Clinical Trials Bills

[JaniceR]

When my father participated in the NYP clinical trial for arsenic and ara-c the doctor told him “since it’s a clinical trial, there is no cost whatsoever to the patient; everything’s paid for.” Now he’s getting bill after bill after bill from the doctor’s and the hospital. He calls them and explains what he was told, yet he still gets bills. Is this right?

Also… does it cost money to have family members donate blood and platelets to be allocated specifically and solely for my father? We asked at the hospital and the nurse (not sure she really knows) said it cost $150 every time you donate if you want family member blood allocated just to him. Is this right? I hear so many times that family platelets and family blood works better, but to charge for this?

I appreciate any input.

Thank you!

Janice

[lynette]

Hi Janice,
My Mom received many bills from NYP. I thought my Dad would have a heart attack when he saw the cost. I know that all medications and related treatments are covered by the clinical trial grant. My parents only have Medicare and AARP–they did not have to pay a penny, although they did receive bills.
In regards to the blood, every blood bank charges a slightly different rate. $150 is the average. This covers the cost of reserving the blood for him alone. I have not read any literature to support the fact that family blood works better. Is this true??
P.S. Mom’s counts aren’t recovering this time–I’m concerned that we’ve reached the ominous 8th month.
Lynette

[uno grasshopper]

Hello Janice:

I used mostly directed donor reds and platelets. My hospital has its own blood bank (Cedar’s Sinai, in Los Angeles), and didn’t charge anything for them to donate. As a matter of fact, they paid for the donor’s parking ticket and let them watch free movies while donating (platelet donations take a long time, commonly 2 hours). And on top of that, once they donated a certain number of times, they were given free movie passes or some thank-you-token to that effect.

One benefit to directed donor blood is that you know where your blood is coming from. I know it’s not fail-safe, but it worked well for me. I had lots of problems with platelet rejection until I got directed donor platelets. I used close to 200 units of blood in the course of 19 months. Also, since O+ (which I am) is so frequently used, there was commonly a blood shortage of O+, but I rarely had trouble getting my blood because of my directed donors. As a matter of fact, during some blood shortage crises, my hospital blood bank called me and asked if it was okay for them to use some of my allocated blood for other people.

If your hospital has its own blood bank, try calling them directly to get the scoop. I hope your father’s hospital has a set up like the one I was able to use.

Regarding the medical bill, try to find all the paperwork your dad signed before he entered the trial. Hopefully there will be something on there regarding who is responsible for the payment of various aspects of the trial which you could copy and send to those sending the bills. I did not enter any trials, but I had a problem with the bill for Desferal once. The hospital arranged which company would deliver my desferal which turned out not to be covered by my insurance. They kept sending me a bill for $8,000 to which I told them that the hospital made the arrangements to deliver my desferal, not I. They should have called and chosen the provider which was covered since my insurance provider was written on all the paperwork. Why would I use a company which was not covered if my insurance provider covered desferal completely from other companies? Basically, the mistake was clearly not mine, so they finally stopped bugging me.

Take care!

Marla

[lucym]

Janice,
We have been directly donating platlets to my Mom for about a month now. At the NY Blood Center in Elmsford, NY (Westchester County) and they do not charge for directed donor platelets. We are going to start directly donating blood soon, I was told there is usually a fee I believe it was about $150.00 but then I was told because my family has ran 2 blood drives in the last 6 months (collecting over 90 units of blood)and are planning another one for the fall that we would not be charged. You should try to connect with someone at the blood bank that your Dad’s doctor uses and see if you can work something out. Having a blood drive is not that hard just a little time. My Mom has a lot of friends and family and they were all looking for a way to help so we booked the local Eagles Hall and called/emailed and people just showed up.
As far as family platlets helping, my Mom in hospital could not get above 10 and she was being tx every day. After my brother donated she went to 67, she went 2 days with out a transfusion, so now that she is out of the hospital we take turns donating once a week and she has an HLA matched donor who is donating weekly (very nice thing for a stranger to do) and she gets tx on Tues and Fri (although today her plt count was 15 so we are holding off until tomorrow.) Sorry for rambling, hopfully some of it helped.
Lucy

[JaniceR]

Lynette: Did you just throw the bills out and not worry about it? Sorry to hear about your mom’s counts, I think about the two of you often.

Lucy: Is your mom doing okay on the decitabine… no adverse side affects? Is it just her platelets that she needs to get twice a week? How often does she get blood? Anyway, thanks for the useful info.

Marla: Thank you… I will check into that! How are you doing now?

[uno grasshopper]

Hi Janice:

I’m doing fine, thx for asking. Last July 6 was my 5 year anniversary since my last blood transfusion. I’ve also finished 2 years of monthly phlebotomies to reduce my iron overload from all those red blood transfusions. So, things have been slowly moving back in the right direction. Reds and whites have been back to normal ranges, only plts still lagging at 118K, but very livable.

Take care!

Marla

P.S. My diagnosis was aplastic anemia, not MDS.

[lynette]

Janice,
Dad spoke w/ billing Dept. They in turn charged Medicare directly.
Regards,
Lynette

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