cancer

May 27 2019

Surprise medical bills = stress on blast

By admin cancer, e-patients, healthcare industry, healthcare price transparency

In case you missed it, getting a Really Big Diagnosis like, say, cancer, is a big whack to the wallet. Even if you have titanium-plated insurance (spoiler: there is no such animal in the US healthcare payment system), there will be bills for many, many things. If you have a deductible, be prepared to build a spreadsheet matrix with complex algebra to calculate how much of what care will be on you. If you have co-insurance – your spouse’s employer coverage, for instance – that’ll add complexity to your algebra. It’s a lot. In a piece on the Discover credit card and financial services blog, recent Cancer Club inductee Kris Blackmon lays out how unexpected medical expenses impact people dealing with a Really Big Diagnosis, or any ongoing health issue that requires lots of clinical care – and therefore medical bills – offering a solid strategy for dealing with those bills. Do your research Talk to your clinical team’s billing office in advance about what your options are under your coverage plan. You’ll have to do this with each provider and facility you’ll receive care in – Blackmon says she chose to be treated at a major academic medical center because of the one-stop care coordination available in a comprehensive care setting. Ask all the questions If you’ve been hanging around these parts for any length of time, you know I’m all about being your own best advocate when getting medical treatment. Kris Blackmon puts mustard on that ball by recommending that, even if you wind up in the emergency department (which can totally happen during cancer treatment), you ask to speak to the billing department rep in the ED before any treatment is ordered, or delivered, so you know what your options are, and what the bill might be for them. Read the…

Jul 24 2016

Patients are Pigs? Wow. Thanks, Medrio!

By admin cancer, e-patients, healthcare industry, participatory medicine

The infographic below popped up in my Twitter feed when an e-patient colleague from the multiple sclerosis community tagged me with a “what the HELL is this!?!” … and the excrescence below. Let me set the scene for you – this is digital collateral from a software company, Medrio, that on its website landing page says it provides “simple, fast, and affordable tools for the collection of data in clinical trials.” It appears that the company is all about the cartoon animals, since they’ve got a cartoon cat in a lab coat welcoming you to their digital litter box domain. It also appears that Medrio is happy to think of clinical trial subjects – you know, the ones called “patients,” or, alternatively, “people” – as sus scrofa. If you don’t speak Latin, that’s the species classification for … PIGS. This points up a pernicious, perpetual problem in too many precincts in healthcare. People/patients are seen either as dumb – possibly even dumb animals – and treated with the same level of respect. It’s not often, though, that an organization that actually thinks of patients this way fully uncloaks, and shows their wrong-headedness in full color. OK, you’ve waited long enough. The infographic I’m talking about is pasted below. PLEASE make some very loud noise online, show the world that this jerkbaggery will not stand.

Apr 12 2016

An open letter to Pres. Bill Clinton

By admin cancer, e-patients, healthcare industry, politics

Dear Bill, I think I can call you Bill, since we’ve known each other since early 1989, the first time I actually met you, at the Democratic Governor’s Conference at the Franklin Institute in Philadelphia. Oh, you don’t remember me? No surprise, I was buried in the front row of the press gaggle, helping cover the meeting for the Today Show. I continued to cover you – on the campaign trail in ’92, at Madison Square Garden when you were nominated, and throughout your 8 years in office, including l’affaire Lewinsky – for years. So we’re blood, brother. This morning, I read a piece in MedCityNews about your $630K in speaking fees for two appearances, in 2013 and 2014, at the World Patient Safety, Science and Technology Summit in Dana Point, California. My head exploded. You see, I have myself been working for years on transforming the healthcare sector into something that serves humanity, not corporate bottom lines or C-suite ivory tower dwellers. I’ve been doing this based on my direct experience, as a family advocate and caregiver for two members of the Greatest Generation, and then as my own advocate through cancer treatment. I know how screwed up the US healthcare system is. I also, thanks to the fact that I’ve been (a) loud and (b) indefatigable, know that the global healthcare system ain’t exactly all beer and skittles, either, but the US system is particularly remarkable in its ability to strip off $3-trillion-with-a-T in revenue every year, in exchange for serving up 11th place in the global Top 10 of healthcare system quality. As I mentioned, my head exploded at the $630K speaking fees you received for keynoting at the World Summit over two years. You see, I get invited to all sorts of national healthcare system transformation shindigs, often to appear on the platform myself, usually…

May 07 2014

What’s in a Bowl of Rice?

