Our Experience on Facebook Offers Important Insight Into Mark Zuckerberg’s Future Vision For Meaningful Groups
By ANDREA DOWNING
Seven years ago, I was utterly alone and seeking support as I navigated a scary health experience. I had a secret: I was struggling with the prospect of making life-changing decisions after testing positive for a BRCA mutation. I am a Previvor. This was an isolating and difficult experience, but it turned out that I wasn’t alone. I searched online for others like me, and was incredibly thankful that I found a caring community of women who could help me through the painful decisions that I faced.
As I found these women through a Closed Facebook Group, I began to understand that we had a shared identity. I began to find a voice, and understand how my own story fit into a bigger picture in health care and research. Over time, this incredible support group became an important part of my own healing process.
This group was founded by my friends Karen and Teri, and has a truly incredible story. With support from my friends in this group of other cancer previvors and survivors I have found ways to face the decisions and fear that I needed to work through.
As news of Tom Brokaw’s cancer diagnosis spreads, so does his revelation that his cancer treatments cost nearly $10,000 per day. In spite of this devastating diagnosis, Mr. Brokaw is not taking his financial privilege for granted. He is using his voice to bring attention to the millions of Americans who are unable to afford their cancer treatments.
My patient Phil is among them. At a recent appointment, Phil
mentioned that his wife has asked for divorce. When I inquired, he revealed a
situation so common in oncology, we have a name for it: Financial
Toxicity. This occurs when the burden of medical costs becomes so high,
it worsens health and increases distress.
Phil, at the age of 53, suffers with the same type of bone
cancer as Mr. Brokaw. Phil had to stop working because of treatments and
increasing pain. His wife’s full time job was barely enough to support
them. Even with health insurance, the medical bills were mounting. Many
plans require co-pays of 20 percent or more of total costs, leading to insurmountable
patient debt. Phil’s wife began to panic about their future and her debt
inheritance. In spite of loving her husband, divorce has felt like the only
solution to avoiding financial devastation.
I read the report of a phase 3 RCT of a “new” breast cancer drug but I had the feeling that I had already read this before. Later I realized that this was indeed a new trial of a new drug, but that I had read a very similar report of a very similar drug with very similar results and conclusions. This new drug is a PARP inhibitor called talazoparib and the deja vu was related to another PARP inhibitor drug called olaparib tested in the same patient population of advanced breast cancer patients with a BRCA mutation. The control arms were the same: physician choice of drug, except that physicians couldn’t choose the one drug that is probably most effective in this patient population (carboplatin). The results were nearly the same: these drugs improved progression-free survival, but didn’t improve overall survival. In another commentary, I had raised some questions on the choice of control arm, endpoint and quality of data about the olaparib trial when it was published last year. This current talazoparib trial is so similar to the olaparib trial that you can literally replace the word “olaparib” with “talazoparib” in that commentary and all statements will stay valid.
The oncology version of half-full, half-empty glass
The PARP inhibitors olaparib and niraparib are also approved in ovarian cancer based on improvement in progression-free survival (PFS), without improving overall survival (OS). If a drug doesn’t improve OS but improves only PFS, it should also improve quality of life to justify its use. According to two new reports, these drugs do not appear to improve quality of life. The niraparibtrial reported that the patients were able to “maintain” their quality of life during treatment while the olaparib trial reported that olaparib did not have a “significant detrimental effect” on quality of life. I find it remarkable that a drug that isn’t proven to improve survival is lauded for not significantly worsening quality of life … at $10,000 a month!
It is also important to recognize that these drugs were tested as maintenance therapy against placebos. For “maintenance therapies,” as explained in this paper, improving PFS alone is not an important endpoint. That’s why I am also not excited about this new trial of sorafenib maintenance in ovarian cancer. A drug has to be very ineffective to fail to improve even PFS as a maintenance therapy against placebo. Continue reading…
I want to tell you about the most exciting discovery I’ve made in 2+ years of research on dose individualization methods for phase 1 cancer trials. This discovery has nothing to do with any of the technical problems I’ve confronted and solved along the way. It involves no gigantic equation, no table of simulations results, and no colorful plot. Rather, it’s a discovery about sources of power to innovate in drug development.
In general, how would you describe the balance of power between Big Pharma and the individual patient? The question seems ludicrous—maybe even offensive—in light of ongoing scandals with price-hikes and shortages for critical drugs. But in the special area of trial methodology, I’ve got a real surprise for you…
One result from my DTAT research has been a clear demonstration that 1-size-fits-all dose finding in phase 1 cancer trials can cut the value of a drug in half, or even drop it to zero by setting the drug up for failure in phase 2 or 3. Although this economic argument has never been made quite so explicit and rigorous, I am certain the underlying principle comes as no surprise to anyone. (I note hardly anyone bats an eye when I detail the math.) Continue reading…
In 2014, the majority of international health aid was dedicated to HIV. So, one might reasonably assume that this is the largest health problem facing the world. Yet, HIV only constitutes 4% of the global burden of disease. In 2014, noncommunicable diseases (NCDs) made up 50% of the entire disease burden, but only received 2% of all global health funds.
The disease burden of NCDs is fast outpacing that of infectious diseases. Despite this, the proportion of global health financing dedicated to combatting NCDs has remained constant over the past 15 years at 1 to 2%.
