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Frequent travel taking a 7-year old with brain cancer to clinical trials - options?

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Frequent travel taking a 7-year old with brain cancer to clinical trials - options?

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Old May 19, 2010 | 12:58 pm
  #1  
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Unhappy Frequent travel taking a 7-year old with brain cancer to clinical trials - options?

So, a co-worker of mine had her 7 year old son diagnosed with a serious brain tumor a few weeks ago. He's completed his radiation treatment and chemo, and now he's off to clinical trials.

Because of this, my co-worker will be spending every other week on a RT from MSP-PIT. I know she's reached out to a couple charitable organizations who have given her some miles. But I'd like to toss the question out to everyone here that might be able to point her in another direction that may be able to help her and her family. They're not frequent travelers and don't know the ropes like we do.

What are some of the charities that help in cases like this? Will DL help at all via a discounted ticket or donated miles? Maybe an elite status comp so it's easier for them to travel?

I'm just tossing ideas around here. Any ideas that anyone has would be much appreciated.

Thanks.
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Old May 19, 2010 | 1:13 pm
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Sorry to hear about their son.. While I don't think that DL would provide discounted tickets (I haven't heard of them doing that before) I would maybe try to contact the hosptial or something to see if they have any suggestions
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Old May 19, 2010 | 3:48 pm
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Your co-worker should contact the social worker at the hospital to see if they know of anything that might help.
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Old May 19, 2010 | 3:53 pm
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DL nonstops are $275 if you can find T availability.
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Old May 19, 2010 | 4:57 pm
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http://www.angel-flight.org/air_tran..._charities.htm

http://www.thirtythousandfeet.com/or...m#humanitarian

When my sister was commuting to Sloan-Kettering, she got some
free flights, but being old and stuff I forget the name of the
organization that got them for her. Edited to add this is it -
http://www.corpangelnetwork.org/

Good luck
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Old May 19, 2010 | 4:59 pm
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have your friend contact angel flight

http://www.angelflight.com/

they have regional offices and have been a a godsend for friends dealing with with similar issues.
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Old May 19, 2010 | 5:55 pm
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Shouldn't the drug company or research team pay the out of pocket expenses of those involved in clinical trials? Otherwise it would be exploiting desperate people and that would be difficult to clear with an ethics committee.
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Old May 19, 2010 | 6:32 pm
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Originally Posted by Mr H
Shouldn't the drug company or research team pay the out of pocket expenses of those involved in clinical trials? Otherwise it would be exploiting desperate people and that would be difficult to clear with an ethics committee.
There is very little funding for pediatric cancer drug clinical trials. Because the relevant population is so small (fortunately), there is little money to be made by the big pharmaceutical companies in developing drugs for pediatric cancer treatment. For example, even the most prevalent type of pediatric cancer, ALL (acute lymphoblastic leukemia) only involves about 3000 patients a year. One of those patients was my son -- now 3+ years off treatment. So, when investing money in a pediatric cancer drug, which might sell only tens of thousands of doses, vs. a high blood pressure drug which might sell tens of millions of doses, the research money goes into the drugs with the largest user populations.

Moreover, they don't have enough patients (again fortunately) to conduct larger clinical trials with a lot of these drugs. They also have limits in what they can do with pediatric patients vis-a-vis informed consent. (for example, it is considered unethical to use placebo-controlled studies with cancer clinical trials, so all trials are current standard treatment vs. the investigational treatment.)

Even in fighting for cancer funding from governmental entities like NIH and NCI, they devote more resources to cancers which may affects a lot of people (breast cancer, lung cancer, prostate cancer, etc.) vs. pediatric cancers which only involve relatively few patients.

Therefore, many of the clinical trials are small population trials run by the larger pediatric cancer hospitals, or pediatric clinical oncology organizations, such as COG, the Children's Oncology Group.

But many times they don't have a lot of funding, so they are unlikely to be funding airline flights for participants.

Here, however, is the most comprehensive list of available sources for help in airline flights for pediatric cancer treatment:

http://www.acor.org/ped-onc/resource...neflights.html

Good luck to your co-worker and her child. Having a kid with cancer is a very difficult situation, on many fronts.

Please feel free to PM me or have your co-worker e-mail me if there is anything further I can do.
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Old May 19, 2010 | 6:53 pm
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Do they know how long he will be getting the treatments? Would something like Ronald McDonald House be an option? http://rmhc.org/what-we-do/ronald-mcdonald-house/

My best to your co-worker and her young son. It's difficult to read about; I can't begin to imagine what it's like to go through.
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Old May 24, 2010 | 6:36 am
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Hi,

I work in the clinical research industry. If this is a trial that is having a hard time enrolling patients (if the eligibility criteria is narrow and they are desperate for patients), the sponsor of the study may in some cases be willing to pay for travel costs. Have the child's mother inquire from the study coordinator at the research site if the sponsor will cover travel costs. They may. Best of luck.
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Old May 24, 2010 | 6:38 am
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Originally Posted by Mr H
Shouldn't the drug company or research team pay the out of pocket expenses of those involved in clinical trials? Otherwise it would be exploiting desperate people and that would be difficult to clear with an ethics committee.
Pharma companies may pay for travel costs, dependent upon the study and whether they are able to enroll subjects locally. Most studies are run at multiple locations throughout the US (and/or the world), so they can typically depend on finding patients local to each study site.
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Old May 25, 2010 | 6:31 pm
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Most airlines & hotel chains also have programs where points & miles are donated & given to various charities, such as Marriott "Just-for-the-Kids" program and both Delta & United have "free miles" programs:
http://www.delta.com/skymiles/use_mi...ish_charities/
http://www.united.com/page/article/0...2Fcharitymiles

Good luck to you all.
travelsavant is offline  
Old May 25, 2010 | 7:13 pm
  #13  
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My father and I both fly/have flown for Angelflight. They are set up regionally and use GA aircraft, so are not really suitable for PIT-MSP flights.

http://www.corpangelnetwork.org/corporate/index.html is the best for this kind of flight, or one of the airline's miles donation groups.
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Old May 26, 2010 | 1:31 pm
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Since they are flying to PIT, I assume that the trial/treatment will be at UPMC? If so, and if they need to spend the night, Family House is a good option: http://www.familyhouse.org/ . We do also have a RMcD house (http://www.rmhcpgh.org/), but the Family House locations are quite a bit closer to the hospitals (some are walking distance away).

Also, I imagine that your co-worker will be renting a car or taking a taxi to and from the airport, given the stress on her son. If any other family members fly out separately, though, and they need to save money, they might want to consider the 28X bus, which runs every 30 minutes from the airport to downtown and to Oakland (where most of the hospitals are located).

Best wishes to your co-worker and her son.
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Old May 27, 2010 | 8:44 am
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Contact Mercy Medical Airlift

I recommend the family contact Mercy Medical Airlift @ 888-675-1405. I'm confident that they can assist with charitable airline tickets for patient and a escort. Go to http://www.MercyMedical.org for addional information.

Jim
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