cover claims related to HIV. They can and do decline to cover people with the disease.

I am sick because I was raped.

Every single time I walk into that filthy clinic, I feel like I have been raped again. Over and over and over.

How do you hold a job (or attend school) when you are spending your life in a waiting room.

How do you live a life when the only health care is a hundred miles away.

How do you live a life when the HIV pharmacy tells you to come back at another time because they do not have the medication, and that one hundred mile drive was for nothing.

How do you live an organized life when the pharmacy’s phone number is a closely guarded secret.

This is not a life.

I don’t want to live it. I hate it. 

And I hate the medical people who ruined it. HIV is nothing.

https://www.nytimes.com/2019/01/23/health/gene-editing-babies-crispr.html?comments#permid=30341626