Currently, 32.6 million individuals are living with cancer (diagnosed in the last five years). In 1970, 15% of new cases were in low- and middle-income countries. In 2008, 56% were in low- and middle-income countries. By 2030, this proportion is expected to be 70%. So, not only is the burden of NCDs rising globally, but it is also beginning to disproportionately affect countries with the least resources to deal with them.
But, if NCDs have been steadily increasing in low- and middle-income countries, why has global action not followed suit? Continue reading…
“That depends,” his doctor says. “What insurance do you have?”
New research suggests that conversations like these may be actually taking place across the country. Todd Pezzi and colleagues analyzed a national database for treatment outcomes for patients with limited stage non-small cell lung cancer, a diagnosis with high rates of response to treatment. The results, reported in JAMA Oncology last week were astounding: patients with Medicare, Medicaid, or no health insurance received different, and often worse, care than those patients with other types of health insurance. These patients were less likely to receive radiation therapy in addition to chemotherapy, part of the standard of care treatment. And they found that patients with Medicare or Medicaid were significantly less likely to survive their cancer than their counterparts with private insurance.
Clearly, the health insurance system is broken if different insurances determine what treatment a patient will get, even when there is a proven standard of care. Forcing patients and doctors to continue under what has been famously referred to as the patchwork quilt of our healthcare system is leaving people out in the cold.
These findings should alarm anyone who may be a patient one day – which, of course, is everyone. For me, a resident in internal medicine, the findings are also disquieting and discouraging. It’s frustrating to think that the best and most evidence-based treatments I spend many hours per week learning about may not even be available for some of my patients. I worry about being a part of a healthcare system where science and ethics take a backseat to billing groups.
I’m a pediatric oncologist, but cancer is not always the most serious problem my young patients face. Currently one of them, a 14-year-old boy, his mother, or both may be opioid addicts. I may be enabling their addiction.
Tragically, their situation is not unique. Adolescent patients are at risk for addiction from opioid pain medications just as adult patients are. But pediatric patients are overlooked in this war against opioid addiction. No policies protect them or those caring for them.
Usually pain is short-term, and only limited opioids are needed. Most providers, including those caring for children, are trained in acute pain management. Patients and providers are also protected by policies limiting the prescribed amount of opioids for acute pain.
It’s been a while since I put a piece of writing in the public domain, but suddenly I have a lot to get off my chest, well my colon actually.
Just three weeks ago life was good. Correction. It was awesome. The newest edition to our family had arrived on Christmas Eve, joining his two sisters aged 5 and 3. A month later we were on a plane home to Sydney, having spent four great years working for Google in California. My beautiful wife had been working at a startup on NASA’s Moffett campus and was worried about finding something equally interesting in Australia, but she managed to land a very similar gig with an innovative logistics start-up in Sydney. We’d come back primarily to be closer to family, but also to pursue a dream of setting up a family farm in partnership with my parents — intended as a great place to bring up our three kids but also as a new sideline income stream. We’d spent every weekend scouring Sydney for areas that met our criteria (good schools, commutable, cost of land etc) and we were settling on Kurrajong in Sydney’s west. I was just getting into a training routine for the CitytoSurf run having done the Monteray Bay half marathon a few months prior.
I’m 35 years old.
On July 19th I went for what I thought would be a routine GP visit. In my mind it was primarily to re-establish a GP relationship in case my kids needed an urgent care visit (the practice is literally around the corner from our place). I’d also noticed a bit of unusual bleeding from, well, my back passage and very recently a change in bowel habit. I wasn’t alarmed by either of these symptoms but my GP was concerned enough to refer me for a colonoscopy. So began the roller coaster.
As the White House continues to push for a revised Republican proposal to replace the Affordable Care Act (ACA), one thing is for certain, many of the sickest Americans will continue to suffer as they are denied medications and other treatments under current health insurance strategies to save costs.
Both the ACA, and the recently proposed MacArthur Amendment, do not address a well-established practice of health insurers’ use of restrictive prior authorization requirements to deny or delay coverage of medications and treatments to seriously ill patients. In my own practice caring for cancer patients and those with terminal conditions, I have witnessed the additional suffering caused by denying these patients timely access to medications for pain.
A prior authorization is essentially a check run by insurance companies or other third party payers before approving certain medications, treatments, or procedures for an individual patient. Insurance companies justify this practice as a means to save costs to consumers by preventing unnecessary procedures from being covered, or requiring generic drugs to be used instead of brand-name, more expensive alternatives.
Q: Donald Trump’s campaign for the presidency included a promise to repeal “Obamacare” in its entirety. If he succeeds in fulfilling that promise, what impact can we expect on American cancer prevention and cancer treatment?
A: Donald Trump, emboldened by eliminating ISIS, ending illegal immigration and energizing the economy, will eradicate cancer. Or at the very least, I predict, he will append it to his list of promised achievements as president.
A candidate whose campaign centered on his personal pledge to “make America great again” will surely be galvanized by the chance to make cancer care “great,” too.
The current Cancer Moonshot initiative, featured in President Barack Obama’s last State of the Union Address, is codified in a presidential memorandum of Jan. 28, 2016 and placed within the Office of the Vice President. While fighting cancer was of deep personal interest to Vice President Joe Biden, Vice President-elect Mike Pence was governor of Indiana, where pharmaceutical giant Eli Lilly has a major portfolio of oncology products. Coincidentally, Lilly in October introduced a new version of its PACE Continuous Innovation Indicator (CII), a customizable, online tool to review progress against cancer in order to inform public policy and accelerate innovation.