Written by Chris Templin
Since I was born with hemophilia B and my daughter also has hemophilia B, I am very good at navigating the medical system. And it's clear from my experience that health insurance companies and their pharmacy benefit managers (PBMs) have come up with many ways to discriminate against high-cost patients.
Hemophilia B is a rare genetic blood clotting disease that affects only 6,000 other people in the country. Failure to receive factor 9 replacement therapy immediately can result in death. Simple bleeding can lead to permanent injury or death. Therefore, I have to administer an intravenous drip three times a week as a preventative measure.
Although expensive, there is no substitute for orphan drugs such as those used to treat diseases.
Tactics used by the insurance industry and insurance companies to prevent people like me from following doctors' orders to treat bleeding disorders range from claim denials to rare genetic orphans born at birth. This extends to the exorbitant amount of paperwork required to prove that you still have the disease. And you still have until you take your last breath. Insurance representatives would sometimes come to my house and inspect the premises for what was ostensibly a huge stockpile of clotting factors. Nothing found.
When you go to the pharmacy every month, you have to go through multiple steps to receive your medication. The pharmacist ultimately has to give it to me on “loan” because insurance approval takes time. This means you have to be honest about taking your medication because if your insurance company says no, it's too late. I already have to take it and risk having to pay money out of my pocket. I sometimes feel like I'm a puppet, pulled from place to place by people I don't even have the qualifications to decide whether I will live or die. They are trivia people who don't know about various medical conditions and follow prescriptions established by the insurance company or his PBM, which don't always work out in the patient's favor.
I live in constant fear because I know the health insurance company will do anything to take me off their books. I think about it every day. I have nightmares at night. It's mentally and emotionally draining. Instead of dying from this disease, you are more likely to die by suicide due to an overdose of painkillers or stress from your insurance company.
As the Governor said in his State of the State address, PBMs have achieved record profits because of Pennsylvanians like me. And I'm hardly alone. We need to reform the way PBMs operate. A bill is being debated at the Capitol that would do just that. SB1000 aims to shine a light on PBMs, hold them accountable, and make their practices more transparent.
Among other things, the bill would also ban what is known as “patient steering,” where a PBM directs a patient to use a preferred pharmacy over which the PBM has financial control.
The malicious behavior doesn't end there. I know patients who have been harmed by something called the Copay Accumulation Program. This is when the insurance company and her PBM take for themselves the financial assistance given to the patient.
what do you mean?
Patients often receive copayment assistance from pharmaceutical companies, patient organizations, and other third parties. This copayment assistance is intended to offset the high copayments that insurance companies impose on patients. This financial assistance previously counted toward a patient's deductible or maximum out-of-pocket costs. But currently, insurance companies and PBMs don't do that. They force patients to pay deductibles and maximum costs even though they receive assistance. It may sound like the insurance company and her PBM are getting paid twice as much as she is, and you're right. they are. And that is immoral.
Fortunately, there is a bill on Capitol Hill that can help here, too. SB 372 would prohibit insurance companies from using copay accumulation programs, which 19 other states, Washington, D.C., and Puerto Rico already have in place.
The U.S. Constitution and Bill of Rights provide certain rights to U.S. citizens. All citizens have the right to life, liberty, and the pursuit of happiness. Unfortunately for me, and for many others living with bleeding disorders, our rights are being taken away by health insurance companies, and state and federal elected officials are working hard to end this problem once and for all. We need to work together.
These two bills are pro-patient and could help thousands of people across the state. I hope legislators do the right thing and pass it.
My medicine is to live and smell the coffee, to be a husband to my wife, a father to my son, and a protector to my daughter.
It's time for insurance companies and PBMs to stop playing with people's lives.
Chris Templin has hemophilia type B and is a caregiver in Birdsboro, Pennsylvania.
