Thread by @CarolineYLChen

NEW STORY: Today @ProPublica and @thenewyorker published my story looking into the wild world of amniotic stem cell therapy, made from donated birth tissue & sold to patients for $5k-$10k to “treat” everything from Alzheimer’s to erectile dysfunction...

2/ I’ve spent the past few months unraveling the supply chain. The economics reveal why this market is exploding (from a handful of stem cell clinics in 2009 to 700+ in 2017). Amniotic treatments are the latest “technology”. Here’s how it works:

3/
- A mother donates her birth tissue for free.
- A manufacturer makes a vial of product for <$50
- The maker sells it to a distributor or direct to a clinic for ~$1k.
- A clinic charges $5k-$10k per treatment. Patients pay out of pocket.

4/ Some things I found along the way:
- disgraced doctors turned marketers
- fake doctors on a clinic’s website
- manufacturers with criminal records

- a dearth of scientific evidence

5/ It’s so hard for patients to know what’s in the vial. Researchers told me:
1) the cells could be mostly dead
2) any living cells are fibroblasts/other unhelpful cells.

Patients are forking over $$$$ for a bunch of potentially dead cells.

6/ I realized that this industry takes advantage of people in especially vulnerable stages of their lives -- mothers giving birth who don’t have time to be asking questions about where their donations are going, & patients with chronic illness who are desperate for help.

7/ Some people say they have benefited from stem cell products. Maybe something in birth tissue could be therapeutic. But until proper trials are done, we won’t know. In the meantime, other patients have suffered terrible infections. It’s a big gamble.

8/ Meanwhile the FDA has been MIA for a decade and only recently has embarked on regulation. Former FDA head Scott Gottlieb says the agency “took enforcement discretion” for years, and now it’s “hard to step in and actually apply the regulation.”

9/ I asked one doctor what diseases could be treated with the product he sells for $5,000/injection. He said: “They do everything, because stem cells are our friend.”

Think again.
Take a read here: propublica.org/article/amniot… or newyorker.com/news/news-desk…