Monday, December 5, 2011

Insurance woes with Clinical Trial NCT01217749 at OSU using PCI 32765 and Ofatumumab

It looks like a tough decision I made to take the next step in my treatment path could be undermined by the big bad insurance company and the university teaching hospital with its inflated fees.

Here is what I wrote my online friends in the CLL community. This is aggravating stuff, but not the real bad stuff. Bad stuff is crashing or skyrocketing counts and worse. This is about money and a tilted system of health insurance. What could be bad, but I am not there yet is the removal of choice, the removal of a hope. I would hate that, but I am not there yet.

Soon I will post why this is my favored course of action today, but right now I am just trying to find a way to make it a realistic possibility. This is only the beginning. The door is not shut yet. I just need the pass code. Or the route to the backdoor. Or....

Hi,

My CLL needs treatment again, and after much thought and research, my first choice is Clinical Trial NCT01217749 at OSU using PCI 32765 and Ofatumumab, BUT my insurance, ANTHEM HMO covers nothing non emergent out of state.

What I understand about the trial is that the meds are free but everything else (usual standard of care is the coy term used) would be at my expense at the wrack rate- pricy for the individual payor (unlike the insurers who often pay pennies on the dollar). Labs, doctors' visits, BMB, CT scans all would be my responsibility. Maybe over a $100,000 for the whole deal.

Do I have this right?

Any advice?

Is it possible to negotiate to get a discount rate or a flat rate for the study?
Is it possible to get the bulk of the work-up done in my home state where my only cost is the co-pay?

Any other thoughts? Insights?

It is hard enough to make a treatment decision, even it is a preliminary and tentative one.

As the old joke goes: Besides bankruptcy, what other side effects does this treatment have?

Thanks as always. I bet there is a way to make this trial happen if it should. Just another challenge. Compared to CLL, this should be easy.

On a less challenging note, I am excited to be off to ASH next week as a accredited reporter (I keep picturing Jimmy Olson at the Daily Planet). Lots of good stuff on CLL especially PC! -32765 and CAL 101 and lenalidomide. In addition to trying to save my own skin by learning the latest on CLL and transplants and ITP, I am looking to help other family docs learn more about hematology and will be videotaping interviews with several experts.

Email if you have any burning questions or thoughts on what you or a good primary care provider should know about blood disorders. I will let you know when I post the videos.

We are all in this together (well maybe not the insurance companies).

Brian

I always have the rebbe to help me:

"Life is a very narrow bridge. The important thing is not to be afraid".- Rebbe Nachman of Bratslav

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6 Comments:

Anonymous Anonymous said...

With a trial enrollment of 27, I would think some flexibility would be in order by OSU. OSU is part of the CLL Consortium along with UCSD so I am wondering if that would help doing remote workups. Perhaps Dr. Byrd could address this if you see him at ASH. Regards, TomD

December 6, 2011 at 6:41 AM  
Blogger Authentic Antenna said...

Damn. I left a msg and the system ate it. Here we go again. My dad was an insurance agent, maybe he could help answering some of your questions. Thanks for your comment... I just had to come and read about your sitch...
Lisa Guest

December 6, 2011 at 8:07 AM  
Anonymous Anonymous said...

I can so relate to this: Besides bankruptcy, what other side effects does this treatment have?

I myself staring treatment in the face wonder how to do all this a keep a business going and the health insurance in effect. But what's the benefit of having great insurance if you cannot afford the time off to get treatment.

I've delayed treatment for a year. I ponder if I can go another.

You've got much fight and determination in you Brian. I'm sure you'll find a way through the insurance mess. I'm praying you'll discover it soon so you can put your plan of action in place.

--Janet Morrison

December 6, 2011 at 8:21 AM  
Anonymous Anonymous said...

My husband is in clinical trial 10020 at OSU. We are also out of state and have a single case contract between our insurance company and OSU so that we are covered at in network rates. Dr. Byrd had to request a peer to peer reveiw with the insurance medical director to state the "need" for participation. The drug is free and all standard of care testing is covered as in network.

December 6, 2011 at 10:54 AM  
Anonymous Anonymous said...

My husband was diagnosed in November 2009 with CLL/SLL. He went through 6 months of chemo and 6 months later the cancer was back with a vengeance. He had gotten some sort of virus or infection and was hospitalized for 10 days locally until our Doctor could get him to OSU to see Dr. Bryd. He was hospitalized at OSU for another 9 days there. They did find that he has a 17p deletion and that is why his cancer is so resistant to treatment. Dr. Bryd wanted him in a trial to bridge him to pci. but his hemoglobin was to low so they gave him two units of blood and sent us back home. (4 hour drive) the next week we went back to start another trial but his platelets were to low (18,000) so they had a backup plan and the next week were back again to start the trial for 17 DMAG. Two weeks 2 treatments a week (hours on the road) the lymph nodes and spleen were Hugh and painful. Just saw Dr. Bryd two days ago and my husband has to have a month wash before he
Can start the PCI/ofatumumab trial. We go back Jan. 23 for testing and hope his counts will hold with the dexamithodone to be able to get into this trial. So far our insurance has been wonderful but with neither one of us able to work now (I am his full time caregiver and driver) his insurance will run out in march unless we can come up with some money to keep it.

January 8, 2012 at 6:30 AM  
Anonymous Anonymous said...

My husband was diagnosed in November 2009 with CLL/SLL. He went through 6 months of chemo and 6 months later the cancer was back with a vengeance. He had gotten some sort of virus or infection and was hospitalized for 10 days locally until our Doctor could get him to OSU to see Dr. Bryd. He was hospitalized at OSU for another 9 days there. They did find that he has a 17p deletion and that is why his cancer is so resistant to treatment. Dr. Bryd wanted him in a trial to bridge him to pci. but his hemoglobin was to low so they gave him two units of blood and sent us back home. (4 hour drive) the next week we went back to start another trial but his platelets were to low (18,000) so they had a backup plan and the next week were back again to start the trial for 17 DMAG. Two weeks 2 treatments a week (hours on the road) the lymph nodes and spleen were Hugh and painful. Just saw Dr. Bryd two days ago and my husband has to have a month wash before he
Can start the PCI/ofatumumab trial. We go back Jan. 23 for testing and hope his counts will hold with the dexamithodone to be able to get into this trial. So far our insurance has been wonderful but with neither one of us able to work now (I am his full time caregiver and driver) his insurance will run out in march unless we can come up with some money to keep it.

January 8, 2012 at 6:32 AM  

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