Leslie R.’s biggest problem isn’t the fact that she’s 70, or that she’s trying to live on just Social Security and a small pension. Leslie is a type II insulin dependent diabetic, left with no savings after a battle with cancer drained her accounts due to the high cost of her medications. Now the cost of the insulin that she needs every day to control her diabetes is threatening to leave her homeless.
Leslie’s first 90-day supply of the insulin drug Lantus in 2018 was covered by her Part D plan and her co-pay was $70.00. But when it came time to order her next 90-day supply, Leslie learned that her first order had pushed her into the Medicare Part D doughnut hole coverage gap. Leslie was told the co-pay for just one 90 day supply at this stage would be $1,800. Leslie let the order go unfilled.
Leslie turned to her doctor, who gave her a few free samples of Lantus to keep her going. In the meantime, she tried ordering 4 vials of her insulin from a pharmacy in Canada, where the Lantus sells for much less. Even that wasn’t cheap. Leslie wrote to The Senior Citizens League saying:
“I’m using less Lantus than I’m supposed to. I’ve tried applying for assistance but always get turned down — probably because I’m not on the street — YET. When I retired, I had my house paid off. But due to the rising cost of living, I had to take out a loan to catch up with my bills. That’s money that has to be paid back and I’m starting to sink financially. I may have to sell my house to pay for my medication, and once that’s gone, I don’t know what will happen to me.”
How The Senior Citizen League Was Able To Help
TSCL’s Medicare policy analyst, Mary Johnson, checked Leslie’s Part D plan co-pay quote against the cost information that Medicare lists for her drug plan. Co-pay and co-insurance for Part D plans can be found on the Medicare website’s Drug Plan Finder at www.Medicare.gov. What Johnson found was perplexing. Medicare’s information for Leslie’s Part D plan listed a significantly lower co-pay for Lantus than what Leslie was quoted. Armed with this information when Leslie called her mail order pharmacy again, questioning the quote for Lantus, she learned the $1,800 was, in fact, incorrect. The correct co-pay of her 90-day supply was actually $855.88.
How widespread is the problem of misquotes of co-pays and potential overcharges? Since Medicare does not negotiate prices, it is extremely difficult for the public to be certain how much the co-pay for any particular drug might be — especially when in Medicare’s Part D coverage gap. The Senior Citizens League is looking into this question and we hope you will help by sharing any similar experiences with excessively high drug co-pays.
In researching Leslie’s case, we learned of at least two class action lawsuits that allege pharmacies and drug makers are overcharging diabetic patients for their insulin and supplies. One of the class action lawsuits was brought against Sanofi, the maker of Lantus, as well two other manufacturers of other insulin, Novo Nordisk and Eli Lilly, alleging makers of these insulin drugs have been part of an “organized scheme to drive up prices at the expense of patients who need insulin to live.” The lawsuit alleges that, between 2012 and 2017, the drug companies raised the sticker prices on their drugs by more than 150%. Some diabetic patients now pay almost $900 per month for the drugs they need, according to a press release from the law firm handling the class action lawsuit. The firm was quoted as saying that some patients have been forced to take extreme actions. Like Lesli, some diabetics have tried taking less insulin than the doctor prescribed dose. Some have even allowed themselves to slip into a diabetic ketoacidosis (when blood sugar is too high for too long), in order to obtain insulin from hospital emergency rooms.
Overcharges Affect Both You and Medicare
Leslie was lucky that the co-pay error was caught before she filled her prescription. It’s extremely difficult for the public to know when co-pay misquotes and overcharges occur. While drug plans list fixed co-pays and coinsurance amounts in the materials sent their enrollees, drug prices are not publicly disclosed. What’s more, Medicare is forbidden by law from negotiating Part D drug prices with drug companies. Instead, Part D plans or the big pharmaceutical benefit mangers that fill the prescriptions of Part D plan enrollees, negotiate prices with drug companies instead. That leads to a wide disparity in prices between Part D plans, especially for the most expensive drugs like Lantus.
A study that Johnson preformed for The Senior Citizens League in 2017 compared the prices of the top ten most-frequently prescribed brand drugs between drug plans. The study found that a monthly supply of Lantus ranged from a high of $682.00 to a low of $77.75, a difference of $604.25 per month.
The high cost of brand name drugs and overcharges, even when unintentional, can result in terrible financial hardship for patients that could lead to serious health risks. When patients reduce the amount of the drug that they require to keep them alive, complications can occur. For a person with diabetes, poorly controlled blood sugar can lead to limb amputations, blindness, nerve problems, and kidney failure, just to name a few.
Before you refill your next prescription, know your co-pay information ahead of time! This isn’t always easy. To learn what you should be paying for your prescriptions see “Make Sure You Know Your Correct Co-pay Before You Fill That Prescription!” [insert link here].
If you have been quoted a co-pay that’s significantly higher than you expected, share your story here.
What You Can Do
Please help. Congress must be held accountable for prohibiting Medicare from negotiating drug prices, and drug prices must be made clear to consumers. Be assured, unlike many other so-called advocacy organizations, The Senior Citizens League receives no funding from pharmaceutical manufacturers or drug plans — we rely entirely on donations from people like you. People like Leslie who take the time to share their stories, help to publicize how prohibiting Medicare from negotiating drug costs is a failing policy for our health and finances. Help us help you with a donation.