Some were faced with the choice of paying their rent or paying for insulin. A few saw their children die after they rationed the lifesaving medication.

They were all part of a group of protesters stationed outside the Cambridge, Mass., office of insulin maker Sanofi on a recent morning, rallying against the rising price of the drug.

“I’m demanding Sanofi to decrease the cost of insulin. It is a medication that all type 1 diabetics need to survive. And without it, they will die like my daughter did,” said Antroinette Worsham, of Cincinnati, founder of the nonprofit T1 Diabetes Journey.

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In April 2017, her daughter Antavia Lee-Worsham, who had type 1 diabetes, died at 22 after struggling to pay for insulin. She had aged out of an assistance program at 21 and would sometimes get insulin from her sister Antanique, who also has type 1 diabetes.

Worsham, along with Nicole Smith-Holt and James Holt, brought the ashes of their children, in hopes of giving them to Sanofi executives. However, they were stopped by cops and were not allowed on Sanofi’s grounds.

“Nobody would come down and face me,” said Smith-Holt, a financial aid specialist from Richfield, Minn. “Nobody would take his ashes … so it’s frustrating. It makes me very angry.”

Her son, Alec Smith, died in June 2017 at the age of 26, weeks after aging out of her health insurance plan.

According to a 2016 analysis, the estimated annual cost of insulin per patient nearly tripled over an 11-year stretch, from $231 in 2002 to $736 in 2013.

Sanofi is among the nation’s largest insulin makers — several of which have hiked the prices of the drug in recent years.

“The price gouging has become such a problem that insulin now costs more than my rent, and I have to choose,” said Myranda Pierce, a graduate student at Boston University School of Medicine who has type 1 diabetes.

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Sanofi spokesman Nicolas Kressmann said in an email statement he shares “similar concerns” with the protesters. He encouraged people with diabetes who cannot afford their medication to call the company’s hotline at 888-847-4877.

But Pierce said programs like those are not enough.

“I shouldn’t have to go beg for my insulin. It should be affordable to me.”

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  • Dear Jackie:

    Additional information

    The very harsh reality is that pharmaceutical companies have cleverly taken off market older equally effective human insulins and replaced them with slightly changed (technically no longer human) insulins in order to force higher prices upon primarily the American patient.

    Where are all the so called concerned physicians and health policy specialists at the Harvard School of Public Health to change this harsh reality??????

    RESPONSE TO COMMENT ON
    Grunberger “Insulin Analogsd Are
    They Worth It? Yes!” Diabetes Care
    2014;37:1767–1770 and Davidson “Insulin
    Analogs Is There a Compelling Case
    to Use Them? No!” Diabetes Care
    2014;37:1771–1774
    Diabetes Care 2014;37:e232 | DOI: 10.2337/dc14-1643
    George Grunberger

    AND, IN THE CURRENT STATE OF AFFAIRS, IT IS
    MAINLY THE PATIENTS IN THE U.S. WHO ARE
    CARRYING THE BRUNT OF THE GLOBAL INSULIN
    COSTS AS GIUGLIANO ET AL. DOCUMENT.

    RESPONSE TO COMMENT ON
    Grunberger “Insulin Analogs Are
    They Worth It? Yes!” Diabetes Care
    2014;37:1767–1770 and Davidson “Insulin
    AnalogsdIs There a Compelling Case
    to Use Them? No!” Diabetes Care
    2014;37:1771–1774
    Diabetes Care 2014;37:e231 | DOI: 10.2337/dc14-1605
    Mayer B. Davidson

    The letter by Giugliano et al. (1) updates and provides more detail about the increasing costs of the analog insulins. Sixty randomized control trials involving 21,534 patients comparing human versus analog insulins found no differences in efficacy and only minor differences in hypoglycemia (which no doubt would have been much less if bedtime snacks had been routinely ingested) (2). The fact that the share of the insulin market for human insulins is now only 2–3% highlights the remarkable success of pharmaceutical companies in promoting their insulin analog preparations.

    COMMENT ON
    Grunberger “Insulin Analogs Are
    They Worth It? Yes!” Diabetes Care
    2014;37:1767–1770 and Davidson “Insulin
    Analogs Is There a Compelling Case to
    Use Them? No!” Diabetes Care
    2014;37:1771–1774
    Diabetes Care 2014;37:e229–e230 | DOI: 10.2337/dc14-1390
    Dario Giugliano,1 Michela Petrizzo,2
    Maria Ida Maiorino,1
    Giuseppe Bellastella,1 and
    Katherine Esposito2

    Both discussants seem worried about the rising costs of insulin preparations.

    However, both said nothing about this puzzling data: The U.S. spent $8.3 billion for insulin sales in 2011, against a global insulin market of $16.7 billion (2). According to Diabetes Report Card (3), the U.S. diabetic population was about 21 million at that time, which represents less than 6% of the global diabetic population (estimated 366 million in 2011), while costing 50% of the entire insulin world sales. This should not come as a surprise, as the glargine story is even more compelling. Glargine is one of the top 10 best-selling drugs in the world, with global sales of $6.6 billion in 2012 (4), and the estimated U.S. sales in 2013 are $5.1 billion (5). So, the U.S. diabetic population absorbs 50% of total insulin market and 75% of global glargine market.

