In 2009 and 2010, as the economic collapse shuddered across the globe, oncologists in California noticed a troubling trend: Three patients who had had serious tumors under control for as long as eight years reappeared in the clinic with massive cancer regrowth which, in one case, required emergencysurgery.
In retrospect, this downturn in fortunes should have been predictable: The economic recession had forced the patients to discontinue a life-extending medication.
“In all three cases, the patients developed new symptoms and came in after having missed an appointment or two without us knowing that they had stopped the drug,” said Dr. Katie Kelley, co-author of a letter-to-the-editor in the Aug. 5 issue of the New England Journal of Medicine, which describes the cases. Kelley is also assistant clinical professor of medicine at the University of California, San Francisco (UCSF).
And there have been other such cases, both at UCSF and around the nation, either of patients stopping medications altogether or rationing in the hopes of making precious supplies last longer.
“Certainly we’ve seen an increase in affordability concerns,” said Stephen Finan, senior policy director of the American Cancer Society Cancer Action Network in Washington, D.C. “Very definitely we’ve seen an upward trend in the last couple of years of people struggling with deductibles and cost sharing.”
“There has been some evidence to suggest that it is happening on a wider scale,” added Robert Freeman, professor of pharmaceutical sciences at Texas A&M Health Science Center’s Irma Lerma Rangel College of Pharmacy. “This not only happens when the economy turns down, but if Medicare programs run into budgetary problems and become restrictive or if private co-payments go up.”
All three patients described in the journal article had been taking Gleevec (imatinib) for gastrointestinal stromaltumors (GIST). Gleevec is considered by many to be a wonder drug, since it appears to be close to a cure for many people with a form of blood cancer known as chronic myelogenous leukemia (CML). The drug has also extended the average survival of GIST patients from just a few months to an average of five years, the UCSF team noted.
However, Gleevec costs patients close to $5,000 per month. That’s out of the reach of most Americans without health insurance, and it can make Gleevec tough to afford even when insurance is available.
All three patients described in the journal had been part of the trial that led to Gleevec’s approval for GIST and had been taking the drug since 2001. And all had suffered economic reversals, including job losses, that forced them to stop treatment. As a result, all experienced recurrences, often within a matter of months.
“These were people who previously had had their drugs covered and all of a sudden the greater-than-$5,000-a-month cost became really prohibitive,” said Kelley. “It’s completely understandable.”
Fortunately, despite the massive regrowth of their cancers, none of the patients ended up with “major consequences” from their involuntary drug hiatus, said Kelley, though that isn’t uncommon.
“If a medication is controlling a chronic condition then the chronic condition is going to worsen over time. It may not be immediate but you’re going to have the person’s condition essentially return to the point it was before it started therapy,” Freeman said. “You will see downstream costs go up as a result of that because the person will become sicker.”
Doctors did find a way to get the three UCSF patients back on their medications — at least temporarily — and some of these options are available to others as well.
If a patient has a large co-pay, or no insurance at all, the “main resource to offer is connection with patientassistance programs [run by pharmaceutical companies],” Kelley said.
“There are some foundations and charities that do specifically help people who are struggling with their cost-sharing on prescription drugs or other cost-sharing problems, and some of the pharmaceutical companies have assistance programs where they will provide drugs at lower or no cost for patients in need,” added Finan. “Those are the only real options at this point for people who are pressed to afford their prescription costs.”
Although “getting drugs for two months isn’t ideal for patients who still don’t have insurance at the end of that time, it’s a starting point,” Kelley said.
In the future, elements of President Obama’s Affordable Care Act should help protect people in this situation, such as the patient with GIST described here who was refused coverage as a result of a pre-existing condition.
“Eventually rules will be set and that practice will be prohibited,” Freeman said.