Lawmakers should protect people being hurt by the practices of health insurance companies

By Chris Templin

As someone who has had hemophilia B since I was born, and who has a daughter who has it, too, I’m pretty savvy at navigating the healthcare system. And, from my experience it’s clear that health insurers and their pharmacy benefit managers (PBMs) have figured out various ways to discriminate against those who cost them a lot.

Hemophilia B is a rare genetic blood clotting disease that only 6000 other people in the country have. It can be fatal without immediate treatment of replacement factor 9 therapy. A simple bleed can cause permanent injuries or death. Because of that I have to do infusions three times a week on a prophylactic basis.

While expensive, there are no alternatives for orphan drugs, like those used to treat our condition.

The tactics the insurance industry and their PBMs have taken to keep folks like me from following the doctor’s orders to treat one’s bleeding disorders, span claims denials to an exorbitant amount of paperwork to prove you still have a rare genetic orphan condition that you were born with and will still have until you take your dying breath. Insurance representatives even came into my house to inspect the premises for ostensibly huge stockpiles of clotting factor. They didn’t find any.

Every month when I go to the pharmacy it requires a multi-step process to pick up my medicine. The pharmacist ends up having to give it to me “on loan” because the insurance approval takes a long time. That means I have to take the medicine on good faith because if the insurer says no, it’s too late for me. I’ve already had to take it and have run the risk of having to pay for it out of pocket. I feel like a puppet sometimes with people who aren’t even qualified, yanking me this way and that, making life and death decisions for me. They are bean counters who don’t know the various medical conditions and who follow formularies established by insurers and PBMs that don’t always act in the patient’s favor.

I live in constant fear because I know my health insurer would do anything to get me off their books. I think about it every day. At night I have nightmares. It’s mentally and emotionally exhausting. Instead of this disease killing me, I’ll more likely die due an overdose of pain medication and/or suicide from the stress my insurer puts me through.

As the governor said in his State of the State address, PBMs have made record profits on the backs of Pennsylvanians like me. And I’m hardly alone. The way PBMs operate needs to be reformed. There’s a bill pending at the capitol that would do just that. SB1000 seeks to shine a light on PBMs, hold them accountable and make their practices more transparent.

Among other things, the bill would also prohibit something called “patient steering” where a PBM directs the patient to use a preferred pharmacy, over which the PBM has financial controls.

The nefarious practices don’t end there. I know patients who have been victimized by something called a co-pay accumulator program. This is when the insurer and PBM take financial assistance, given to the patient, for themselves.

What do I mean?

Patients are often given copay assistance from drug manufacturers, patient groups or other third parties. That copay assistance is meant to offset the high out-of-pocket cost burden that insurers place on patients. This financial assistance used to count towards a patient’s deductible or maximum out-of-pocket costs. But now insurers and PBMs aren’t doing that. They’re taking the assistance and still forcing the patient to meet their deductibles and maximum costs. If that sounds like the insurers and their PBMs are getting paid twice, you’re right. They are. And that’s immoral.

Luckily, here too, there’s a bill at the capitol that will come to the rescue. SB 372 would ban insurers from using copay accumulator programs, something that 19 other states, Washington D.C., and Puerto Rico have already done.

The Constitution and Bill of Rights of the United States of America grant the citizens of the United States certain rights. Every citizen has the right to pursue life, liberty, and happiness. Unfortunately for me, and the many folks living with bleeding disorders, our rights are being stolen by the health insurance companies ,and our state and federal elected lawmakers need to work together to end it once and for all.

These two bills are pro-patient and have the potential to help thousands of people across the state. It’s my hope that legislators do the right thing and pass them.

My medicine is the be alive and smell the coffee drug, be a husband to my wife drug, be a father to my son drug, a protector of my daughter drug.

It’s time to stop insurers and PBMs from playing games with people’s lives.

Chris Templin is a patient living with Hemophilia B and a caregiver in Birdsboro, Pa.