Right to try bankruptcy?

The first case concerning the recent Right to Try legislation has come along and it involves Matt Bellina, one of the patients who pushed to pass the legislation in the first place. Before diving in this writer just wants to say—damn this guy is really a fighter. He’s not only a veteran battling ALS, but he also got legislation passed in freaking Congress, which isn’t easy. His case involves a cell therapy being developed by BrainStorm Cell Therapeutics, a biotech with no currently marketable treatments. It’s planning on addressing Right to Try applicants in a semicommercial model that they say won’t exploit patients. But since the company is pre-revenue there’s some big ethics concerns about how to charge vulnerable patients for the expensive treatments, which the law may not address.

Now we’re not going to begrudge anyone at the end of their rope looking for anything that can help, but we do have some strong opinions on the subject. Listen to our recent discussion on Right to Try here in our second InsightCity podcast.

$100M wasted on booze

The Moderate Alcohol and Cardiovascular Health Trial (MACH15) was designed to observe the effects of moderate drinking versus being a nerd responsibly abstaining. But the National Institutes of Health has shut down the study after compromising contacts between scientists and alcohol industry executives were exposed by The New York Times. The NIH conducted its own internal investigation of the claims that scientists had courted these executives to fund the study through a nonprofit—which itself is a violation of government policy. The investigation found staffers “hid facts” from team members, apparently to frame the study in a pro-alcohol light. Talk about beer goggles. Score one for ethics in research at least.

Who owns your health data?

Big topic for a short article but here’s the skinny… you receive a scan for some legitimate reason in the course of receiving health care. Scientists and companies use your images—stripped of all personally identifying information—in the development of artificial intelligence that is able to diagnose disease. These people and companies make gobs and gobs of money. Are you owed compensation because their commercial product could not have been developed without using “your” scans? This is somewhat different—it could be argued—than the famous case of Henrietta Lacks, whose live cells were used and commercialized. (By the way, she also got no money.) These are just scans. Ones and zeros, right? Here is a more complete report from NPR, with modern-day cases. Let InsightCity know what you think in this week’s FastPoll™.

Big Sugar’s not-so-sweet research practices

Cristin Kearns, assistant professor at the UCSF School of Dentistry, stumbled across a decades-old research paper that shows a link between high-sugar diets and both high triglyceride levels and cancer in rats. But she had to stumble across the study because it was never published in a scientific journal. Oh, I almost forgot…the study was sponsored by the sugar industry. The implication, of course, is that the organization, now called The Sugar Association, buried the findings to avoid likely negative commercial implications. In response, The Sugar Association has stated that the study was never published, in part, because it was significantly delayed and over budget. In other words, they probably wouldn’t have published the study even if a high-sugar diet showed health benefits. As King George once said, “If you buy that I’ll throw the Golden Gate in free.”

A womb with a view

According to a recent study published in Nature Communications, scientists have developed—and successfully tested—an artificial womb that sustains and nurtures babies born prematurely. The “womb,” essentially a large sandwich bag with tubes, is designed to closely mimic the real thing in all important aspects. The bag is attached to an external machine that pumps in oxygen and nutrients and removes carbon dioxide—just like a placenta. So far, the device has been tested with preemie lambs with reportedly amazing results. According to Alan Flake, lead surgeon on the study, the lambs have exhibited “normal development in every way that we can measure it.” In three to five years Dr. Flake hopes to be testing the technology in human preemies. Here come the ethics questions!

That fine print ain’t so fine

It’s one thing to make a profit but it’s another to excessively charge uninsured patients nearly double the amount for the same diagnostic tests that insured patients receive. Two separate lawsuits filed in New Jersey and North Carolina allege that diagnostics firms, LabCorp and Quest Diagnostics purposefully made their billing forms difficult to interpret and routinely overcharged uninsured patients at rates far above the market price. Ouch. Plaintiffs are seeking reimbursement of fees and damages. Both lab companies maintain they haven’t engaged in any shenanigans. Is this where we begin to analyze the difference between what’s “legal,” “immoral,” and “amoral?”