There will be some 2,200 scientific presentations offered at the American Society of Clinical Oncology annual meeting starting Friday at Chicago’s McCormick Place, but one of the more noteworthy sessions will be held several blocks away, where patient advocates will be speaking out against barriers to care created by the insurance industry and other forces.
“The fundamental goal is to broadcast and amplify the authentic voice of patients and the vital concerns we have about the barriers to access and to medicines and innovative therapies patients need and deserve,” said Jonathan Wilcox, policy director for Patients Rising, a Washington, D.C.-based organization which he co-founded last year.
Wilcox and other patient advocates will be speaking at a forum scheduled for 2 p.m. Central time Saturday. A highlight will be the release of findings from a cancer-patient survey which Wilcox said details insurance company efforts to limit patient access to needed drugs and treatments.
One of the speakers will be Robert Goldberg, vice president of the New York-based Center for Medicine in the Public Interest, who noted the difference between his organization and the “Right to Try” movement promoted by the Goldwater Institute and others.
“Right to Try focuses on drugs in clinical development, our focus in on medicines that have already been approved [by the Food & Drug Administration],” he said in an interview Friday. “But, once these drugs are approved, financial hurdles are imposed that cancer patients have to climb over.”
The forum will also serve as the launching event for the ICER Watch patient portal, which will track the movements of the Institute for Clinical and Economic Review, which last month released a report on the effectiveness of treatment options for multiple myeloma, a blood cell cancer.
A Deep-dive Into Specialty Pharma
A specialty drug is a class of prescription medications used to treat complex, chronic or rare medical conditions. Although this classification was originally intended to define the treatment of rare, also termed “orphan” diseases, affecting fewer than 200,000 people in the US, more recently, specialty drugs have emerged as the cornerstone of treatment for chronic and complex diseases such as cancer, autoimmune conditions, diabetes, hepatitis C, and HIV/AIDS.
The initial draft, posted in April, received several negative comments from cancer-related organizations. The American Society of Hematology, for example, expressed concerns the report “will be used to limit the options for patients in receiving the best possible treatment,” and said the study did not “represent the realities of clinical practice.”
Goldberg agreed, noting that clinical effectiveness researchers need to develop an equivalent to baseball’s new Wins Above Replacement statistic that measures the value of baseball players relative to their peers.
Wilcox acknowledged that new methods to address the expense of cancer treatment need to be found.
“Cost is a concern, of course it is,” Wilcox said. “But the last way to address costs is to deny patients the medicines they need and deserve and to declare that some patients are too costly to treat and too expensive to save.”
Steven Pearson, ICER founder and president, said, “It’s a shame they’re still saying these things,” when his organization is also trying to increase access by holding the line on drug prices. Pearson, who will not be attending the ASCO meeting, said prices for some cancer drugs are “not in alignment with how much they help patients.”
“If we don’t figure out how to make the price of drugs match their benefit, we will have reduced access,” Pearson said.
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