By admin cancer

This is a guest post by Patricia Dean-Escoto, a nutrition coach and consultant who learned, in her own cancer journey, the impact of food on cancer prevention – she’s got a new Android app, My Breast Cancer Advocate, that’s available in the Google Play store. The other day I was visiting with a good friend of the family. She had just flown in from Nigeria for a three-week stay and had come to Delaware to stay for a while. We got on the topic of the poor in countries like Africa, the commercials you see for helping to feed them, and reality of what donated money really supplies in the way of actual meals. My sister asked her what a dollar a day would actually do. The answer was just what you see on the TV. A dollar would feed them a bowl of rice, maybe three times a day. This bowl of rice would not contain any vegetables, nor would it have any source of protein like beef or chicken. For that, you would need to be in the range of $3 per meal. We see these images of starving children, eating just that, a simple bowl of rice. Unfortunately, these types of ads give you the impression that the bowl of rice you see that small child eating can save their lives. It gives them not only nourishment, but hope. Fast-forward to an article I came across in the New York Times while traveling to my conference in Tucson a couple of days later. The article was about, wouldn’t you know it, rice! But, it wasn’t one of hope, nor of nourishment. In fact, it was just the opposite. According to recent studies, rice, in addition to being a simple carbohydrate that easily breaks down to glucose in…

Jan 08 2014

Deja vu all over again

By admin cancer, healthcare industry

Long ago and far away … well, OK, from 1979 to 2008, I had health insurance. Started with employer group insurance, moved to rolling my own (individual) in ’89, then negotiated small business group insurance for the micro-enterprise I ran with my 2nd husband in the ’00s. Then came the Cancer for Christmas adventure, during which I had insurance (still deeply grateful for that), but at the conclusion of treatment when I got to become a Friend of NED (No Evidence of Disease) I got a jack-you notice from my insurer. All of these stories are already available for your delectation all over the interwebs: Here. Here. And here. For starters. In my five years sitting on the Group W bench known as “uninsured,” I became an advocate for price visibility in healthcare. Since I was paying my own way, I needed to know before making a medical purchase. Other more high-profile folks have joined me on the quest for answers to “how much is that?” See my thoughts on that here. So along comes the Affordable Care Act, also known as Obamacare, to help me get back in the game.

