The People Who Fall Through The Cracks

It happened again today, I got another email from a man watching his son slowly die of a genetic disease who’s hoping I can help him.

Every biohacker who’s ever been in the media has gotten these emails. These are some of the people who’ve been failed by our medical system. They’re strong and they don’t go down without a fight, but they’re desperate and afraid because the system can’t give them what they need.

They ask if I can cure them, if I can teach them how to cure themselves, if CRISPR can save their child, if gene therapy can give their partner a full measure of life, if I can just help them understand what’s happening, or even just what can and can’t be done.

The problem is, I am not a doctor, and I don’t have a medical degree.

I have a genetic disease myself – it’s called benign hereditary neutropenia. It almost killed me several times as a baby and young child. It was hoped when I was born that I would be able to donate bone marrow to save my older siblings who were struggling to survive it themselves. My parents had three dying children, I can’t even image it. I decided as a teen to never have children of my own because I didn’t have the courage the face what they did. I didn’t feel like my genes were good enough to pass on anyway. Fortunately fate had other plans and my daughter was born healthy, later on so was my son. Their health is one of many reasons I know I’m a very, very lucky man. Like my parents though, not everyone who carries a dangerous genetic disease is so lucky.

I see my parents in these people, I see myself in them. I see the fate that I so narrowly avoided. I do everything I can to help them understand the technology, what’s possible now and what’s not. I try not to give people false hope. I try hard to answer all their questions as clearly as I can, but I don’t have the training to do this.

Imagine what it would take for you to ask a biohacker that you saw in an article online about your terminal medical condition. What hoops would you have jumped through already? How many doors would have already been closed to you? How desperate for answers would you have to be to find yourself there?

If you had a terminal illness would you just accept it? Would you just wait for suffering and death to come? If you do choose to fight back and to push for life, will the system help and support you? Will it take the time to help you understand what is and isn’t possible with new technologies?

From what I have seen, there is no one to help the terminal.

People aren’t getting the answers they need from the medical system, and they turn to outsiders in hopes that answers will materialize. Personally, I try to answer all the questions I get to the best of my ability. Sometimes I end up doing hours of reading medical and scientific literature to find their answers. While I do that, I always wonder, Why there isn’t a place for people to get answers to these kinds of questions? When this many people fall through the cracks in the system, it’s a clear sign that the system is missing needed parts. Do we need a public genetic counseling service? Are there other options? In a properly working system would it ever fall to biohackers to pickup where the doctor left off?

The system is consistently failing people with genetic diseases and they come to us for answers. They should be able to get answers to all their questions, even the crazy ones born from pain and hope and they should be able to get them from the medical care system. In the US we have the most expensive healthcare system in the world, why isn’t that enough to pay for adequate care so people don’t fall into uncertainty and desperate choices?

Genetic diseases also carry a special psychological burden, and people blame themselves for being carriers of conditions that are killing their children. People feel genetically inadequate to have children if they know about the diseases they carry. There is a difference between feeling sick and feeling defective. People feel helpless and cling to every desperate hope because every morning when they open their eyes they know the pain and loss they fear is one day closer.

They deserve not only the best physical care but also the peace of mind that comes from actually knowing what can and can’t be done. They deserve free access to the scientific literature without having to pay for it. They deserve to know that they’re doing the very best they can and to understand why. Especially when the answer is that despite the glowing optimistic headlines, their child will probably die before the research is finished. At the very least, they deserve to know for sure that it was just the cruelty of fate and not their lack of courage and initiative that failed to save the person they love.