Advocacy: Ins. Coverage of Health Care Costs for Clinical Trials?

[Guest guest]

Greetings,

Please read 's story and respond to her question.

Importantly, if you have a story to tell about your insurance company (and

related State Policy) being an obtacle to participating in a clinical trial we

think that putting it in writing could be very helpful to convincing legislators

of the need to change Federal or individual State policies.

We can post your stories on lymphomation.org with an alias to protect your

privacy. We can also help you to direct your signed story to the key

legislators.

Thank you.

~ Karl

==

Hi All-

An area of advocacy that I am working on is mandated standard care during

clinical trials in the State of Oregon. Standard care is the routine visits,

monitoring and labs that are REQUIRED regardless of participation in a trial or

not. I would like your help in providing me with more personal stories about

challenges that you - or those you know - are facing regarding insurance issues

and clinical trials.

I was very excited about the opportunity for the MyVax trial (vaccine for CLL),

but was denied coverage by both of my insurance companies. It nearly bounced me

out of the trial. However I persisted and convinced the trial coordinator that

my insurance had reassured me (both of them) that standard care WOULD be covered

during the trial. However, both insurance companies refused to put this in

writing, and my trial site has required me to sign for personal payment with

each " standard care " visit. Of course I have my retirement account, and figured

I may not need it anyway....

In 23 states standard care is mandated

(http://www.lymphomation.org/clinical-trials-state-coverage.htm ), but Oregon is

not one of them. I teach ethics at the University level and I find it very

unsettling that an insurance company gets a windfall (unearned profits) just

because I have entered a clinical trial and they save on my required level of

care (at my expense). I would like to see that changed. There is a federal

effort underway by Senator Pryce (Ohio) to propose a federal mandate, but it

doesn't seem to be gaining much traction. I think we need to accomplish this

state to state.

QUESTION: Has insurance been an issue for your participation (or

non-participation) in a clinical trial???? Especially if from Oregon? Would

your please share your story with me? e101@....

Thanks!

--

Eichelberger

Dx. CLL/SLL 2005, age 46

MyVax, currently enrolled, on #11

" Peace begins with a smile. " ~Mother