Dec 12 2013

Myriad Finds a Myriad of Ways to be Total Trolls

By admin cancer, e-patients, healthcare industry, participatory medicine

As the author of a rabble-rousing call to action, with a heavy dose of humor, on managing medical care called Cancer for Christmas, I have some street cred on both cancer and on dealing with tough personal health conversations over a Christmas standing rib roast dinner. My hair has been on fire since I heard that Myriad Genetics had patented genes, back in the previous millennium. First, how in the pluperfect f^ck is a naturally-occurring part of the human body – microscopic or not – patentable?? Second, why is a commercial enterprise allowed to dictate scientific research at a university? If they’re funding it … maybe. If they’re trying to prevent it from moving forward? What. The. F^CK? I expect crass commercialism at Walmart. When it comes to cancer research, a primary profiteering motive should be a capital offense. Yep, off with their heads, baby. It recently came to my attention, thanks to my buddy BraveBosom‘s tip-off … Myriad created campaign: “Make hereditary cancer a holiday centerpiece.” Spamming #BRCA and #BCSM. http://t.co/PrC0E3rIeK — Brave Bosom (@BraveBosom) December 19, 2013 … that the trolls at Myriad Genetics are up to newer, stinkier tricks: “helping” us make cancer a holiday centerpiece! Hey, Myriad, here’s a tip: WE DON’T TRUST YOU. You’re trolls. Support from you? I’d sooner eat dinner with Hannibal Lecter. If you haven’t heard of Myriad Genetics, here’s the Cliff’s Notes version: Founded in Salt Lake City in 1992 by, among other names, a Nobel Prize winner in chemistry, Walter Gilbert In 1997, Myriad is granted a patent on BRCA1 (one of two genes that indicate high risk of breast and ovarian cancer) In 1998, Myriad is granted a patent on BRCA2 (2nd of two breast cancer risk genes) BRCAnalysis, the company’s genetic test for breast cancer risk, costs $4,000 (you can get an entire genomic sequence for less than that – the Myriad…

Jul 24 2013

“How much is that?” is a critical question in healthcare

By admin cancer, e-patients, healthcare industry, healthcare price transparency

This story from PBS Newshour clearly shows how important it is to ask questions, and shop around, when it comes to prescription drug prices. Think a generic drug guarantees a lower price? Not so much. Watch this story, and learn how the same generic drug can cost anywhere from $11 to $455. The best way to get the lowest price? The same way you shop for shoes, or appliances: research online, ask local retailers, and make an informed decision.

Apr 05 2013

Medicine has a major image problem

By admin cancer, healthcare industry, healthcare price transparency

When you hear the word “monopoly,” does it fill you with a warm and fuzzy feeling? (Unless you’re Hasbro, you really should say no, unless you’re a cyborg.) Healthcare is a monopoly. We can’t DIY cancer treatment, or surgically repair a broken hip for ourselves, so we have to go to the medical-industrial complex to regain our health if we wander into the weeds, health-wise. We also have deep difficulty accessing pricing information. I’ve talked about that hereand in even more depth on the Cancer for Christmas blog over the last few years. This “chaos behind a veil of secrecy” (all credit for that phrase belongs to healthcare economist Uwe Reinhart) has created the impression in healthcare customers that there’s no way to tell what something will cost before you buy it. You checks the box and takes yer chances. That’s a rotten way to run a railroad (one of the original monopoly industries in modern history), and an even worse way to run a hospital. Dan Munro wrote about this, and the star-chamber cabal that actually sets the prices in healthcare, the RUC, on Forbes.com yesterday. I’ve talked about the RUC myself. And the search for price transparency, which seemed such an outlier activity just a couple of years ago, is now popping up in the Well blog on the New York Times site, as well as on Reuters. The Reuters piece has the addition bonus of quotes from my buddy Jeanne Pinder, founder of ClearHealthCosts.com. (Yesterday was a big day in medical price transparency.) This is the central reason I registered the hashtag #howmuchisthat with Symplur, the healthcare hashtag registry. We all have to start demanding that prices be visible, and that the RUC stop cabal-ing around with our lives and our wallets. As more and more people are finding themselves with high-deductible health insurance, asking how much things cost before you…

Apr 09 2012

#HAWMC Day 9: Keep Calm

By admin cancer, e-patients

This says it all:

Apr 07 2012

The Checklist

By admin cancer, e-patients, healthcare industry

This document has its own page on the site as of yesterday, so I thought I’d take advantage of #HAWMC to pimp it toward the e-patient and health activist community. It was debuted during my talk “Dating Tips for Doctors & Patients” for internal medicine grand rounds at Walter Reed/Bethesda Naval Hospital on March 29. I put the Checklist together because (a) I know how much clinicians love a checklist and (b) because, printed front-and-back on one sheet of paper, this document could kick off some great relationships, or repair broken ones, between doctors and patients. Share it, share your thoughts about it. Checklist-for-Clinicians-+-Patients