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May 27 2019

Surprise medical bills = stress on blast

By 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 fine print

Yeah, yeah, “nobody reads the Terms and Conditions,” but when you’re getting medical treatment … YOU GOTTA READ ‘EM, KIDS. Reading all of each bill, and lining it up with your health plan coverage, can unearth errors and fact-check the bills you need to pay to meet your deductible. By the way, did you ask if all the clinicians delivering your care were in-network in the previous section? If not … SURPRISE! And not the fun kind with confetti and cake, the not-fun kind with you being on the hook for their charges, thanks to something called balance billing.

infographic medical expenses affect just about everybody

Think it’s just you? Nope. It’s all of us.

Social Workers and Other Organizations May Help You Manage Expenses

When I was dealing with my own Cancer Year, I not only served as my own care coordinator, I was also my own social worker – I was handed a resource sheet by my surgeon’s NP, and then worked the phones and web on my own behalf to find ways to pay the bills that were piling up, as well as the living expenses ditto. Cancer treatment is expensive, and it’s also exhausting – if you have to keep working (which I did) to keep the wheels on your life from falling off. Most hospitals and large health systems have social worker staff to help folks navigate resource options – use them!

What to do? Here’s how others managed.

There’s more!

I’ve shared the highlights of Kris Blackmon’s post on the Discover blog – read the whole thing here. Need some help? Reach out to me here. It takes a village to manage medical care – getting it AND paying for it. Happy to help if you need it.

Jul 24 2016

Patients are Pigs? Wow. Thanks, Medrio!

By 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.

medrio patient-pigs infographic

Apr 12 2016

An open letter to Pres. Bill Clinton

By 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 as part of a panel. My voice apparently has some sort of value, since the invitations keep rolling in for me to share my perspectives on how to fix our fractured, unsafe, crazy-train healthcare delivery system.

However, I’m not paid in high-dollar speaking fees. I’m usually paid in warm handshakes, cold bagels, and occasional airfare. In other words, I’m working as what amounts to slave labor a volunteer in service of transforming a system that, as I mentioned, manages to suck up $3T/year (20+% of US GDP), and still manages to kill somewhere between 200,000 and 400,000 people a year through preventable error.

So here’s my pitch. I invite you to contribute $630,000.00, in whatever split you choose, to the Society for Participatory Medicine and the Lown Institute’s RightCare Alliance.

The Society for Participatory Medicine is dedicated to “a model of cooperative health care that seeks to achieve active involvement by patients, professionals, caregivers, and others across the continuum of care on all issues related to an individual’s health. Participatory medicine is an ethical approach to care that also holds promise to improve outcomes, reduce medical errors, increase patient satisfaction and improve the cost of care.”

The Lown Institute is a collection of researchers, doctors, nurses, policy experts, and just plain people-patients (sensing a theme here?) that “seeks to catalyze a grassroots movement for transforming healthcare systems and improving the health of communities.” Their RightCare Alliance “is the first grassroots social movement that brings together health professionals, religious and community groups, and the public. Together we are working toward a society in which the right care is accessible by all. We believe this will be made possible through a collaborative process that engages local healthcare institutions and the community in the stewardship of resources for health.”

C’mon, Bill. It’s not like you can’t spare the $630K. Put your money where your mouth is. Those of us in the trenches are getting pretty tired of living with what we’ve come to call “#RattyBoxers syndrome.” We’ll put that cash to use making sure our ground troops can show up at the meetings where they’ll have a chance to make a real difference, at speed. Even the World Summit.

May 07 2014

What’s in a Bowl of Rice?

By 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. 

bowl of rice imageThe 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 the bloodstream, which can have an impact on your blood sugar levels, rice seems to also be a magnet for heavy metals. It has that special gift, courtesy of the way it’s grown, to attract things like cadmium, mercury, and specifically arsenic to it. We’re talking about rice – one of the most widely consumed foods in the world (and, oh, by the way, one of my husband’s favorite things to eat).

Yet, according to new research from Consumer Reports, consuming rice, even once a day, can increase arsenic levels in the body by up to 44 percent.

Where Rice can be Found

image of foods containing riceToday, rice can be found in everything from cereal to energy bars, and even baby food. In fact, because of the recent concern about gluten and gluten intolerance, rice is also becoming one of the main substitutions in a gluten-free diet for baking your favorite waffles, cookies, and cakes.

