Every Friday at noon in Fairfax, a group of oncologists, research scientists and, sometimes, patients convenes at the flagship hospital of Virginia’s Inova Medical Group. The goals are threefold: help physicians better understand targeted therapies; communicate with and about cancer patients who might need new therapies; and use the collected expertise in the room to design clinical trials and find patients for them.
Who’s in and who’s out of this meeting might change, but with them like clockwork is oncologist Timothy Cannon, Inova Medical Group clinical director and moderator of this weekly meeting known as the molecular tumor board. The overall mission remains the same: Finding ways to use personalized medicine to bring targeted therapies to more cancer patients.
But there are barriers that still need clearing, not only in Cannon’s group but also across the healthcare industry, when it comes to increasing access to personalized medicine. Namely, the costs, the gaps in knowledge of some providers who can order genomic tests but don’t know what to do with the results, and an outdated regulatory infrastructure. Those three things — one collective hurdle — drove much of the conversation during a talk about personalized medicine at the sixth annual BIO Patient and Health Advocacy Summit in Washington, D.C.
For patients, the stakes are high. Personalized medicine gives them a chance to understand their disease better and find a treatment that’s more effective. In Cannon’s weekly meetings, patients are invited to the whole meeting. Oncologists will go over their histories and talk about their genomic findings.
“I think they like to see that people care about them and people are discussing them and we’re talking about something other than chemotherapy,” Cannon said. “I do worry sometimes we’re engaging in this uber-marketing that promises more than we deliver in targeted therapies.”
Still, as Cannon noted, $6,000 for a targeted therapy compared to $9,000 for a PET scan is “money well spent.”
But targeted therapies come from testing. “It does frighten patients to know we can’t guarantee they won’t have a couple-thousand-dollar bill for the test,” Cannon said.
“Especially if the provider might not be able to know what to do with the results,” added Andrea Ferris, president of the LUNGevity Foundation, a Chicago nonprofit focused on lung cancer.
As Ferris noted, lung cancer patients stand to gain from testing, but about 75 percent of patients don’t get tests. Some of the trouble comes from providers knowing they won’t be reimbursed for the time and effort.
“Our regulatory infrastructure hasn’t quite caught up to the scientific progress that we’ve made,” said Rasika Kalamegham, group director of U.S. regulatory policy at Genentech.
In some cases, like lung cancer, payers are recognizing the need for testing, Kalamegham said. But the level of evidence that’s needed to recommend a targeted therapy for a patient is different from the level needed for a payer to commit to covering it.
“If I go to Lab A or University B or Company C, I might get three different results,” Kalamegham said.
What, then, to do for the patient? The three panelists agreed that patient advocacy organizations have to keep pushing for tests to become part of standardized care. Educating providers and patients will help.
“The most important thing is to be that voice to educate folks,” said Kalamegham. “Patients, when they become empowered and demand [tests], it does happen.”
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