What do Clinical Trial Cover? (Finacially)

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4/20/2014 1:12am
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Replies: 6

Hey all,

My Oncologist has suggested I try to get into a clinical trial that is a IPI+PD1 trial in phase 3. the issue I have is that closest center that is doing the trial is 4 hours away in Los Angeles. The clinic also is not covered by my HMO.

I was wondering what clinical trials cover from a financial standpoint? Do they pay for travel, hotels, Dr. apointments, the medications, etc? I know that getting the right care is the most important thing but if I am going to be out of pocket $100,000 I won't have a house to be a survivor in.

Philippians 4:13 "I can do all things through Christ who strenghtens me"

Anonymous - (4/20/2014 - 1:42am)

Usually they cover doctor appointments, the drug and all the scans or xrays that are needed.  Hotels, gas and parking I've heard you can become part of  different foundations that will help with those expenses.   It's a hard decision but you are right.  You need to get the best care.

Anonymous - (4/20/2014 - 8:51am)

Locate an American Cancer Society and ask about staying at one of their Hope Lodges.  It is similar to a Ronald McDonald House for cancer patients.

The cost of cancer treatment is staggering!

Good luck

Clinical trials pay for everything directly related to the trial itself-- biopsies, blood work, treatments, doctors,etc. They expect you (or your insurance company) to pay for "usual and customary" expenses associated with your cancer-- routine labs, scans, etc. Sometimes, of course, there is disagreement between the clinical trial and the insurance company about what is "usual and customary". It would be best to talk to your clinical trial coordinator about what, specifically, they expect your insurance company to pay for and what to do if your insurance company balks. I think that these clinical trial coordinators are pretty good at working things out one way or another so your treatment can go forward.

For travel and lodging costs, yes, you pay for that. However, many cancer treatment centers have arranged discounts with local hotels and restaurants for their patients-- check with the cancer center social worker about that. In addition to the Hope Houses already mentioned, the American Cancer Society does give small grants ($500?) to help defray travel costs. Also, the Melanoma International Foundation also gives small travel grants. They probably have information about other financial assistance, too. 

Anonymous - (4/20/2014 - 12:59pm)

Hi

 

What will be paid for depends upon the sponsor of the clinical trial. As stated in a previous post, anything usual & under customary health care, like scans is NOT paid for by the clinical trial.

When I inquired about Merck's EAP, the ONLY thing that will be paid for by Merck is the DRUG!! Everything else, doctors appt, scan, labs, etc. will be paid for by Insurance Company, if you are lucky enough to have Health Insurance and that it covers the Doctor & Medical center/facility where you would be in Merck EAP.

Good Luck,

Anonymous - (4/20/2014 - 1:08pm)

Hi

 

What will be paid for depends upon the sponsor of the clinical trial. As stated in a previous post, anything usual & under customary health care, like scans is NOT paid for by the clinical trial.

When I inquired about Merck's EAP, the ONLY thing that will be paid for by Merck is the DRUG!! Everything else, doctors appt, scan, labs, etc. will be paid for by Insurance Company, if you are lucky enough to have Health Insurance and that it covers the Doctor & Medical center/facility where you would be in Merck EAP.

Good Luck,

Hello Mixta Jones ;  every situation will have its own dynamic

my insurance company has been great over four yrs of surgeries, infusions etc. but does not participate in clinical trials

a little over a year ago I was recruited by a facility ( university ) to participate in a BristolMS anti Pd 1 trial and they found out about my insurance co.'s stance & told me I could not participate****  What??  **** stage four and you tell me I can't participate ( have already had two rounds of Ipi )  I said consider me self pay & tell me what you need from me.  Please give me a cost breakdown.

It took just over three weeks for the world famous cancer center to get back to me & tell me they needed just north of $ 150,000 cash deposited before I could begin.  This itemization listed some labs, doctor visits, scans / metrics but no time frame. I emailed them back and said " you call this a breakdown,  what I'm having is a breakdown".

The next day they had reduced the amount to $ 94,000 or so and that would provide for six months of treatment outside of the drug which BMS  would cover.  I've been in three different trials and typically you ( and your insurance if they participate )  are responsible for just about all metrics, doctors visits etc. ocurring along side the trial.  Standard of Care provisions are to your benefit  as the patient & sometimes it is a delicate dance to align scans ,  lab work to a Standard of Care schedule which by law in most states insurance must cover. Involves deft hand by caregiver, provider & code writer at facility.

Anyway ended up thinking I could go anywhere considering those costs - called Madrid, NIH,  and a couple providers listed on west coast and all were generous w /  there time & very considerate.  Opted to go w /  The Angeles Clinic ...Dr. Hamid..had trepidation as I was looking at cost of transportation from PacNorthwest, lodging etc. and what were my costs going to be??  Over the phone in my initial conversation he was very encouraging about my participating & told me not to worry about costs... then during initial consult in his office he said he first & foremost went to the drug company for coverage

Overview after first 7 plus months my out of pocket costs for medical  -  less than $ 1,400 ...Certainly less than I would have thought even after Dr. Hamid's commitment of charging the drug company first -  that is less than my share of a scan at my local cancer center if I have not met my annual maximum out of pocket.

reviewing this my drug from Merck Co.,..couple Angeles Clinic # s  310 231 2135 and 310 231 2153.. not front desk numbers but employees numbers so you will need to leave voice messages or ask for front desk -  everyone is great there and if you can get aboard you will be golden

all the best,  ciaocito,  john