It is no secret that healthcare costs continue to rise, with premium increases topping 58 percent since 2006, according to the Kaiser Family Foundation; but what may be surprising to lawmakers in Hartford is that patient out-of-pocket costs, such as deductibles, co-insurance and higher specialty pharmacy tiers have outpaced premium increases by four times, which speaks directly to tactics being taken by health plans and their pharmacy benefit managers.

These tactics involve cost shifting to patients, with the excuse that doing so should, in part, create better healthcare consumers.  These redesigned plans typically take 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.  This time with patient copay assistance programs. This new tactic allows patients to use manufacturer copay assistance, but it will no longer count towards meeting their high deductibles and out-of-pocket expenditures, negating the benefit these programs were established to provide.

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

High deductible health plans require patients to meet their entire deductible before the plan will contribute a dime.  Once the deductible is met, many plans also require patients to pay co-insurance – often much higher than a set co-pay – until the member meets his/her maximum out of pocket, before the plan would then begin to pick up the tab.   For reference, the Affordable Care Act maximum annual out-of-pocket in 2018 is $7,150 per person; $14,300 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, which would then trigger the insurer to begin paying.

With these new accumulator adjustment programs, the insurer would not allow the assistance to help the member meet their deductible, so by end of month three, when the assistance was exhausted, the member is still accountable for the entire deductible.

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 that 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 sometimes 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 medication (“clotting factor”), a specialty drug that patients take prophylactically and/or on demand through intravenous infusions. But, a single treatment typically costs thousands of dollars, and individuals often require multiple treatments each week, if not daily. There is no way to incentivize hemophilia patients to use a less expensive treatment, because there are no cheaper treatments – there are no generics 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.

Co-payment programs don’t increase the demand for clotting factor, or drive hemophilia patients toward more expensive therapies.  The medical need for clotting factor is undeniable.  Copayment 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 non-adherence. Copayment 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 (NEHA), which assists and advocates for patients with a bleeding disorder across New England.


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