E-Newsletter - March 2019
Alliance PI Perspectives


The Reality of Bringing Clinical Trials to the Medically Underserved

By Zoneddy Dayao, MD
Principal Investigator at the University of New Mexico Comprehensive Cancer Center

I had just finished reviewing my new patient’s chart and am confident she would qualify for the ALTERNATE (Alliance A011106) trial. After all, I have screened so many and know the eligibility criteria quite well. I made a little note for myself. No comorbidities listed - an ideal candidate.

 I walked in the door and faced my patient, a middle-aged Native American woman who looked somewhat older than I expected, age lines perhaps reflecting a hard life led. I introduced myself, apologetic for running late, and she smiled to say it is no problem. She was also late because she comes from a town outside Gallup, NM, and had to wait for a shared ride for her three-hour trip to the cancer center. Several other patients needed to be dropped off first, and she was the last one.

 In the next hour, her story unfolded, how she had not seen a PCP for years and was therefore really not aware if she has other medical problems. She never had routine mammograms but noted that this breast mass which she first felt a few years ago, had lately become uncomfortable. She had missed her previously scheduled appointments here as we were unable to reach her. She informed us about her cellphone’s limited coverage, and how, when we finally reached her, transportation was problematic with gas money being scarce. She went on to reassure me that for as long as we inform her ride three days ahead of time, she will likely be able to avail of a shared ride for her six-hour roundtrip commute.

I slowly folded my little note back and tucked it in my pocket. I did not even dare ask if she was interested in a clinical trial that required biopsies and monthly follow-up, for fear that she will see my questions as insensitive, that I did not pay attention to what she had said, and that I did not understand that her reality is so different from the rest for which the trial was intended.

In a recent Alliance meeting, the health disparity issues and need to recruit minority patients were emphasized. And yet, the large chasm between the intent of clinical trials and its application for this population is very much apparent for us clinicians working with this population.  In this largely rural state where poverty is commonplace, where patients travel a staggering distance to get healthcare, one needs to be mindful that unless there is trial support for basic needs such as transportation and overnight accommodation to name a few, recruiting the very patients for which data is lacking will remain a challenge. It is akin to asking a patient from Rhode Island to commute to New York and back for a clinic visit, mandatory biopsies and blood draw, a proposition that would be seen by most as bordering on absurd. The reality remains that the lack of availability of funds built into the trial budget to address social and financial difficulties constitutes an ongoing major challenge for accrual. This, among other factors including cultural barriers, would need to be included in the designs and budgets of clinical trials aimed at minority recruitment.

I left my clinic later that day and saw my patient still waiting patiently for her ride back home where a long afternoon still awaits her. For those of us in the frontline of recruiting patients, a similar story is heard over and over again. We are reminded that sometimes, it may not be the patient’s unwillingness to participate in trials but their lack of the means to do so. And perhaps, the allocation of trial resources to address these issues will help improve minority accrual.

 

 

 

For other articles in this issue of the Alliance E-News newsletter, see below.