And, for all of you who say, ‘I’ll just switch to brown rice.’ It doesn’t get any better. Surprisingly, brown rice is even worse because the metals accumulate in the bran or husk and is not washed away during the bleaching process that normally accompanies the production of white rice.

In fact, according to the New York Times article, the Department of Agriculture estimates the levels of arsenic in brown rice to be 10 times higher than what is found in white rice.

Exposure to arsenic can cause a host of aliments that include: Stomach ache, nausea and vomiting, diarrhea, muscle weakness and cramping, and skin rashes. In addition, cadmium, and its associated effects on bones, have been well documented going as far back as the late 60’s.

Naturally, all of this made me think back to my conversation with my friend and what all this rice consumption was doing to the health of so many children who everyday receive only a bowl of rice for their nourishment. Rethinking how and what would feed the world could mean limiting our exposure to these toxic metals and limiting our exposure to rice.

Many other grains can be consumed that are more nutrient dense and cause a lower impact on our blood sugar levels. These include quinoa, barley, millet and couscous, all of which are readily sold in supermarkets.

To Your Health,

Patricia 

Patricia Dean Escoto photoPatricia Dean-Escoto is a certified nutrition consultant and breast cancer survivor.  She holds a master’s degree in education and has more than 20 years of experience working in both the field of education and healthcare.  In 2006, after being diagnosed with stage 2 breast cancer, Patricia returned to school to study nutrition and completed studies at Bauman College for her certification as a nutrition consultant.    Recently, she hosted a year-long radio show called Pathways to Healing on the Voice America network where she interviewed experts in the field of health and wellness.  Patricia is author of ‘The Top Ten Superfoods for Preventing Breast Cancer’ and  creator of the My Breast Cancer Advocate app which is designed to assist those who are newly diagnosed with or recovering from breast cancer.  Her company, Pathways2healing, works exclusively with cancer patients in the area of nutrition and exercise. She lectures both locally and nationally on the topic of nutrition and cancer prevention. Connect with Patricia on Facebook, on LinkedIn, and on Twitter.

Blog tour banner image

Download the app on Google Play

Jan 08 2014

Deja vu all over again

By 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 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 …

… 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 test only looks at two genes!)
  • Myriad hits research institutions with cease and desist letters to prevent their research into BRCA1 and BRCA2 genes as patent infringement (it seems they think your genes are their intellectual property)
  • The Association for Molecular Pathology files suit, challenging Myriad’s BRCA1 and BRCA2 patents
  • June 13, 2013: the Supreme Court rules against Myriad, saying that human genes are not patentable
  • Myriad starts to press legal action against other genetics companies, alleging trade secrets infringement (pre-SupCo-decision story here, post-decision story here)

With me so far? OK.

Yo, MySupport360 – your “support” would cost me how much, exactly? My liver, with some fava beans? The sticker price of an Escalade? The entire contents of my 401(k)? Given your track record for bottom-lining other people’s health risks, why the French-pressed f^ck should we trust you on anything, much less guiding health-related conversations with our families?

Your invitation to “talk about genetic testing” with our families over Christmas dinner … hell, we’d HAVE to serve up a bottomless flagon of nice Chianti to get through it, given that the “talk” (following your paradigm) would wind up with us wanting to clap a restraint mask on the faces of everyone behind MySupport360. ‘Cause sure as shootin’ you’d be picking our pockets all the way.

How much more powerful it would be if you followed the rising call for open science, backed by notable minds from 2012 ISEF Prize winner Jack Andraka to 2013 Nobel Prize in medicine winner Randy Schekman.

So get off your Scrooge train for Christmas, will ya? You low-down, dirty, rotten trolls.

cheezburger scrooge image

Jul 24 2013

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

By 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 cancer, healthcare industry, healthcare price transparency
medical monopoly image

image credit: Alec

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 make a healthcare decision will become the norm. If a healthcare provider can’t answer that question, s/he will find that s/he’s seeing the patient panel sinking fast, along with practice revenue.

Get with it, medicine. Remake your image, and your brand, to be clear as glass and user-friendly. Outcome metrics along with pricing would be really nice, too.

Mar 27 2012

Is it warm in here?

By cancer, e-patients

I’ve been quiet for a while. Been doing my one-armed paper-hanger imitation – in a good way – which has taken up too much of my time and attention.

She’s baaaaaaaaack!

And she’s almost 4 months overdue for her annual mammogram. Yep, a breast cancer survivor is late for her mammo – but it isn’t due to lack of effort on her part.

