In the trenches - clinical trial participation

Hello,

I'm offering the email thread below in the hopes that it might help another family who is or may participate in a clinical trial. In participation, there is not a lot that you are a parent can control, but if you think the company running the trial is making decisions that are making things harder for your son, you need to push back. Sometimes, as you'll see in the thread below, it works. Don't be afraid to stand up for your kids and what you think they need.

I've replaced names of people involved in parenthesis just for anonymity. Read from the bottom up to get the flow of the exchange.

Best,

Mindy

 

Hi Mindy,

Sorry,  I did not have the complete understanding about the Nov 7th long visit appointment which is why I requested from (trial coordinator) more detailed information.

Given the appointment scenario which includes aphysiotherapy assessment on one day and then a muscle biopsy the following day, I can make arrangements at a hotel for you to check in Nov 6th and check out Nov 9th as (drug company) will approve 3 nights.  

If you can advise what flight times you would prefer.

Thank you,

(coordinator for drug company)


 

From: Mindy Leffler [mailto:mindy_lef@hotmail.com] Sent: Thursday, October 11, 2012 1:26 PM To:  Subject: RE: Oct 31 and Nov 7th Flights

OK, so when we get kicked out of recovery an hour after he comes out of general anesthesia, we should just cart him to the airport and have him sit in the lounge until an afternoon flight? That is the official instructions from (drug company) on what we are to do?


From:

To: mindy_lef@hotmail.com

Subject: RE: Oct 31 and Nov 7th Flights Date: Thu, 11 Oct 2012 17:22:17 +0000

Hi Mindy,

I emailed (trial coordinator) to find out more about the long visit and she has advised the following:

Nov. 7th is a long visits with physiotherapy assessment as well. Per contract they can arrive on Nov. 6th for their Nov. 7th visit. They have to be at the hospital by 9:30 am on Nov. 7th. I am not sure if Mindy wants to fly in the day before or the day of.

Aidan will have surgery on Nov. 8th most likely in the morning however, I will not have the exact time until the day before so it would be safe to book an afternoon flight back home.

(drug company coordinator)


 

From: Mindy Leffler [mailto:mindy_lef@hotmail.com] Sent: Thursday, October 11, 2012 12:31 PM To:

Subject: RE: Oct 31 and Nov 7th Flights

Well, we have to be at the hospital on the 7th and the 8th. He has surgery the morning of the 8th. I would like written instructions from them about what we are supposed to do with Aidan when he gets out of surgery on the 8th if they're not paying for a hotel room. What are our instructions for what we are supposed to do? I don't think the airlines will let us get on a flight so soon after surgery.


From:

To: mindy_lef@hotmail.com Subject: RE: Oct 31 and Nov 7th Flights Date: Thu, 11 Oct 2012 14:39:14 +0000

Hi Mindy,

For the long visit in November (drug company) is paying for a hotel room for one night.  I need to know for which day you require the hotel room.

Thank you,

(drug company coordinator)


 

From: Mindy Leffler [mailto:mindy_lef@hotmail.com] Sent: Thursday, October 11, 2012 10:35 AM To: Subject: RE: Oct 31 and Nov 7th Flights

We're not sure yet.

I'm assuming that (drug company) will not pay for a hotel room after Aidan's surgery? If that is the case, can you ask them if they have a suggestion of where I should take him after he comes out of general anesthesia? They will kick us out of recovery around 1 hour after surgery.


From:

To: mindy_lef@hotmail.com Subject: Oct 31 and Nov 7th Flights Date: Wed, 10 Oct 2012 19:30:43 +0000

Hi Mindy,

If you can advise on flights and who will be travelling with  Aidan for Oct 31st and the long visit on Nov 7th.  

Please advise if you will require a hotel room on Nov 6th.

Thank you,


(drug company coordinator)


Views: 405

Reply to This

Replies to This Discussion

I still can't believe how many issues y'all have had with this trial. Our doctors always wanted to see Sam the day after biopsies. There was no way they'd have let us leave the country the same day.

Mindy, that is horrific. And this coming from a company making billions in profit??? It makes me sick just reading that tread, how much money are they saving by not allowing these kids to be in the hotel more than one night, just ridiculous.

Reply to Discussion

RSS

Need help using this community site? Visit Ning's Help Page.

Members

Events

© 2019   Created by PPMD.   Powered by

Badges  |  Report an Issue  |  Privacy Policy  |  Terms of Service