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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.

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.

Dec 26 2008

Cancer for Christmas – One Year Later

By cancer

I had my annual mammogram this last Tuesday – remembering how last year’s formerly routine event wound up, to say I was a little nervous is a vast understatement.

Here’s the news: I’m now officially a survivor.

Looking back at the last 372 days, I have to say it’s been quite a ride. So many people have helped me, have lifted me up, have kept me from feeling that terrible aloneness that’s part of fighting a life-threatening disease.

‘Thank you’ sounds inadequate, but it comes from the deepest and most tender part of my heart.

I will finish the first draft of “Cancer for Christmas” by New Year’s Day. Then it’s on to finding an agent, a publisher, or – best of all possible worlds – both. I’ll be reaching out to Save the Tatas and the Susan G. Komen Foundation, offering them a piece of the cover price in exchange for helping promote the book once it’s published.

My goal is to help anyone in the fight – against cancer, or any other life-changing disease – navigate the medical car-wash and manage their medical care for their benefit.

Because if you don’t, no one else will.

2008 has been quite a journey. I’m in an incredibly wonderful place, which I don’t know that I would recognize had I not had my dance with the Cancer Troll.

2009 is already a mortal lock for my best year yet – I wish you the same!

Dec 16 2008

Pay No Attention to the Man Behind the Curtain (If You’d Like to Stay Blissfully Ignorant)

By cancer

I lost my health insurance the other day – and I’m not going to look for it.

I have reason to be very glad this didn’t happen last year, given the cancer-for-Christmas gift I received at my mammogram last December.

Now that I’m in the self-pay column, I called the imaging practice where my next mammogram will take place to ask what the cost would be.

I have seen Explanation of Benefits (EOB) statements from my insurer – when I had one! – that listed the above-the-line cost as $600 to $1,000. Then there was the ‘negotiated discount’, and the other horse-trading hand signals that brought the cost down to around $350, which the insurer then paid the doctor.

Every EOB I’ve ever seen had this sort of dance on it – high initial cost, the insurer does a ‘look what a great deal we got for you!’ discount jig, and hey-presto, the final price is reduced by 50%-or-more.

So, when I called the imaging center, I was bracing myself for sticker shock.

I did get sticker shock, but in the other direction – a screening mammogram is $135, a diagnostic mammogram runs $120-$180, and ultrasound, if necessary, adds another $75.

Meaning the worst-case cost scenario is….$255.

Mention health care in any circle, and you’ll hear cries about costs spiraling out of control, of doctors who lose money seeing HMO patients, of hospitals taking it in the shorts on equipment and supply costs, of patients paying $200 for an aspirin (I guess that’s ’cause a nurse delivered it in a little paper cup?), of that last week of dad’s life when his hospital bill hit $100K.

Here’s a question – could it just be because of managed care that costs have managed to careen out of control?

I’m old enough to remember that, back inna day, you went to the doctor and paid for your visit on the way out.

If you had a prescription, to went to the pharmacy and got it filled…and paid for it.

Needed lab work? You went to the lab, and paid the bill when it arrived.

You had insurance coverage against the day – which you hoped to avoid – when you’d have to go into the hospital.

Here’s a suggestion for Tom Daschle, and the incoming Obama health care team: you don’t need to invent a new system. Just go old-school, and add technology to it. Give consumers control not just over their care, but its cost.

When you’re in the exam room with your doctor, thanks to managed care that’s you, your doctor, and fifty people you can’t see involved in decisions about your medical care.

That’s fifty people who all want their ‘taste’, who add their cost – for administration, for oversight, for just taking up space in the transaction – to the cost of the actual visit.

That’s the first way to attack cost – admit that the Great and Powerful Oz, the whole ‘managed care’ monolith, is really just a venal clerk behind a curtain who’s inserted himself into the medical care system.

Putting patients back in control of their own medical care – really – would not just help control costs, but it might also drive actual patient ownership of their health. Now there’s an idea.

So here’s a suggestion – kill managed care. And don’t have a funeral.

That’s my story, and I’m stickin’ to it…

Oct 11 2008

The Story on Breast Cancer Awareness Month, Nail Color, and Life in General

By cancer

Below is something that my good friend Mary Foley sent out to her Live Like Your Nail Color Club this week. First, let me say this: Grrlz, get your mammograms. Guyz, encourage the women you love to get their mammos. Trust me, it’s a very good thing.

Also, check out Mary’s radio show with Susie Galvez, Girlfriend We Gotta Talk, on Thursday, Oct. 16 at 5:30pm Eastern on WHAN 1430AM in Ashland VA – or as a podcast on the GFWGT website starting on Friday, Oct. 17 – to hear me talk about how a mammogram saved my life when I got cancer for Christmas last year.

Another thing I gotta say: Mary has been one of the MVP’s on my Fight-Cancer team. Bodacious, bold, and fierce. She’s the shizzle, all that and a bag of chips, the whole nine yards, and so much more.

OK – here’s Mary’s message:

Hey – are you familiar with my 4 steps for
doing your nails and living like your nail color?

Today I was thinking about STEP 1.