    • “Concerned” physicians and health policy specialists are not the ones to change this. You have to have Congress do that.

  • Having to beg is being normalized. Why, in the wealthiest country on Earth, should anyone have to ask fellow citizens to make up the difference in what his insurance pays and the cost of treatment. Time is now to send insurance companies out to seek real work and let Medicare for all provide comprehensive, low-overhead admin cost healthcare to all residents.

    • I’m not sure I understand the 2nd sentance compared to the 3rd sentance. Those with insurance are already subsidizing those without. Medicare for all would be a tax burden. If you understood the economics behind a # of situations, you’d know that. Most people don’t. If they looked at other countries there is a pay for system along with the subsidized system. Those with the money will still get their better, faster care. In India, which is civilized, there is no safety net.

  • Ed, I don’t know if you were taking insulin before 1996, when Humalog was introduced, BUT have you ever considered going back to Human insulin R&N? They are not as close a fit to our needs to match the speed our digestions works at, but at least they are affordable. They can be bought at any Walmart, no prescription needed, and cost $24.88, at least the last time I looked.

    Thing is with these insulins, which are equivalent to what the human body produces (IF it works), you need to take them about 45 minutes BEFORE eating a meal, so they will be starting to work when the food hits your stomach. A bit rough, but if you really can’t afford Novolog and Lantus you can use R (Regular) and N (NPH) instead. It’s the only way to beat the predatory pricing from the insulin companies.

  • Jackie,

    You have all your insulins confused.

    Animal insulins were discontinued as human insulin usually grown in bacteria was phased in.

    Virtually all insulins are human. They have been so for over thirty years.

    Analog insulins are human insulins that have a slight change in structure so that they are not subject to patent. They are also called biosimilars. Biosimilars are a more general term and may apply to other protein based substances.

    Analog insulins usually have a slightly different performance from usual human insulin. But such changes are not clearly or necessarily better. They can be worse if they are not prescribed possibly.

    But the benefit of such tweaked insulin is moot. Companies tout these alleged improvements. But they have apparently not done the necessary studies to prove their claimed improvements. Yet, they charge far higher for these high tech insulins.

    Analog insulins have been banned or limited in some countries because of this. That includes Germany.

    Banting gave the patent for insulin to the University of Toronto so that it would not be patentable.

    But drug manufacturers eventually found ways to increase their prices.

    https://insulinnation.com/treatment/medicine-drugs/selling-lifetime-insulin

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4030087

    https://1drv.ms/b/s!AgAEn1pbwhx7zAemsCwtC2Mjfwv7

    https://1drv.ms/b/s!AgAEn1pbwhx7haMBxgINaIJcF55CDg

    https://1drv.ms/b/s!AgAEn1pbwhx7y3jrJtWLB0rLIhKF

    If a doctor knowlingly prescribes a life critical drug without checking whether the patient can afford a less expensive or affordable preparation, then why should he not be held liable for such behavior? Doctors accept gifts from companies to change their prescribing habits. They accept flattery. Should they not be held liable for that if the patient suffers? After all we spend five times as much on pharmaceutical advertising than we do on medical education.

    I hope this is clearer now. Read the associated articles for further clarification.

    I know it is confusing.

    Bohdan A. Oryshkevich, MD, MPH

  • Insulin is not a medicine meant for contributions or for charity.

    Cambridge is the home of two of the best universities in our country. They both have health policy faculties.

    In addition, neighboring Boston has three medical schools. Their doctors should be held criminally liable, if that is the case, for prescribing unaffordable biosimilar or analog insulins.

    Third, our health care system is the most expensive in the world. We can afford to do better.

    Bohdan A Oryshkevich, MD, MPH

    • Dr. Oryshkevich, of course you are correct that insulin is not meant to be the subject of charity and contributions. But for the people like the T1D patients who need it to live another day, there is no time to worry about the big picture. They need it and they need it now. Of course we have to all fight the larger situation that is behind the crisis because, of course, we can do better as a country. But this nation does not do better and is unlikely to do so anytime soon. The doctors who prescribe insulin are not at fault. I don’t know what biosimilars you are talking about, really, there’s only one for Lantus, and it’s hardly a factor in this–if anything it’s slightly cheaper than Lantus–and what you are calling unaffordable analog insulins? We haven’t used porcine insulin for a very long time. Insulin analogs are known to be better pharmacokinetically and pharmacodynamically, and there aren’t allergies to it. Not so long ago the very same analogue insulins that now bankrupt patients were affordable! It is just corporate greed that is responsible for making them unaffordable. There are NO generics of any form of insulin. Not sure why you hold doctors responsible, they are prescribing what is considered best practice for their patients. You’re putting blame in the wrong, wrong quarters. Insulin pricing is not the responsibility of the FDA, either. The agency does not control drug prices. In our screwed up system, the 3 companies that make insulin are determining price and free to do whatever they want until Congress puts limits on their power to operate in a vacuum.

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