We need to fix this broken system. Our loved ones are depending on us – Bree Burks

I’ve suddenly found myself on the patient side looking for clinical trials. My experience has been shocking so far and incredibly disappointing.

Like many people in this industry, I’ve spent my career caring for patients and advocating for them to get the next generation treatment. I now see the system is more broken than I even realized.

One of my closest family members has been diagnosed with stage IV cancer out of the blue. It’s been devastating. So, finding the right clinical trial for her currently untreatable disease has been critical and yet excruciating to navigate thus far.

I’ve spent the majority of the past week simply trying to find a PERSON at a study site that can help screen her for two trials I believe she qualifies for. Early Phase 1-2 results are good, and this drug could markedly extend her life.

I’ve talked to the sponsor’s general trial hotline, the outsourced recruiting agency, filled out a WORD DOCUMENT to pre-screen her and waited on pens and needles for the 3 phone conversations with screening agencies I had to take. They put her information in their “database.” They cannot answer any questions beyond what is publicly posted about the trials I’m interested in.

This morning I was finally given a list from the recruiting agency that included emails and phone numbers to call at a few research sites that she could reasonably make it to. EVERY NUMBER out of the 15+ that I called was a central office number at the site. No one answered that could help me. I left a couple of messages.

I did receive one call back this afternoon from a site. They informed me that I now have to fill out THEIR central screening form (also a WORD DOCUMENT). Then, I need to wait 3-4 days to talk to another Study Navigator at their site about trial options. I asked, “Can I please just get connected to a coordinator or recruitment specialist that can help screen her for 2 specific trials? I know the only 2 trials we are interested in.” The response was a hard “no, this is our process.”

The crazy thing is these trials have been recruiting for YEARS and disqualify patients once 1st line treatment is started for their metastatic disease. I see now why they cannot enroll as we will not be able to wait much longer to begin 1st line therapy due to the severe symptoms she is experiencing.

For all of you in the trenches, thank you for what you do. We need to fix this broken system. Our loved ones are depending on us.

I will continue to provide updates on my journey for anyone interested….

Source: Bree Burks / LinkedIn