Disease names

It’s long past time to stop naming rare (or any) diseases after the people who discover them.

Naming chemicals and elements and other scientific discoveries makes sense… mostly. (Too many times where the people who did most of the work didn’t get any of the credit.)

But diseases aren’t just diseases. There are human beings attached to those diseases. Human beings who likely experienced years of suffering, misdiagnoses, incorrect treatments, possibly disbelief or being treated poorly, perhaps accused of malingering. Who knows how many people died without knowing what was wrong with them.

Give diseases accurate names.

We really don’t need any more Asperger’s syndromes.

Book: China Rx by Rosemary Gibson and Janardan Prasad Singh

Before I got sick, I worked in pharma. I had a great pharma internship as an undergrad and I felt like I’d found my niche. I enjoyed analytical chemistry and I had a real knack for anything medical. I worked in the industry for a couple years, then took an analytical chemist position in another industry mainly because I wanted to move closer to my future spouse. I missed pharma and tried interviewing for positions closer to my new home, with no luck. (Probably for the best: the best prospect was at a brand new state-of-the-art research and development facility, which laid everyone off and shut down 6 months later.)

Once started treating celiac disease and adopting a mobility device for a failing back, I was ready and able to go back to work. But no one wants to hire a chemist who’s been out of the industry for nearly a decade. And by then, many of the jobs had moved overseas.

So this book was personally relevant.

China Rx describes the long game played by the Chinese government to become the only supplier of necessary items, including medications and supplements. Since the US government (and its corporations) is far more concerned with this quarter or this election term, it puts the Chinese government in a far better strategic position to achieve its long-term goals.

The US used to make its own antibiotics, vitamin C, and other drugs and drug products. Nowadays, much of the manufacturing of critical raw materials happens in China, because it’s cheaper. Drug companies want to maximize profits, which means purchasing raw materials at the lowest possible cost.

The book describes the heparin horror story when tainted heparin (a blood thinner used regularly in hospitals as standard practice to prevent blood clots, and which, incidentally, is a meat industry byproduct produced from the entrails of slaughtered pigs) sickened and killed many people. When the problem was identified, the FDA did not rush to act because recalling the US heparin supply would’ve caused a national shortage. It’s better to have potentially tainted heparin than no heparin at all.

The book also describes incidents in which Chinese companies prohibited from exporting to the US would use a different company’s label to circumvent bans and export to the US. These companies are partially owned by the state (Chinese government), so it seems more reasonable to assume this is a strategic governmental move, not unscrupulous business owners (although that happens, too).

One of the reasons China can manufacture so cheaply is its lax environmental regulations. For example, making antibiotics is a dirty job. It stinks, there are waste products, and an impact on the local environment. (Soil, air, water.) Rather than spending the money in the US to innovate a cleaner, safer manufacturing process, they outsource the same old ways to a region whose government doesn’t worry about it (to the detriment of its citizens).

The book discusses lax and loosening trade regulations that resulted from supply chain issues. The US military now relies on China for critical medications and medical devices. The US used to manufacture its own penicillin in wartime, but now it relies on China for the only treatments available for anthrax.

The FDA really has very little control over what comes in from overseas, and not much control over what happens in the US either. Recalls are voluntary. Testing is rare. The FDA lacks the manpower, authority, and budget to effect much change. And the revolving door between pharma and the FDA means that few people want to speak out. (Not to mention the overt censorship happening.)

Chances are, most of your medications and vitamins were manufactured in China. If not the entire product, then critical components like the active ingredient and/or the inactive ingredients responsible for extended release dosing. But labeling rules make it very difficult to figure out where your medicines are made. If you’re curious: you can call the manufacturer directly, and sometimes you can find the info on DailyMed or drugs.com.

It was interesting (if depressing) reading about places I’ve physically worked (and learning that some of those places no longer exist), and seeing what happened after I got sick. I know now that it wasn’t solely a long illness that prevented me from reentering the industry, but also many, many changes far beyond my control.

Bad covid science

Today a nurse tried to say “Damn China since the news has finally agreed it is a man-made virus from the Lab in Wuhan.” A quick search brought up Snopes’s take, and “all” the media outlets are right wing or known tabloids… hardly “all.”

I’ve had a lot of bad healthcare experiences in my life. It’s hard to trust any of them when you don’t know which ones are buying into this drivel.

It’a dangerous out there for patients.