Desperate cancer patients prepared to pay for immunotherapy treatment


By Amanda Sheppeard

2 Sep 2016

Cancer patients desperate to buy themselves more time are spending thousands of dollars to self-fund immunotherapy treatment even though there is little evidence to show it is likely to have a major benefit.

A retrospective review describing outcomes and toxicity of self-funded pembrolizumab in patients with non-melanoma solid cancers at Chris O’Brien Lifehouse has followed the journeys of 21 patients who planned to receive the treatment over an eight-month period in 2015.

The results have been published in the Internal Medicine Journal and showed that while pembrolizumab was well tolerated, “meaningful responses” were observed in only 17% (three) of the 18 patients who received at least one dose.

This response continued after 5-6.5 months follow-up in two patients and more than eight months of follow-up for the other responding patient.

However there was a cost to the other patients that was highlighted by the authors.

“Financial impact to the patient can be substantial,” they wrote.

“Outcomes for 33% were poor with three patients dying prior to receiving therapy and four dying within weeks of receiving one dose.

“This highlights issues regarding the careful selection of patients, futility of anti-cancer therapy at the end of life and patient’s perceived benefit of receiving this therapy.”

The researchers said it was interesting to note that the 14 (67%) patients who requested pembrolizumab had worse outcomes than the seven (33%) of patients who were offered pembrolizumab by the clinician.

They conceded that in an era of rapid dissemination of information regarding advances in cancer care, desperate patients were “increasingly seeking to access drugs on the basis of early data.”

“They are ill equipped to critique or contextualise the evidence of benefit of these therapies,” they wrote.

“The desire to access such high cost therapy is exacerbated by the understandable enthusiasm of the medical, pharmaceutical and general community for these therapies in the media.”

Out of the 21 patients that sought to self-fund pembrolizumab, three (14%) patients died before the approved drug could be supplied and four (19%) died within 13-43 days of receiving a single dose of pembrolizumab.

“This outcome highlights several issues regarding the careful selection of patients, futility of anti-cancer therapy at the end of life and patient’s perceived benefit of receiving this therapy,” the authors wrote.

“Indicators of overly aggressive end-of-life cancer care have been identified with respect to chemotherapy use but are lacking for immunotherapy agents.

“This includes but is not limited to, receiving chemotherapy in the last two weeks of life, commencing a new line of chemotherapy in the last 30 days of life, the timing and delivery of hospice care.”

The researchers found cancer treatment in patients nearing death had been reported to be increasingly aggressive in an analysis of more than 28,000 patients monitored by the SEER registry, with the use of chemotherapy within the last four weeks of life documented at rates of 12-18% and 8% within the last two weeks of life.

With data for immunotherapy showing promise in solid organ malignancies, being better tolerated than cytotoxic agents with the possibility of durable responses, patients may feel compelled to pursue such therapy, however this could be detrimental, the authors wrote.

“In turn, this may delay appropriate transition to palliative care,” they wrote.

“Despite documentation of best supportive care as an option to some of the patients in this cohort, patients persisted with seeking self-funded immunotherapy. We were not able to explore the level of understanding that patients had regarding their prognosis, perceived benefit of seeking self-funded therapy or possible futility. Nor were we able to document the level to which withdrawal of anti-cancer therapy was discussed.”

And then there was the additional financial burden.

During the period that the cohort of patients self-funded their therapy through a cost-share program, the cost per 50mg vial of pembrolizumab was $2230. For the average 70kg patient, this equates to $6700 per cycle or $20,000 for three cycles.

Patients were required to finance three of the first six cycles of treatment and all cycles of treatment thereafter were charged. The current cost-share program charges $1472 per 50mg vial with no free cycles.

“Financial burden was not assessed in this cohort and although a difficult issue to raise when discussing a terminal illness, it has influenced treatment decisions with one patient achieving a partial response temporarily ceasing therapy as a consequence,” the authors wrote.

“There are of course limitations of this data with our review being retrospective and descriptive with small patient numbers,” they concluded.

“Nevertheless, the information gleaned from this cohort demonstrates occasional activity of anti PD-1 therapy in non-approved solid cancers with a low toxicity profile and sheds light on the shortcomings and difficulties in the management of cancer patients at the end of life.”

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