“Stop telling the lie that cancer is a battle,” says Mary Elizabeth Williams.
In a piece published at the New York Post, the staff writer for Salon explains why those cancer “battle” metaphors aren’t helpful to cancer patients.
“The word ‘battle’ is dramatic and urgent,” she writes. “It shouts out from headlines in an attention-getting way. But once you’ve experienced cancer up close, you see that it is dramatic and urgent enough without forcing the point. And if you want to speak of life as a battle against mortality, remember then that in the end, we all ultimately reach the same result.”
Williams’ piece reminds us how the media narrative and our word choices affect patients who must live every day with their disease. One-size-fits-all doesn’t work for treatments. It also doesn’t work when talking about the problems and challenges facing each patient. The same set of words can have very different meanings to two different patietns. A point that’s made by this excerpt of Williams’ piece:
On a bright April afternoon two years ago, I sat with my friend Debbie, having a conversation about the future. Debbie and I had known each other for more than 20 years. We had been college roommates and bridesmaids at each other’s weddings. We were both now working mothers of two.
But thanks to an innovative immunotherapy clinical trial, I was now free of the metastatic melanoma that had threatened to kill me. She, on the other hand, had just heard her doctor say there was nothing more they could do for her ovarian cancer. That was the day she asked to promise her that no matter what happened next, I’d never let anyone say that she’d lost a battle.
Six months later, as I delivered her eulogy, I vowed again to keep my word. I have kept that vow ever since.
Losing Its Way
John Kabateck, president of Kabateck Strategies and a member of our board of directors, writes in a piece published at Fox and Hounds that the federal 340B Drug Discount Program has lost its way.
In 1992, Congress passed the 340B Drug Discount Program as a way to help uninsured patients gain access to life-saving treatments. Pharmaceutical manufacturers were required to provide big discounts to medical clinics and qualifying hospitals in exchange for gaining Medicaid approval for their treatments.
Kabatech writes that the 340B program has veered away from that mission.
“Because of insufficient guidance and weak oversight, the program bears little resemblance to what Congress envisioned in the early 1990s, and there’s a tragic and inequitable cycle in play,” he explains. “There are no meaningful standards in place to determine if and how these hospitals are providing care to low-income patients, and the truth is that most 340B hospitals provide little to below average levels of charity care.”
The Interests Behind ICER
In a post for the Huffington Post, author Paul Alexander reveals the big interest groups backing the Institute for Clinical and Economic Review and its effort to place a dollar amount on every treatment.
ICER’s funders, according to Alexander, include Blue Cross Blue Shield of Massachusetts, Harvard Pilgrim Health Care, Kaiser Permanente, Partners Healthcare, Aetna, Anthem, UnitedHealth and former Enron trading hedge fund manager John Arnold.
There’s more evidence that ICER represents a very clear side in the health care industry. “ICER president Steven Pearson has his own connection to the insurance industry, having once served as a research fellow at America’s Health Insurance Plans (AHIP), the trade association representing insurance companies,” he writes.
In addition to revealing ICER’s backers, Alexander’s post is worth a read for his explanation of the drug reimbursement process — a process that the Harvard Business Review described as “a giant black box.”
To fathom the reimbursement system you have to understand how fees are determined. First, a drug must be placed on a formulary, a list of prescription medicines covered by insurance companies. Formularies may vary from one health plan to another, but if a drug is not on a formulary the consumer must pay for it out-of-pocket, often at 100 percent of the cost. Being profit driven, insurers want to maximize the number of drugs excluded from formularies. For those drugs that do make it, the formulary establishes the amount that is paid in reimbursement.
On the Docket
Stat News reviews a case being considered by the Supreme Court that could affect patent protections for treatments.
The case is tackling the question of what standards should be used for interpreting patents. Plaintiffs, represented by attorney Garrard Beeney, are challenging the Obama administration’s new rules that established “a new process to review patents,” which they say, makes it easier to invalidate patents. Right now, there are differing standards between litigation and “inter partes reviews,” the new administrative process for challenging a patent with the U.S. Patent Office.
The goal of creating inter partes reviews was to improve the costly and time-consuming patent process by avoiding litigation. A great goal. However, in the process, it has provided challengers an opportunity “to shop their challenges to the most hospitable forum.”
Why does this matter for patients? Companies will only invest billions of dollars in developing new treatments if they know that they can recoup those expenses with a patent. Without strong patent protections, companies have no incentive to invest more money in innovation. That leaves patients with the treatments we have today.
Depending how the justices rule, we could see changes coming to patent rules.
“In patent law, much turns on the nitty-gritty details. There’s nothing grittier than the issue,” Robin Feldman, a law professor at the University of California, Hastings, told STAT News. “It matters a lot.”