Colleen Tuite sits at her kitchen table and prepares her son's blood-factor infusion on Feb. 23, 2018. Credit: Heidi de Marco | TNS

It is no secret that health care costs continue to rise, with premiums rising 58 percent since 2006, according to Kaiser Family Foundation. But what many may be surprised to learn is that increases in out-of-pocket costs, such as deductibles, co-insurance and higher specialty pharmacy tiers, have outpaced premium increases, a result of tactics used by health plans and their pharmacy benefit managers.

These tactics involve shifting costs to patients, a move that health plans and benefit managers say will create better health care consumers by encouraging them to look for the lowest cost treatment options. Cost shifting usually takes the form of high deductible health plans, co-insurance and high-tiered formulary placement for life-saving specialty medications.

If this isn’t bad enough, now they’re doubling down and squeezing patients even more. Their new tactics, called accumulator adjustments, allow patients to use copay assistance offered by specialty drug manufacturers, but will no longer count it toward meeting their high deductibles and other out-of-pocket expenditures, negating the benefit these programs were established to provide.

So, for many, their only means available to access their life-saving treatments is at risk. Scary? Yes. Surprising? Sadly, no.

High deductible health plans not only require patients to meet their entire deductible, but also any co-insurance and copays until the member meets his or her maximum out of pocket before the plan picks up the tab. For reference, under the Affordable Care Act, the maximum annual out of pocket in 2018 is $7,350 per person or $14,700 per family.

Let’s work through the following example.

You have a $6,000 deductible. Your monthly life-saving medications cost $10,000. There is manufacturer assistance available, up to $18,000 annually. In January, you could use the assistance to pay the $6,000 deductible, triggering the insurer to begin paying. This would repeat through March, at which time the $18,000 assistance is exhausted, and the new program resets accumulated out-of-pocket costs to reflect only the amount you paid. At this point, you are left with the egregious high deductible and out-of-pocket requirements, with no assistance to help access life-saving treatments.

A one-size-fits-all approach to save money simply doesn’t work. And there’s no greater example of why than with the patients who I represent — those living with hemophilia.

Hemophilia is an inherited genetic condition that only affects about 1 out of 10,000 people. Hemophiliacs lack the ability to make one or more of the blood proteins involved in the clotting process. Without treatment, they bleed internally, sometimes as a result of trauma but also simply as a result of everyday activities. This bleeding can lead to severe joint damage and permanent disability, or even death.

Hemophilia cannot be cured, but it can be controlled thanks to a specialty drug that patients take prophylactically, on demand through intravenous infusions or both. But a single treatment typically costs thousands of dollars, and individuals often require multiple treatments a week, if not daily. There is no way to incentivize hemophilia patients to use a less expensive treatment, because there are no cheaper generic treatments available. The same goes for several other chronic diseases. And, in many cases, even when there is a generic available, patients have tried those, and they don’t work.

Copayment assistance programs don’t increase the demand for clotting factor drugs or drive hemophilia patients toward more expensive therapies. The medical need for clotting factor drugs is undeniable. These programs make it possible for patients to adhere to their doctor-prescribed course of treatment, and help patients avoid the painful, potentially disabling and costly complications of not adhering to treatment. Assistance programs provide an essential lifeline to the hemophilia community and many other chronic disease patients.

Richard Pezzillo is the executive director of the New England Hemophilia Association, which assists and advocates for patients with a bleeding disorder across New England.

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