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Trial participation -- disparities, barriers
Okay, thanks for reply AA, but so as not to hijack Marcia's vaccine discussion, I'm moving your reply to my questions here.
I asked: I'll throw out a concern, not about vaccine trials but about trials in general: what do you all think about the fact that access to trials, and to expanded access (such as TDM-1) is limited by a person's ability to afford the travel and other expenses? Unless of course you happen to live in a city and that city happens to be a trial location. I can see for a wee trial (20 people) like Marcia is considering, that it's impractical to expect it to be available more broadly. But for the larger ones, with locations all over the country yet still not not available locally for most -- I see a big access disparity issue here and have not heard much talk about it. Your thoughts? We can take it to its own thread if anyone want to talk about this.
And AA answered: 10 cents from far-flung Alaska....
Treatment as a relatively rural Alaskan gave me some perspective about this, so I'll pass it on.
For the most part, when talking about urban vs rural, one tends to think in terms of rural people having to drive long distances to get there, and stay in a motel during each active testing portion of a trial.
For Alaskans it is often more of a question of having to do all of that by boat or plane just to get standard treatment.
After treatment, because my cancer center was in Seattle, I took the opportunity to investigate trials offered there, and eventually persuaded a trial coordinator to include me in one that I have been doing for 7 years now. As part of that trial I have an annual transvaginal ultrasound done only on-site in Seattle, plus blood draws periodically both during that one visit each year as well as in Alaska and sent on dry ice to Seattle. So... It sometimes can be done, although it is not easy or simple. I pay for all draws done in Alaska.
Other trials ARE more difficult. I participated in one offered by the Mayo clinic by traveling on my own dime to their facilities in the Lower 48 for the initial verification that I met their criteria plus a physical, and then did the blood draws in Alaska.
What it takes is determination and personal dependability to follow through, as well as some exceptional cooperation from trial coordinators, plus the participation and verification by one's local PCP, and it only happens for trials where the on-site function is not essential throughout the trial for site-standardized scientific authentification purposes.
Debbie again: So, you had considerable expense to consider, in your trial participation. For some it's the travel (including lodging) costs which are huge, but also it can be time lost from work that's not compensated, and/or issues about holding down the home front, especially for those with small children or other caregiver obligations. I'm not saying I have answers, and it should be said that those of us (me included) who live in rural or more-isolated areas by choice do accept that we've chosen this difficulty because there are, for us, compensating up-sides.
Trial participation seems less of a disparity issue if we're just looking to tune up or maybe prevent something but what if we're looking for options when most options have been used up, or there just aren't many good options to begin with (like HER2+ before Herceptin or perhaps today, triple negative)? That's a pretty big disparity. Do you think there should be help with access in that situation, and if so -- who would foot that bill? Should it be a requirement when an agency or company is designing the trial protocol, cost to be figured in by them? Should it be part of health insurance? Would there be support for a national charity or already-existing cancer foundation to step up here? I know that there do exist some more-local support agencies, and there are things like angel flight. But for most people, it's all just so daunting that they don't pursue these options. It would be different if it were standard of care to not only offer trial participation, but also support with access. We could look at this from two perspectives -- the disparity one, and the "we must have trial enrollment to learn anything" one -- and either way, I can see a good argument for addressing the issue.
Debbie Laxague
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