Parents Deliver Ashes of Diabetic Children to Price-Gouging Insulin Manufacturer

Nicole Holt-Smith arrived at pharmaceutical giant Sanofi’s research facility in Cambridge, Massachusetts, on Friday carrying a powerful testament to the consequences of price gouging essential medicines under a for-profit health system: the ashes of her son, Alec.

Alec Raeshawn Smith lived with Type 1 diabetes and lost health coverage under his parent’s insurance plan when he turned 26. He died last year after attempting to ration his insulin supply by cutting doses to make it last longer. Along with Eli Lilly and Novo Nordisk, Sanofi is one the three major insulin manufacturers accused of gouging diabetes patients worldwide who use the blood-sugar regulating hormone as a prescription drug in order to stay healthy.

“Sanofi’s high prices are killing people like my son Alec,” Smith-Holt said in a statement before the action. “I’m sick of them listening to my story and then doing nothing. I’m not asking them to lower prices anymore, I’m demanding it.”

Along with parents of two other young people who died rationing insulin, Holt-Smith attempted to deliver Alec’s ashes to Sanofi officials during a protest at the research facility on Friday. The parents were flanked by dozens of local diabetes patients, doctors, nurses and students affiliated with the Right Care Alliance, a grassroots group fighting for a health care system that puts people over profits. The Democratic Socialists of American and Physicians for a National Health Program also organized the action.

Police blocked protesters from approaching the Sanofi office, but organizers negotiated with them to allow the parents to deliver the ashes of Alec and Antavia Lee-Worsham, who also died while rationing insulin last year. Security guards then turned the parents away at the front door, threatening them with arrest. All of Sanofi’s employees had been sent home for the day, according to Right Care Alliance spokesperson Aaron Toleos.

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Our current technology on how to make human insulin wasn’t discovered until the late 70s and approved by the FDA until 1982. It requires putting a human gene in E. coli. This was the first time this recombinant technology was used for a pharmaceutical so it had a very rigorous approval process. Prior to this, we would use purified bovine or pork insulin to treat patients. This is far from ideal as it was not the real stuff. Problems like less potency, rapid degradation, allergy were common. Basically, it was difficult to emulate a healthy human pancreas this way.

You can get earlier versions of recombinant insulin at Walmart for $25 per vial and we often still use it in our uninsured or underinsured populations. However, they are far from state of the art. At first the drug companies just made the exact copy of the human insulin peptide. Initially, that seems like it would be the best and arguably would be if you could constantly infuse it into the blood of a patient. But that’s just not possible. So to understand the problem in the drug delivery, we must have a basic understanding of how a healthy human pancreas secretes insulin. Insulin is being constantly infused at low levels directly into the blood. You always need some there or your body will be locked into a metabolic starved state. In response to eating, you’re pancreas releases extra insulin rapidly. This tells your body that there will be more sugar coming in so get ready to use more of it and store the excess. This is pretty short lived and you return to baseline quickly.

So here lies the problem with the old stuff. It takes a while to onset, it peaks and then tapers off into no insulin. We can’t make it peak like a heathy pancreas would after eating and we can’t get it constantly there at low levels either. So we’re better off than we were with bovine/pork insulin prior 1982 but not to where we are today. The patients I have seen on these older insulins are poorly controlled. But we have no choice since all these patients on these that I have seen are uninsured.

More recently, companies had the idea that we could better emulate the human pancreas by changing the insulin formulation or structure to make one that is extremely long lasting and doesn’t have a peak (for basal levels) and one that peaks really really quickly and then degrades just as fast (for eating). When you overlay the two, you can get pretty close to a real healthy pancreas. But here lies the problem in the cost. Different variations of these newer versions were approved by the FDA in 1996, 2000, 2004 and 2006. They are relatively new!it’s best for the patients health to use these newer medications and I think it’s justified if when considering the economic stewardship of prescribing the “latest and greatest”.

These alterations to the formulations and structures took many man hours of research and development and so they are expensive. Another issue to the cost is the very technology that produces it. A company can’t just do large scale chemistry like Bayer can for aspirin. These are made by E. coli. This introduces a few problems. 1) companies are at the mercy of the rate that E. coli can reproduce and synthesize the insulin. 2) it needs to be manufactured in small batches because the risk of contamination is high. Due to the nature of E. coli being a bacteria, it’s easy for there to be virulent strains and species of bacteria to also grow. This requires large amounts of quality control.) 3) The bacteria can lose expression of the protein. If you think about it, expressing human insulin offers no competitive advantage to these cells and actually is a big stress. Natural selection selects against the insulin expressing bacteria over time making another quality control issue. 4) peptides are fragile. The structures can be ruined by things as simple as vibrations or temperature changes. Now that the newer insulins are off patent, these production challenges make it near impossible for generics to be made.

With the passage of the Affordable Care Act, a large amount of people were given access to these more newer drugs than before. This part is explained by basic supply and demand economics. The demand for the newer drugs went up. The quality control issues/production challenges previously described have made it difficult to drive up supply proportionately. This increases the price of the drugs.

There’s another important economic explanation to drug costs today. Pharmaceuticals have the highest risk of any investment. The only way private markets invest in these is by making the return on a successful investment extremely high too. Additionally since the new versions required a huge investment from private industry, they need to be rewarded with a patent. Otherwise there is nearly no incentive to invest at all. Personally, I think we can address that by transitioning more R&D into government and academic institutions.

The explanations of corporate greed, over regulation and so forth show a lack of insight into the very real challenges in legislating and regulating pharmaceutical companies while maintaining a capitalist incentive system to promote private investment.

tl;dr: new insulins were fda approved in the 80s-00s so they are that new. Economic theory and history plays an important role too.

Unless its ashes within bullets, they wont give a shit.

This, big pharma will kill people without even batting an eye, against such enemies the people must be willing to take actions of equal or more impact.

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This. Big pharm is evil but the parents are scummy - their kids wouldn't even get a chance to live without modern tech, and for all intents their inferior dna should weed them out. If you wanted your kid to live you should have been ready to fight against nature itself, and not expect a handout. Putting the kids' deaths on display like this is sickening. The parents should have thought more before bringing someone into the world that would face constant hardship and suffering.

Dead children are not an argument. It is nobody else's obligation to keep your offspring alive than your own, it's a billion dollar industry with a lot of lives on the line. A hasty tax increase or price control because "muh kid" is not going to help more more than for the immediate.
What would help is for persons who are affected and interested to crowdfund the treatments for those who cannot afford it. But of course that requires more effort from themselves than just complaining about how it is the current year and everything should be free because corporations are mean.

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Enjoy curing your AIDS by dancing around a fire when the investors pull their money out of pharma.