New class of drugs play a dangerous game of genetic roulette

Steven Pete, a 34 year-old man from Washington, can’t feel pain.

His rare genetic condition nearly caused him to bite off his own tongue as a baby.

One of his legs is permanently disfigured due to injuries he never felt — and he could put his hand on a hot stove without ever realizing it.

But when Big Pharma scientists learned of Pete’s condition, they weren’t interested in curing it. In fact, they want to give it to you instead.

Some of the largest drug companies in the world are using people with life-threatening genetic disorders as lab rats. They’re mining, mimicking and exploiting these patients’ extremely defective genes to develop meds for high cholesterol, osteoporosis and even pain.

It’s a disturbing game of genetic roulette. One that puts us all at risk and could unleash terrifying, life-long side effects like nothing we’ve ever seen in medicine.

DNA disasterWhen Regeneron and Sanofi got their new cholesterol med Praluent approved, they didn’t just open the door for new gene-altering drugs.

They practically kicked it in.

Praluent is supposed to lower your cholesterol to unheard-of (and potentially deadly) double digits. And it was patterned after people who have a rare genetic disorder — a broken PCSK 9 gene.

The drug works by blocking that gene, which controls how much cholesterol your liver makes.

So soon, we’ll have legions of people taking a shot that will give them this same rare disorder the drug companies should be trying to cure.

But Praluent was just the opening act in Big Pharma’s quest to mine patients with serious genetic disorders to make billions selling us new drugs.

In fact, when a top scientist at Amgen met 25-year-old Timothy Dreyer, he called the man a “gift from nature.”

But you can bet Dreyer doesn’t feel that way. He suffers from a genetic disease called sclerosteosis that causes abnormally thick, dense bones. And that includes the skull, which can thicken and cause agonizing headaches.

Dreyer started having facial paralysis as a child, lost his hearing, and has undergone several operations just to relieve the pressure on his brain.

But when Amgen looks at Dreyer, all they see are dollar signs. They’re modeling his faulty genes to create Romosozumab, a new osteoporosis drug that’s now in its final clinical trials before FDA submission.

Not everyone is being fooled by this eureka moment in pharma land, however.

Some experts are saying that Romosozumab only gives a fake impression of strong bones. By stopping the protein that inhibits new bones from forming, the drug would also halt the body’s natural bone “remodeling process.”

So you can end up with bigger bones, but ones that are hard, brittle and more prone to break — just like Dreyer’s.

Of course, that could be just the beginning of the horror in store for unsuspecting patients who will be prescribed this drug. What if by duplicating Dreyer’s condition, your skull begins to thicken? Or maybe people will start to get facial paralysis and go deaf, as Dreyer did.

The science — and the unknown potential side effects — that companies like Amgen are fooling with are almost too terrifying to consider.

And what about Steven Pete — the man who can’t feel pain?

Genentech, a division of drug giant Roche, is hoping to copy his genetic disease to create a new pill that will just “prevent pain and not cause a bunch of other problems.”

Lots of luck with that idea.

But with all the research, money and billions to be made with these new genetic disorder drugs, it doesn’t look like Big Pharma is doing much to help Pete or Dreyer.

Dreyer is conducting research all on his own, trying to raise $162,000 — couch cushion change for the drug companies — to find a cure for his condition.

“I do think it would be nice if they could help us out now that they understand our disease,” he said.

But it looks like unless they can help themselves to Timothy Dreyer’s genes — or our cash — Big Pharma isn’t interested.

Sources:

“These superhumans are real and their DNA could be worth billions” Caroline Chen, July 22, 2015, Bloomberg, finance.yahoo.com

“Latest osteoporosis news” Vivian Goldschmidt, MA, Save Our Bones, saveourbones.com

“New drugs treat effects of osteoporosis” Alyson Ward, May 21, 2014, Chron, chron.com