Here’s the challenge: I have the money in hand for a diagnostic mammogram. However, there is *not* enough money in hand for a specialist visit to order said mammogram. And since your (not so) faithful correspondent here has no health insurance – thank you, cancer, you rat bastard – that’s a wrap.

My frustration is magnified by my certain knowledge that the reason the mammogram has to be *ordered* is that said order means that the insurance company will pay for it when it’s billed.

Of course, since I have no insurance, that’s why *I’m* paying for the mammogram. But I can’t get a mammogram, since there’s no order for said mammogram to ensure insurance payment for same.

Crazy yet? Yep, me too. I’m also totally steamed … which is why it’s warm in here.

We have created a healthcare payment system in the US that flies in the face of logic. I’m not the only one who thinks so, either. My buddy e-Patient Dave is banging away at some of the same issues as he tries to be a responsible healthcare customer. I’m on record with what I think are some valid health payment reform suggestions over on Disruptive Women in Health Care.

And then there’s the ever-epic Jonathan Rauch article in National Journal that became an also-epic YouTube video exploring the issue “If Air Travel Worked Like Health Care”. All I have to say is … GAH!

On both the get-a-mammogram issue, and on healthcare in general. As the Supremes hear oral arguments on what’s called either Obamacare or the Patient Protection and Affordable Care Act (depending on whether you think health insurance is something we all *should* buy for ourselves), it might be time for all of us to face some hard facts.

The most basic of which is: until we start acting like customers instead of meat puppets, the healthcare delivery system in this country will be stacked against access and transparency.

With me? Think I’m nuts? Spill your guts in a comment!

Sep 21 2011

Digital Patient Bill of Rights: check!

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

A group of about 20 passionate e-patients, including e-Patient Dave his own self and yours truly, gathered around a biiiiig table on Monday in Philadelphia to talk about what an e-patient Bill of Rights might look like. I have to give a shout-out to my buddies at WEGO Health, particularly Jack Barrette, Bob Brooks, and Natalia Forsyth

e-patients imageOne conclusion: don’t call it the e-patient Bill of Rights. Since we’re talking digital healthcare, let’s call it the Digital Patients Bill of Rights. That conclusion was reached hours into the discussion, which ranged over topics from chronic conditions like diabetes, HIV/AIDS, multiple sclerosis, rheumatoid arthritis, lupus, multiple sclerosis, and fibromyalgia to acute illness like cancer.

We had about four hours to hammer out a first-principles statement, and Mark Bard of the Digital Health Coalition deserves the Cat-Herding Nobel Prize for keeping a group of vocal, passionate, diverse e-patients on task.

To lift directly from the Klick Pharma blog (Klick was one of the sponsors of the event, along with Pixels & Pills, Health Central, Care Coach, Kru Research, Radian 6, Red Nucleus, Think Brownstone, Verilogue, and a who’s who of health media sponsors):

“After an intense four hours, we were able to reach consensus on the following key messages as a foundation to a Digital Patient Bill of Rights:

  • Shared access to my data
  • Attitude of collaboration and overall respect
  • The patient is the largest stakeholder
  • Transparency and authenticity across all areas
  • Voice of the patient is a legitimate (clinical) source
  • The right to efficient communication with providers who utilize the technology that we need”

It’s a start. A damn good one. The Klick Pharma blog post also has a full list of all the e-patients who participated in the conversation. It was quite a day.

Some of my thoughts about the conversation, and the event:
  • Those dealing with chronic conditions have an even deeper need to be activist e-patients. They also have a greater level of knowledge, and can be true leaders in this on-going discussion.
  • Each healthcare consumer – formerly known as “patient” – must take action and responsibility on his/her own behalf. And not shut up until they get what they need to achieve the best health possible.
  • Having town-hall meetings across the country, inviting community members – healthy, chronic, whatever – to attend, to share, and to learn how to both be consumers of healthcare and advocates for the family members who depend on them, would be a great way to keep the ball rolling and drive wide awareness/support for empowered, engaged e-health.
  • Those of us who’ve taken a trip through the medical care car wash have a duty to share our stories, to lead, to educate, to shake up the status quo, to effect change. We get the elected representatives, and the healthcare, we deserve.

Have any thoughts on what you’d like on your Digital Patient Bill of Rights? Tell me.

It’s your health, your healthcare, your life, your choice. Exercise it.

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