STEP 1 is called “Preparation” because before you put on new finger or toe nail polish you have to prepare your nails. Take off old polish, trim, file, maybe do a little exfoliation to clean up your cuticles.

Bottom line is that you’re getting back to your naked nails. It’s a great time to reflect on your true, authentic self. So many women put themselves down one way or another. Truth is there’s some really good stuff inside each of us, if we allow ourselves to remember.

To shift from criticizing yourself to recognizing the good stuff, I recommend you ask yourself a simple question while you’re preparing your nails for new polish:

Ask Yourself — > What’s 1 thing I’ve done recently I feel good about & why?

Maybe it’s an act of kindness like calling a friend who had a tough day. Maybe it’s an act of courage like saying “no thanks” to another volunteer activity that will put your sanity on “tilt.”

Take a moment to answer this question. I’m sure you’ve done a thing or 2 to feel good about. Let the good feelings wash over you. Your actions may seem small, but they are powerful reflections of your true, authentic self.

I was thinking about STEP 1 today and my heart is jazzed about my answer to that question.

You can imagine how much of a kick I get out of each nail polish color I create for the Live Like Your Nail Color Club. This month’s color is extra special.

It’s a peachy-pinkish color called “Mammo Mango” I co-created with my friend Casey Quinlan. Mammo is short for mammogram, that test we love to hate, but one Casey has learned to love.

Because it saved her life.

Truth is, if she didn’t get her annual mammogram last December and if she didn’t take charge of her treatment she might not be alive today.

I’m soooo admire how Casey courageously set out to banish cancer from her body. After surgery, chemotherapy, and radiation treatment, the fight isn’t over but she’s winning!

So, I asked her to co-create “Mammo Mango” nail polish. And, I captured her story and put it on a CD. I’m sending one of each to every member of the Live Like Your Nail Color Club this month in their Oct Goodie Package.

We’re celebrating the power of a mammogram, the power of taking charge of your own health, and the power of the human spirit.

Here are 3 ways you can celebrate with us!

1.  Go get your annual mammogram!

Just do it!  Celebrate if you don’t have any problems. Gather your family and friends together for support if you do.

2.  Join the Live Like Your Nail Color Club and put on some “Mammo Mango” polish. Be inspired by Casey’s story. Be proud that you’re in charge of your health.

A 3-month Mini-Membership is only $39, which is small on price but big on increasing your sanity, confidence and fun.

Bet you’ll laugh at the nail color names I created for Nov & Dec.  Check ’em out here:

Live Like Your Nail Color Club

3.  Completely Brand New!  Give a Gift Membership to the Club to a friend.

Someone who is battling breast cancer, someone who won the fight, or someone you know who needs a boost.

Choose between a 3-month Mini or Annual Membership, which includes a bonus Starter Kit with 2 more fun polishes, base coat, top coat, nail file, and toe separators.

I’ll send them a card bragging on you and welcoming them to the Club.  😉

Look for the wrapped presents to click on here:

Give the Gift of Living Like Your Nail Color!

~~~~~~~~~~~~

OK – that’s my story (and Mary’s)…and we’re both stickin’ to it!

Mar 30 2008

Beeting Up On Oneself

By cancer

beets and greens photoAs a person participating in the fun-filled romp known as chemotherapy, your ‘umble correspondent has been able to make all sorts of wonderful discoveries.

There was “anorexia”, wherein our heroine was introduced to the practice of picky eating. Not something she had been familiar with previously, at all.

There was “chemo brain”, wherein she learned just how stupid “dumber than a box of rocks” really was. Is. Whatever.

Today, she learned that the two can be combined in new and interesting ways.

Say, f’rinstance, one learns that one’s blood is dangerously low in something called neutrophils – due to the aforementioned chemotherapy’s Sherman-like march through one’s bloodstream toward whatever cancer cells might have the temerity to remain within one’s corpus. (Note – there ain’t none, one just has to run the bases, like any other home-run hitter.)

One reads up on neutrophils, and white blood counts, learning that a diet rich in beef, cooked mushrooms, and red/orange/yellow wegetables is just the ticket for getting that neutrophil level back up to the mark that will prevent our heroine from getting hit with Neulasta. That being the drug used to hammer one’s marrow into manufacturing neutrophils, while also apparently causing bone pain – IOW, not something our heroine is inclined to entertain the deployment of, since she’s got entirely enough chemicals runnin’ ’round her veins, thank you very MUCH.

Anywise, the thought of some yummy beets seems like a good thing, and she hits the local Kroger in search thereof. What ho! Organic beets! With greens on top! On Wednesday, the beets are steamed and enjoyed, with a steak and sautéed ‘shrooms. Yum. She feels better already.

The greens were left in the weg crisper, and today’s lunchtime seemed like just the time to wilt ’em, butter/salt ’em, and get outside ’em. So she did.

Oh – has it been mentioned that a regular side effect of chemo involves the, um, acceleration of elimination of the alimentary sort?

We think she set some kind of land speed record around the time from beet-green ingestion to beet-green removal. The old aphorism about what goes fast through a goose came to mind.

Beet feet, indeed.

The things one learns when one isn’t paying attention.

That’s my story, and I’m stickin’ to it…

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