“My husband and I could be fucked!”
So says Barry, 55, a leadership development executive in San Francisco diagnosed with HIV in 1999. You see, like many people with HIV and other chronic diseases requiring expensive meds, Barry and his husband both rely on pharma assistance cards to pay the copays on their HIV meds. And like many health plans, theirs has a tucked-away, not-loudly-advertised fiscal perk to patients: With their copay assistance cards, they basically pay nothing for their meds. But the real (sticker) price of those pricey meds is applied to their plans’ deductible (what you must pay out of pocket before benefits kick in), which is a whopping $3,500 each.
The sticker price of their meds is so steep that basically one fill covers their deductible. That’s a good thing for them.
Now comes the “fucked” part: In early May, the Trump administration’s Health and Human Services (HHS) agency finalized a rule saying officially that insurers do not have to count prescription sticker-price dollars toward patients’ deductible. That means that, going forward—with the exception of four states (AZ, WV, IL, and VA) that basically make insurers count those dollars toward copays—the HHS has said with finality that the decision to do this is up to insurance plans. There is no federal mandate.
What that would mean for patients who rely on those fills counting toward their deductibles, should insurers take the pass offered by HHS, is that not only would those patients be on the hook for their own deductibles—but that, when they reach their max on their copay cards, if they haven’t yet met their deductible, they’re also on the hook for whatever their share of the cost of those meds is until they do hit their deductible.
If that sounds confusing, the simple takeaway is that countless patients nationwide who currently pay nothing for their meds could end up having to shell out hundreds if not thousands of dollars for them.
The rule comes at an especially bad time. “Before the coronavirus, people already had difficulties paying their deductibles and cost-sharing,” says Carl Schmid, who heads the HIV + Hepatitis Policy Institute, one of many groups lamenting the new HHS rule. “Now, with people losing jobs and income, it’s just going to make things harder.”
That new hardship could certainly end up applying to Barry and his husband. “There’s a potential additional $7,000 that’s got to come out of our own pocket,” says Barry, “if our insurer decides to take advantage of this pass that the Trump administration is giving them.”
And that’s where this gets tricky. Because of the countless insurance plans out there—both employer-linked and those on the Obamacare (Affordable Care Act) exchange, and varying wildly in their fine print state by state, even within companies—it’s impossible to compile a definitive list of which ones currently count those dollars toward deductibles and which don’t (those who use what’s called a “copay accumulator” tracker), or which ones plan to change their policy given the HHS pass.
According to Stephanie Hengst at Washington, D.C.’s The AIDS Institute, insurers who currently don’t count dollars toward deductibles include Ambetter, BlueCross Blue Shield, CareSource (IN, OH), Molina, and Oscar (CA, FL, GA). Those who count dollars toward deductibles only when there is no generic equivalent of the drug available include Ambetter (IL), Bright Health, CareFirst, CareSource (GA) and Healthfirst. And those who currently do count dollars toward deductibles include CareSource (KY), Cigna, Kaiser, and Oscar (OH).
But she notes, again, that insurer policies are not uniform across states—and she also predicts that, given the pass by HHS, many insurers that currently do count dollars toward deductibles will soon stop doing so.
Worried? Start Asking Questions Now
So if that’s your insurer—or if it’s soon to be your insurer—what should you do about it? According to Schmid, those with employer-linked plans should contact their job management or Human Resources department immediately, raise this issue, and ask them to pressure the insurer to not do this, perhaps even threatening to switch plans.
That advice is echoed by Ben Chandhok at the Arthritis Foundation, one of the many groups, with the AIDS Institute and with Schmid’s, that are part of the All Copays Count Coalition in support of dollars-toward-deductibles. “It’s entirely possible that your employer chose your plan not knowing about this issue,” he says, “and unless you tell them, they may not make a plan change in the future.”
Schmid notes yet another avenue of recourse: Many drug companies offer their drugs totally free to patients who qualify, which might include those who can no longer afford their drugs if insurers yank away dollars-toward-deductibles.
Those on an Obamacare exchange plan can switch plans as soon as they’re able to, he adds. But the rub is that your new plan might turn around and do the same thing, having been given a pass to do so by HHS. Dollars-toward-deductibles is not something that plans generally advertise, meaning that you might have to call several plans to extract this information from them. (Short cut? When perusing plan policies, do a control-F search for “copay accumulator” or “copay accumulator adjustment.” And know that a plan having a “copay accumulator” policy generally means not counting dollars toward deductibles, as much as it may seem to mean the reverse.)
On the broader advocacy level, you may also live in one of the 17 states with bills pending (some of those bills fast asleep during our COVID pause) that would ban insurers from not counting dollars toward deductibles. Those states are MA, CT, NY, PA, MD, NC, GA, FL, OH, KY, IN, WI, MN, IA, LA, OK, and NB. According to Chandhok, if you live in one of those states, it’s a good idea to call your lawmakers “and say ‘Please don’t give up on this bill!’”
“If the bill can’t move forward this legislative session” because of COVID, says Chandhok, “at very least, it puts on the radar that you care about it when 2021 comes around. Legislators don’t know this is a big issue unless you call and tell them.”
Meanwhile, Barry adds that he’s certainly not going to alert his insurer to the new pass from HHS (and nor should you if your plan currently counts dollars toward deductibles). He’s hoping that, even if they’re hip to the new HHS rule, they’ll keep doing right by dollar-strapped patients out of the goodness of their heart.
But will they? Will any plan? We’ll see. But it’s important to know the lay of the land should this happen to you in your plan, so you at least know what steps you can take going forward.