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Lymphoma and Pets
Cancer Has Been Conquered! (by the Financial Stress it Causes)
A study published in The Oncologist appears to confirm that for many patients, having cancer is not nearly as stressful as trying to find ways to pay for the treatment.
To paraphrase FDR, under whose administration the National Cancer Institute was launched, the only thing we have to fear about cancer is the bill itself.
According to Marvin Delgado-Guay, MD, from the University of Texas M.D. Anderson Cancer Center and colleagues, more than thirty percent of patients with advanced cancer said that the financial distress brought on by out-of-pocket costs and related expenses was more severe than their physical, family, and emotional distress.
Granted, researchers only included 149 participants from two medical centers in their study, a number small enough to permit them to hedge their own findings by cautioning against any generalizations.
But since the research team is not trying to change NCCN treatment guidelines, and since their conclusion largely confirms what many have safely assumed, the wise approach might in fact be to state in general that the financial burden imposed by cancer care today is phenomenally stressful for patients, almost regardless of their income level.
Cancer's Toxic Sludge
For too long, cancer's financial toxicity was ignored; forgotten in the haste to defeat the disease. In that time, the cost of cancer care has gotten so outrageously high that some researchers have argued that cancer is a risk factor for personal bankruptcy.
It isn't difficult to find the bad guy here. For decades, pharmaceutical companies have been developing sub-standard drugs for cancer treatment. Instead of pricing them at a figure commensurate with their actual value, they are priced as high as the market can bear.
As it turned out, this market, driven by the most fundamental human responses- the hope to stay alive and the fear of dying- could bear quite a bit, even for underachieving drugs that might grant a fraction of patients taking them a couple additional months of life.
... or, put another way, even for underachieving drugs that offer a majority of patients taking them no additional months of life but a touching legacy for the family members left behind to find ways to pay for those worthless drugs.
... or, put yet another way, even for underachieving drugs that offer all patients taking them an undue measure of side effects and adverse events ranging from the familiar (diarrhea, nausea, fatigue) to the strange (eyelashes growing on the insides of one's eyelids) to the outright horrible (abnormal openings between the gastrointestinal tract and the vagina, known as enterovaginal fistulae).
Representatives from pharmaceutical companies like to remind anyone within earshot that, on average, developing and delivering one drug costs about $1.2 billion.
They omit the fact that it doesn't cost Pharma $1.2 billion; that's the total cost, from bench to bedside. Often, the basic research needed to discover these drugs is conducted at publicly funded institutions such as university laboratories.
... Put another way, when stressing over finding a way to pay for cancer drugs, perhaps patients would be soothed by the knowledge that their own tax dollars helped pay for the drugs they are stressing over trying to pay for now.
PACE and Patient Assistance
This recent study out of MD Anderson reminds me of the PACE Cancer Perception Index, a public opinion farce conducted by Lilly Oncology and published in 2013. In it, Lilly informed us that the top three fears among the public regarding a cancer diagnosis were:
- 1. the effect it would have on family and friends
- 2. the fear of dying
- 3. the fear of being unable to pay for treatment
A single percentage point separated 1 from 2 and 2 from 3.
The strange thing about PACE is that the authors appear to lack the insight to see that Lilly Oncology and others are part of the problem, a problem that contributes to all three of those fears.
Enter patient assistance programs, which are meant to bring cancer patients and cancer drugs together for ostensibly less money than if they were to come together without these programs. Ah, but as any cynic can guess, few of these programs are independent; in fact most of them are run by Pharma.
In July 2014 I wrote about finding financial assistance for cancer medications and mentioned one of these programs, known as RxHope. At the time, their website featured the following outrageous copy:
"More people than ever before desperately need relief in getting the critical medications that they depend on. Proud, hard working people often never thought that they would have to seek assistance in paying for these medications … Proudly it is the pharmaceutical industry that comes to the rescue."
Someone at RxHope must have realized that this paragraph was an embarrassment. It has been revised; permit me to break it down:
"Never before has there been a need for millions of people to have an advocate and facilitator in getting their medications for free or at a small co-pay."
Never before when? It's been this way for decades.
"RxHope is just what the doctor ordered."
Actually, doctors don't know what to do to help patients stressing over the financial costs of their cancer care. The authors of the MD Anderson study wrote that "The vast majority of the instruments aimed at determining symptom distress and quality of life do not include a financial distress item." That said, RxHope is not what the doctor ought to order at all; he or she ought to use the 11-item questionnaire known as COST (Comprehensive Score for Financial Toxicity) developed by doctors from University of Chicago Medicine.
"As an integral part of the Triplefin group of companies, we are a highly professional team of caring and concerned people dedicated to making the patient assistance process as easy and comfortable as possible for the patient, the healthcare provider and the pharmaceutical company."
In trying times such as these, it is a blessing to know that RxHope makes this whole awful process more comfortable for the pharmaceutical company.
"It is not by accident that RxHope is the largest independent web-based patient assistance resource, processing, fulfilling and tracking the requests of our fellow American’s in need."
That apostrophe in "American's" is poor grammar you dumbsh*ts.
The Good News
The good news is that the tide appears to be turning, if ever so slightly. The first truly major blow came from doctors at Memorial Sloan-Kettering in 2012, who wrote an op-ed in the New York Times saying that they refused to prescribe a newly approved drug for colorectal cancer called Zaltrap because it cost $11,000 per month and, in my words and not theirs, it was a piece of shit that offered no improvement over existing treatments.
This was unprecedented. And it brought the issue the kind of attention it really needed. Most recently, the American Society of Clinical Oncology released the framework for a method of determining the value of new cancer therapies that is based on its benefits, its toxicities, and its cost. The ASCO Value Framework will allow doctors and patients to use data on cancer drugs to determine if they're worth it. The current model for reaching that determination is dysfunctional because there is no current model.
Executives at Pharma are stressing over the potentially devastating financial ramifications of the ASCO Value Framework. They shouldn't worry; the overwhelming majority of cancer treatments they bring to market every year barely make a dent in cancer, much less actually bring about a cure. By making products that fail to adequately treat cancer but succeed at preying on hope and fear, they keep their market intact, and should keep themselves in solid financial shape for years to come.