Action 9: Diabetes patients struggle as insulin prices rise

CHARLOTTE, N.C. — Patient Vernon Sumwalt relies on insulin to stay alive.

"If I did not take insulin, I can tell a difference.  If I'm off insulin for an hour, my blood sugar is spiking," he said.

The price is spiking too.  Every few months, Sumwalt gets a refill and a big bill.

"About a three-month supply, it's about, between $800 and $900," he said.

Sumwalt has to pay that out of pocket up to a point, then his insurance kicks in. He considers himself lucky.

"It makes me wonder how people who don't have insurance can pay for it,” Sumwalt said.

Some patients end up not paying for the drug, like Kristi Howard’s brother, David.

"He would skip his insulin every other day," she said. "He would skip just because he couldn't afford to get his insulin refilled."

She said that led to complications and David died.  He was just 38 years old.  She has diabetes too, just like her brother, but, unlike him, she has good insurance.

One problem is, while insulin's been on the market for almost 100 years, there's still no generic. People are paying for brand name drugs at brand name prices.

Medicare tracked two of the most popular insulin drugs, Lantus and Lantus Solostar, over the course of four years (2010-12014).  One went up 27 percent, the other - 41 percent.

The Health Care Cost Institute found the average cost for someone with diabetes in 2013 was $14,999 per year, while those without diabetes paid about $4,305 per year.

P&S Market Research Group estimates the insulin market will top $48 billion worldwide by 2020.

A JAMA study done in 2014 found for patients with insurance, out-of-pocket costs jumped 89 percent from 2000-2010.

Drug makers, wholesalers, pharmacy benefit managers (PBMs), insurance companies and pharmacies all have a hand in what you pay and they're constantly making deals that impact the price.  It's so complicated, the drug companies can show they aren't making any more money than they did back in 2009 but, at the same time, one of those middlemen told Action 9 investigator Jason Stoogenke, drug makers "alone" can lower the price.

Eli Lilly (Humulin R), Novo Nordisk (Levemir) and Sanofi (Lantus) make three of the most popular insulin drugs.

Eli Lilly Statement:

"Today's health care system works well for most people, but those enrolled in high-deductible insurance plans and managing chronic conditions face challenges in gaining reasonable access to the treatments they need. Insulin is one example, and we are committed to doing our part. A permanent solution that gives everyone who uses insulin access will require leadership and cooperation across many stakeholders, including manufacturers, PBMs, payers, and policymakers.”

Novo Nordisk Statement:

"We know that patients are looking for answers and we're committed to working towards a future where everyone with diabetes has the medicines they need. There are several factors affecting insulin affordability. Pharmaceutical pricing is complex as there are many intermediaries between the manufacturer and the patient and these intermediaries ultimately determine what premiums, co-pays and deductibles are charged to the patient. Rebates, discounts and administrative fees to PBMs and other intermediaries are all necessary to secure formulary access for patients. While many patients using our medicines have co-pays on average of $1 - $1.40 per day, product affordability is an emerging issue for some patients who pay more up front due to changes in the healthcare system and benefit designs implemented by PBMs/payers. Additionally, patients who obtain their insulins under government programs have nominal co-pays. We're taking action to address that many Americans with diabetes struggle to pay for their healthcare and, in some cases, this includes paying for the medicines we produce. For instance, we negotiate with payers and PBMs to have our medicines on their preferred brand tier. Our co-pay assistance programs helps reduce the burden some high deductible plans create and offer a patient assistance program to make our medicines accessible for as many eligible patients as possible. We also produce human insulin which is an affordable option for patients. The developments in treating diabetes over the last 90 years have had a profound impact on patient outcomes. Price increases are necessary to support our mission to research and develop new medicines. We're committed to continuing our research and development into new therapies and to support our ultimate goal - finding a cure for diabetes.”

Sanofi Statement:

"Sanofi is committed to helping patients get the diabetes treatment that they are prescribed, and we have not increased the price of our basal insulin since November 2014. In setting prices for our insulin medications, we work to balance helping patients manage their diabetes today and developing ways to improve care in the future."

Many blame high-deductible insurance plans. While that does impact how much patients pay, it doesn't change the fact that the companies controlling the price of insulin are charging more.

UNC Charlotte professor Jennifer Troyer is an expert on drug prices and said other countries keep them down by regulating them more.  But that tends to limit choices -- a trade-off Americans don't typically like.

"So, if cost is really the big issue, then maybe that's the way to go. But it does limit us," Troyer said. "We really value choice really heavily.  And we want our physicians to be able to make the choice for us that they feel like is most appropriate for us."

Blue Cross and Blue Shield of North Carolina CEO Brad Wilson believes the government needs to get involved more. He recently told Stoogenke the federal government should be allowed to negotiate prices for Medicare and should ban drug companies from advertising on television.

"The data is clear,” Wilson said. “When that began, the consumption of and the pricing of pharmaceuticals went up and it's been on the trajectory ever since.”

For example -- a California study says drug companies spend 19 times more on advertising than on research and development.

Short-term solutions

Channel 9 Jason Stoogenke researched several ways that patients can try and find cheaper prices and discounts on insulin.

• Pharmaceutical Assistance Programs
• Drug makers offer discounts to people who qualify.  Sanofi Patient Connection is one example.
• Eli Lilly plans to launch another insulin drug next month.  It's called Abasaglar.  It's not exactly a generic and Lilly hasn't set the price yet, but more competition could mean lower prices.
• Walmart carries an exclusive line of diabetes products, called Reli-On. Its insulin costs less than $25 for a vial, roughly six times less than the average brand. Walmart's is not for everyone, but, an insider at a competing company told Stoogenke it's every bit as good as the version his own team makes.

Other ways to be a savvy patient:

• Do your homework:  Know what drugs are out there and what discounts are available.
• Ask your insurance ahead of time what your out-of-pocket cost should be:  It may matter which drug you use.
• Ask your doctor for options:  Blue Cross said bring up the issue with your doctor.  Don't wait for him/her to raise it.

The American Diabetes Association says 29 million Americans have the disease, 195,000 in Charlotte, 1 million in NC (13 percent of the population), and 547,000 in SC (14 percent of the population).

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