I am not sure how many members here will read this thread or how many people in this forum using marijuana for medical purpose. But I am pretty sure the story that I am about to share isn’t that uncommon. If you or someone you know face a similar issue, maybe my story can help resolve issues quickly.
Some of the members here know my husband is sick with terminal cancer. It starts as a noncancerous pituitary tumor in 1999. When our guard was down, his tumor spread to bones. In 2017, he was diagnosed with “metastasis prolactinoma”, stage 4 and given 4-6 months to live. So far, he had 5 brain surgeries, 28 treatment of proton therapy, Gamma knife, 10 sessions of radiation x 3 times, Chemo Therapy and immunotherapy.
His cancer is so rare, they are only about 5 known reported cases in the worldwide and all those documented patients died within 2 years, thus no recorded treatment available. This is bad news for someone who has these types of cancer (rare kind). Because of no known/documented treatment, insurance company pretty much denies every treatment doctor suggest by putting the treatment under the “experimental” category. Also, there is no ‘study group’ available since not many patients have this disease. They wouldn’t spend money to save just a handful of people when they can spend money to study and treat more widely known illness. So, what people like we have to do? Pretty much left the individual to take care of themselves. Like Immunotherapy my husband received, insurance would not authorize the therapy, so we had to pay for it. It’s was approx 13,000.00 per every 3 weeks. Insurance paid for doctor’s visit and administering IV, etc. but not the drug cost. Well, my husband’s case, after 9 months, we had to stop since cancer spread more (determined that immunotherapy didn’t work).
Anyway, here is what I really want to share with the members of this forum.
Last year, he was really sick and hospitalized over a week. After he got discharged from the hospital, his oncologist ordered the pet scan and gene test (blood test - AKA Tempus Lab). Doctor’s office gave us the order for it and we didn’t think about anything other than follow through. This is the beginning of the nightmare! BCBS denied both services (the Pet Scan $8865.00 and Tempus Lab $6140.00) and wouldn’t pay for the bill. The Pet Scan was denied as medically unnecessary.
Tempus Lab test was denied under “experimental”. Are they kidding me? Denied the Pet Scan? Not only that, the Pet Scan was $10,360.00 but the insurance pays the partical payment on some parts of the scan and the rest were denied. It’s like hospital needs to attach the arms but the insurance company only authorize right arm to be attached, but they say the patient does not need the left arm, thus they are going to deny the payment on the left arm to be attached. It’s ridiculous!. After back and forth between the hospital and BCBS, everyone passing the buck, we had to go through the appeal process. first, Internal appeal process got denied and we had to go through the external appeal process. Again, external appeal got denied so no more options left for us but to pay the bill. As a patient, we don’t know if it is medically necessary or procedures that the doctor ordered is experimental or not. Also, before these procedures, the hospital/doctor’s office got precertification for the procedures also. ** Note: Precertification doesn’t mean the guarantee payment by the insurance
Anyway, long story short, my husband and I have too many things to worry about so my daughter volunteer to fight for the bills. She knows medical billing very well (she is in the field) and she knows how to dig and get the right information (what really was the reason that health insurance denied the Pet Scan), etc. And she found out it was the doctor who put the wrong procedure code when the hospital bill for the pet scan. After 11 months of digging, filing appeals, countless phone calls to the billing department and the insurance, even though it was the hospital’s fault, to begin with (putting the wrong code on billing), the balance is ultimately the patient’s responsibility.
My daughter said this is not right and cancer patient shouldn’t have to deal with this nonsense. So, she gathered over 2000+ pages of medical records and wrote a letter and reaches out to The Office of State Attorney General and courtesy copy to BBB, BCBS, Hospital, Oncologist, NBC, CBS.
Yesterday, we received the confirmation from the hospital that they have written off the balance of $15,000.00 and we no longer owe the hospital for these 2 bills that denied by BCBS.
The hospital knew they goofed on this and they don’t want the negative publication. They knew the Office of the Attorney General is involved and news media was notified also. That was the only reason that they wrote the balance off. We were fighting with this over 11 months and the hospital wrote the balance off less than a week after they received the courtesy copy sent to the Office of the Attorney General. Unbelievable!
So, what have I learned from this ordeal and if you are in a similar situation?
- The pre-cert must be done before the procedure.
- know that insurance confirmed the pre-cert for the procedure doesn’t mean guarantee payment from the insurance company.
- Keep eye on a letter from the insurance company. - Read and understand what they are saying. The insurance company sending you (patient) CC but when it comes to money, you (patient) will be paying for the price. - if you get the letter from the insurance, call them and ask what you (patient) need to do. Make sure to ask for the reference number for the conversation and make a note for yourself what the reference number means to you.
- If the insurance company denied the payment, you have certain days to appeal. Make sure to send an appeal.
- When all failed and if you know you are right, get your local government involved. (The office of the Attorney General) They have a department handles Protecting Consumers Health Care Bureau
- CC to Hospitals, Doctor’s office - all involved parties.
His oncologist gave up on treating him in May, so he has not received any treatment past 4 months. I have been searching for a new doctor and because my husband has rare cancer, finding a doctor who specialized for these types of cancer nearby is very hard. The good news is, last week, I found a new oncologist. My husband already exceeds the recorded survival rate and he is still doing well. He is only on RSO currently and still doing OK.
