Let’s eliminate the pharmaceutical ‘gag order’ that costs patients money

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The U.S. Pain Foundation was founded back in 2003, and while we have grown to become the leading patient advocacy organization with nearly 90,000 members, we still are proud to call Connecticut home.

Some of the most important patient-focused legislation we’ve helped pass started right here, working with lawmakers and Gov. Dannel Malloy to create the nation’s first patient access law relating to step therapy.

That is why I firmly believe Connecticut lawmakers need to continue that history and proactive approach by passing a bill that will ensure patient consumers are not paying too much for their medication.

S.B.445 would put an end to an insurance industry secret—where pharmacists are contractually prohibited from telling customers if there is an option for them to pay less for their medically necessary, and sometimes life-saving, prescription treatment options.

It seems crazy but it’s true.

Here’s how it works.  Insurance companies hire a middleman—pharmacy benefit managers or PBMs— to handle their contracts with drug makers and pharmacies; this includes big chains and your local pharmacist.  The PBMs negotiate drug prices and set the levels for consumer co-pays.  But, within the contracts with those pharmacies is often a “gag order” provision that bans discussion of drug prices with the consumers.

Here’s an example.   A customer goes to the pharmacy for prescription thyroid medication.  The medication costs $5.  But, the co-pay that the person pays for their medication is $15. The pharmacist can’t tell the customer that they’d save 10 bucks if they just bought it without using their insurance, so they end up spending more.  And who gets that $10 margin? You guessed it– the PBM.

As a mother to a 7-year-old son who shares the same genetic connective tissue disorder as me, I am disheartened to learn that not all of the information is shared with us when we visit our pharmacy. On various medications myself, our family is already burdened with medical expenses ranging from hospital stays to lab testing, doctor’s visits and out-of-pocket expenses incurred when insurance denies medical claims. These health-related costs increase when there is more than one family member living with an incurable pain condition. Families like us rely on our state’s legislators and Governor to create laws that make accessing our treatments easier and financially accessible, not the other way around.

U.S. Pain Foundation’s volunteers don’t just live with chronic pain, as pain can stem from other conditions —cancer, diabetes, auto-immune diseases.  Most of our volunteers, which includes those here in Connecticut, are on multiple medications which amount to numerous co-pays.  To know that these individuals, who are working tirelessly to manage their illness, daily lives and finances are being ripped off at the hands of PBMs is sickening. What’s worse, pharmacists are banned from providing our residents with quality treatment options at an affordable price.

S.445 is sponsored by Sen. Martin Looney and Sen. Len Fasano.  These lawmakers have come together —across the aisle– to fight for the rights of the patient consumer.  The reason this reform is so critical is it impacts anyone of us who goes to fill a prescription, not just one specific patient population.  Their defense of the consumer is admirable.

S.445 would ban these “gag order” provisions found in contracts between the PBMs and pharmacies throughout Connecticut.  Pharmacists would have the freedom to tell consumers the truth about what they’re paying for—and how they might save money.  This brings the control of health outcomes back in the hands of our residents and not the insurers.

I urge Sens. Looney and Fasano to keep up the good work that’s already been done on this bill.  S. 445 passed the Senate unanimously.  Their colleagues in the House would be remiss to not do the same and to send the bill to Gov. Malloy, giving him a chance to do the right thing for Connecticut’s consumers.

Shaina Smith is Director of State Advocacy & Alliance Development for U.S. Pain Foundation, based in Middletown. Diagnosed with various pain conditions, including Ehlers-Danlos Syndrome Hypermobility Type, Shaina utilizes her journalism background to mobilize pain patient advocates and engage volunteers to participate in awareness programs.

What do you think?

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