Jordan Green of Texas has Multiple Sclerosis (MS) and takes Aubagio, a Disease Modifying Drug (DMD) for MS. DMDs impact diseases in ways that may not be easy to see. In Jordan’s case, Aubagio doesn’t make his day to day symptoms of MS better, it makes relapses less frequent. Fewer relapses means a better overall quality of life. Genzyme (the maker of Aubagio) has a robust Patient Assistance Program that helps patients like Jordan receive the medications they need.
WHY WE NEED PATIENT ASSISTANCE AT ALL
Patient Assistance Programs exist because many drugs are unaffordable to patients. The reason most patients can’t afford life-altering drugs is not as straightforward as it may seem.
One reason drug costs are so high is that drug companies charge a lot for their drugs. Then again, drug companies do extensive research and development – work that takes time and money. That work turns into therapies like Jordan’s that improve his quality of life by reducing the frequency of relapses of his multiple sclerosis.
On other hand, insurers and Pharmacy Benefit Managers (PBMs) also influence patient costs. They can elect not to put a drug on their formulary, leaving 100% of the cost in the hands of the patient. They can increase the copayments for drugs by moving them into higher “tiers” – the higher the tier the more expensive the drug. Even when patient assistance from a manufacturer helps a patient afford their drug, insurers can apply something called a copay accumulator to make the patient pay anyway. But insurers don’t make life changing therapies. They don’t make anything.
The bottom line is that patients are shelling out more and more money for needed treatments. Patient Assistance Programs (PAPs) allow patients to afford the drugs that insurers and PBMs don’t.
COVERED, THEN NOT COVERED
In 2017 Jordan’s insurance did not cover his Aubagio at all. Genzyme covered the complete cost of the drug through their One Start program. In 2018, his insurance agreed to accept payment for the drug directly from Genzyme. That money went towards his deductible and once it was satisfied his insurer took over paying the cost, as per his plan.
Then, in 2019 the premium on Jordan’s insurance jumped to an absurd $1500 a month! He couldn’t afford that. Jordan contacted his internist who recommended him to a broker who could help in obtaining his new coverage.
BUYER BEWARE
Buying healthcare can be overwhelming. That’s why insurance brokers exist.
The broker Jordan’s doctor recommended found him a Blue Cross Blue Shield of Texas (BCBSTX) Bronze-level plan (Blue Advantage HMO) for “only” $570 a month. Cheaper, yes, but hardly cheap. The plan came with a $7900 deductible.
Jordan continued on his Aubagio. The Genzyme Patient Assistance Program was paying for the drug through a copay coupon. In his first month on the plan Jordan had met his full deductible (as per BCBSTX online patient portal) because the copay coupon from Genzyme paid BCBSTX for the expensive drug directly. All seemed to be going fine.
COPAY ACCUMULATORS
One month later (February of 2019) Jordan checked the BCBSTX online and found that the information about his deductible had been changed. Rather than having satisfied his deductible it said he’d only paid $90 towards it.
Huh?
This is what a copay accumulator does. It is a tool insurers and PBMs use to NOT apply drug or copay coupons towards a patient’s deductible. Money changes hands between the drug manufacturer and the insurer on behalf of the patient but that money somehow doesn’t count. The insurer then expects Jordan to pay towards his deductible separately. The insurer gets paid twice. In Jordan’s case, BCBSTX pays for no medical services whatsoever until the $7900 deductible is met, so the insurer is dodging the costs of his routine care as well.
How is this legal? In some states it isn’t legal. Insurers use complicated language to hide it.
Jordan asked me, “If I went to the pharmacy with my father and he paid my copayment for me, would that not count either?” Good question. He called BCBSTX to find out.
BLUE CROSS BLUE SHIELD OF TEXAS HAS TERRIBLE CUSTOMER SERVICE
Three phone calls, two hang-ups (by them) and numerous transfers later he got nowhere with BCBSTX. As a client, he thought he could get answers to straight forward questions, but he couldn’t.
When Jordan moved to a new home, he called BCBSTX to update his address. BCBSTX couldn’t even do that for him. Instead, he was sent to the broker who had gotten him the plan in the first place.
SHADY BROKERS and RETALIATION
Jordan called the broker who assured him the address change would be taken care of. He also asked about the change to his deductible, from ‘met in full’ to ‘not met in full’. The broker dodged the issue. This didn’t feel right to Jordan.
Things got dark when Jordan said he was going to contact the Texas Department of Insurance to file a complaint against BCBSTX. The broker warned him not to; that if he did that he would get ‘black listed’ by his insurer. He warned Jordan that if he was pushy he would get deliberately put on hold for long periods, hung up on, transferred endlessly and claims would not be paid. Jordan couldn’t believe it.
CONFUSION AND GASLIGHTING
So, together with a nurse from Genzyme’s One Start program Jordan called BCBSTX. After nearly three hours of long holds, hang-ups, transfers and incompetence they give up. Jordan had somewhat better luck with his Alliance RX, the specialty pharmacy that fills his Aubagio. They confirmed the co-pay assistance provided by Genzyme was indeed not being applied towards the deductible and explained that BCBSTX utilized a copay accumulator.
The next day, Jordan called BCBSTX, asked to speak with a Supervisor and he and the supervisor spoke with Prime Therapeutics, the pharmacy benefit managers for the plan. They told Jordan that if BCBSTX accepted the value of the coupon towards his deductible that it “wouldn’t be fair” to people who didn’t qualify for such patient assistance and that Jordan would be “double dipping”. “Fair”? Was it fair that Jordan had MS? Jordan double dipping? THEY were double dipping! Jordan just wanted to afford his medicine. They were gaslighting Jordan.
Oh, and no, AllianceRx nor Prime Therapeutics wouldn’t change his on-file address either.
LOCKED IN
Realizing how much he would have to pay ($570 a month plus a $7900 deductible = almost $15,000) before BCBSTX would provide him with any kind of benefit at all he decided to change insurance. However, the Open Enrollment period for the ACA Marketplace was long since closed. He applied for an exemption but it was not granted. The request for an enrollment exemption had to go through his current insurer (BCBSTX) and they denied it.
HAS THIS HAPPENED TO YOU?
Jordan Green of Texas has MS. He’s on a disease modifying drug that makes his quality of life better. Because he can’t afford it, the manufacturer pays the insurer directly. But the insurer insists Jordan also pay them for it. That’s the copay accumulator, that’s double dipping.
Jordan is fighting it. But he is one and small while his opponent is huge and many. Reader, maybe you are fighting it too. If you are, let us know. We can do this together.
Jim Sliney Jr. is a Registered Medical Assistant and a Columbia University trained Writer/Editor. He creates
education and advocacy materials for patient support groups. Jim has worked closely with several rare disease communities. He also collaborates with patient-writers at Patients Rising and leads their writing team. Jim is a native New Yorker where he lives with his wife and lots of cats. Connections: Twitter Email