NIH Plans To Lift Ban On Research Funds For Part-Human, Part-Animal Embryos

[Buckeye_Democrat]

47. I understand

I have a rare genetic condition that causes early blindness. I went blind in one eye already.

I started experiencing distortions in the other eye about two years later, an indicator that blindness would soon follow.

My ophthalmologist suggested an experimental drug that had shown great success, and I signed a legal waiver to have it injected in my eyeball. It worked! The distortions went away and blindness was thwarted until the next time that distortions were observed. I've received about 25 injections over the last 10 years, and I still have my eyesight in one eye. I would otherwise be disabled, unable to drive and most likely receiving government disability for blindness.

The drug is called Avastin. It was developed by scientists at Genentech to treat colon cancer. For those patients, it's injected into their bloodstream from IV bags. It's not a very effective treatment for colon cancer compared to others, so there's many times that hospitals don't use those IV bags at all. Based on how it works on cancer cells, ophthalmologists in Florida decided to try the drug to treat patients experiencing similar problems to mine. It proved extremely effective, and word spread of this wonderful eye treatment.

I started to go into lengthy details, but I deleted it. I'll just cut to the chase and tell you that, a few years ago, the owners of Genentech decided to be greedy and tried to make it illegal for ophthalmologists to divide those unused IV bags of Avastin. They claimed that they were "concerned" about the drug being contaminated during the division into smaller samples, and they wanted exclusive rights to sell the smaller samples under the name Lucentis for much higher cost. Instead of me paying $300 per injection, it was going to cost me about $2500 per injection under their proposal! Insurance would not help pay for it because Genentech didn't include people like me in the FDA study for Lucentis.

Thankfully, ophthalmologists all over the country raised a big stink about it and Genentech finally backed off. I feel confident that several scientists at Genentech were probably opposed to the greed as well, although I never heard any public statements from them (which would probably cost them their jobs).

Now that I've shared that, I'll just say that I ultimately think there's something fundamentally wrong with how legal contracts are written in this country. I'm not a lawyer, but I've observed many cases over the years when certain people become quite wealthy simply because they have a contract that gives them "ownership" of ideas and technology. I understand the basic idea behind patents and other contracts to reward people for their intellectual work, but it's reached the point where the intellectuals are given scraps for their work while business parasites reap the biggest rewards.

Even Bill Gates, who I appreciate in many ways for his philanthropic work, mostly became insanely wealthy due to legal contracts. He didn't develop DOS himself. He purchased it (and thus had legal ownership). He then used another contract with IBM to essentially have an early monopoly in computer software. I don't think it's a coincidence that Bill's father was a lawyer. By the way, I saw Bill Gates participating in a computer trivia contest many years ago, and I did better than him at answering the questions! I majored in math & physics, not computer science!

It;s ultimately how contracts are written (and enforced by our government) that causes many issues.

Back to the human-animal chimera issue... nobody is yet developing them to term. As of now, studies are underway to observe the fetuses to see if there's any unwanted results... such as the human stem cells interacting with the animal's brain and nervous system. The early results have apparently been promising. The animals have their genes altered to prevent them from forming a particular organ, and the human stem cells seem to only help form those organs. Without further study, scientists can't even be sure that ethical concerns are warranted. (Except from the same kinds of people who believe in souls and likely opposed human to human organ transplants as well.)