AUBURN — When someone has hemophilia – or any chronic disease – the stakes are high. Having access to the best medication determines a whole host of things, such as whether you’ll be able to manage the disease, whether you can live a productive life, how long you’ll live, whether you can continue a career or whether it’s safe to go to school. You live with a lot of uncertainty.

Unfortunately, that uncertainty is exacerbated by how our insurance system works. Patients so often struggle to get affordable access to the care they need. There is a middleman you’ve likely never heard of who plays a big role in all of this: pharmacy benefit managers.

Pharmacy benefit managers are the middlemen between drug manufacturers, insurance companies and consumers. They negotiate discounts from the drug companies, then tell insurers which drugs to cover on their plans, and then tell pharmacists how much to charge.

The big problem is pharmacy benefit managers don’t pass along that discounted price to us – the patients. They keep those savings for themselves. It’s called a “clawback,” in that they take back the savings for themselves.

And now, pharmacy benefit managers have begun to institute another harmful policy that we should all be concerned about. It’s called an “accumulator adjustment program,” and here’s how it works. For patients with chronic diseases, medicines can be expensive. Drug manufacturers often offer co-pay assistance cards to help offset that expense for the patient until his or her deductible is met and insurance kicks in, leaving the patient to pay a set co-pay on the medicine.

Pharmacy benefit managers now say patients can use that assistance, but it won’t count toward their deductible. So, in the end, patients are still on the hook for the full cost of the drug, and the pharmacy benefit manager gets both the co-pay assistance dollars and the dollars from the patient. They double-dip. It’s abhorrent, and not how co-pay assistance is supposed to work.

Hemophilia is an inherited genetic disease that affects roughly 1 in 5,000 males. Women are also affected, and many others have other bleeding disorders. People who have hemophilia aren’t able to make the blood proteins necessary to clot. Consequently, without their medication, they are at risk of disability or death.

Hemophilia is incurable but, thanks to scientific innovation, there are drugs that can control it. They’re expensive, as many specialty drugs are. But it’s not like there’s a choice. Without the medication, people die.

Having a bleeding disorder, financially, is like budgeting the cost of a car accident into our plan every year. The last thing patients, or parents of patients, need is to feel like they have to battle the insurance company to make ends meet. They’re just trying to stay on track. This new policy will cause many to simply forgo their medications or spread it out to last longer, very likely landing them back at their doctor’s office or in the hospital or worse.

Pharmacy benefit managers are unregulated, which is why they’ve been able to operate in the dark, evading scrutiny while amassing a lot of power and holding patients hostage to their greed.

In fact, Gordon Smith, then executive vice president of the Maine Medical Association, told the Portland Press Herald last summer: “The increasing influence of (pharmacy benefit managers) is troubling. The money has trumped good public policy.”

And good policy – or the lack thereof – is what this is all about. Lawmakers must ask themselves, “When is loss of access – the real cost to patients – going to be included in the calculations?” and “What can we do to help?”

The federal government and states across the country are starting to act, requiring more transparency from pharmacy benefit managers, including disclosing the rebates they get from drug manufacturers.

Patients across Maine don’t want their diseases to define them, and they’re asking to be heard. Lawmakers need to listen and reform the way pharmacy benefit managers operate. It seems like a small ask, but for so many, the result will be huge.

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