Help with costs of clinical trial

[tjmm7f]

Does anyone have advice for paying for flights/hotels? My dad is doing a clinical trial at Weil Cornell but lives in MO and will have 15ish trips so it will really rack up. Thanks in advance. PS we looked at angel flights but thats not a good option for them due to dad being in a scooter.

[AlanMeyer]

Hello tjmm7f,

I think the first thing to do would be to call the trial administrator at Cornell and explain the problem. If you don't have a phone number, try looking up the trial at clinicaltrials.gov and seeing if there's a phone number listed there. There may be other hospital sites, perhaps one in or near Missouri, where the trial is active. Even if there are no other trial sites, it may be that most of the 15 visits are for the purpose of performing tests that can be performed anywhere. For example, common blood tests may be done in Missouri or, if the tests are unusual and only possible at Cornell, it may be that blood draws can be done in Missouri and Fedex'd to New York.

Another possibility is to find out who is paying for the trial. It's often a combination of organizations such as a drug company and the National Institutes of Health. It may be that one of those organizations can help.

But I think the first step, if you haven't already done it, is to appeal to the trial administrator at Cornell and explain the problem. He or she has probably seen this multiple times before and may have suggestions and/or may be able to refer you to others at Cornell, or elsewhere for help.

There may also be local help. I googled for " financial help for cancer patient in Missouri "

(without quotation marks) and got a number of promising hits.

I wish we had a better system for financing health care in the U.S.

Good luck.

Alan

[tjmm7f in reply to AlanMeyer]

Thank you Alan, We have contacted the social worker assigned to this trial. The hope lodge is still closed due to covid and she did sent us information for angel flights however it would require 3 planes to get us from MO to NY and my dad has trouble getting in and out of planes so really trying to find a non stop option with his scooter and all he has to take.

[Jp2sea]

I think I stayed in a Hope Lodge for a few nights during my surgery. This site looks like it has some good info: cancer.net/navigating-cance....

[Magnus1964]

I don't know if they would pay for this or not, try the Patient Access Network.

[AlanMeyer]

Hello tjmm7f,

I just got another idea.

Maybe you could figure out all of the airlines that can get your Dad from Missouri to New York City and call them. What you'd probably want to do is to search Google for the name of the airline and add "help", or "customer service", or something like that to the search box.

When you get to someone, explain what the problem is and ask if they can help with free tickets. Explain that your Dad is able to travel and his disease is not communicable, no one can catch it from him and he doesn't need any special treatment or considerations on the flights. Maybe, if they won't give him 15 flights, maybe three different airlines can offer him five flights each. I'd check with Weill Cornell, but my guess is that they don't need your Dad to show up on 15 specific days, but perhaps once in each of 15 different weeks, or whatever. That would enable the airline to help out with tickets that they weren't able to sell anyway.

Is this likely to work? I have no idea, but it might be worth a shot.

Alan

[tjmm7f in reply to AlanMeyer]

Thanks so much for this idea. I will all Delta today. Unfortunately dad does have to go every time. He has to have blood work monitored there they said because of the risk of platelet problems but maybe they will be more flexible after the first few. He goes for his first appt tuesday so hopefully will find out more.

[kaptank]

I think trials should be at no cost to the patient. Certainly on the MAGNITUDE trial it is automatic - both travel and accomodation. Its only fair. Trials should be explicit: no cost to the patient. Find a trial administrator. In hospitals doing trials there is usually someone doing the organising for visits, scans, tests etc. Ask the hospital for its trial admin office. They are often a good first contact and know what to do and how to apply for it. Alternatively, contact anyone who has been in contact over it eg your doc or check any emails that you received about it, screening, notification etc.

[tjmm7f in reply to kaptank]

They said none of the meds cost but the travel is a cost...ill see if i can find out anything else.

[kaptank in reply to tjmm7f]

Man, that sucks. I am very sorry. Good, good luck. Everyone here is wishing the best.

By the way, can you tell us what the trial is, its phase (phase 1 is just proof of principle, phase 2 is finding SEs and determining usage, dosage etc. Phase 3 is large scale preparation for FDA approval.) What treatment is it testing and how? These are all things that the trial organiser should have told you - in writing. There are lots of people here on HU that follow closely developments in trials. It's all part of our communal memory.

[tjmm7f in reply to kaptank]

Thank you for the well wishes. The trial is for actinium 225. Its phase 1/2 at Weill Cornell. To find correct dosage. Scott tagawa (sp) is the lead investigator

[kaptank]

Thanks. I assume it is AC225-PSMA. If he does it, please do a short post here to let us know how it goes. A lot of people would be quite interested.

[tjmm7f in reply to kaptank]

Yep that is the one and I will keep you posted!

[kaptank]

All the best and more. That is a worthwhile trial to get on.

[tjmm7f in reply to kaptank]

Thanks so much