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.
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 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.
Unless you’ve been living under a rock since October 1, you’ve heard that Healthcare.gov, the site where Americans can shop for health insurance, had a rocky start in life. OK, it was an epic mess.
I was one of the people who was eager to jump on the site on October 1, since I haven’t had health insurance since I completed cancer treatment in 2008. That cancer diagnosis and treatment put me in the pre-existing condition pile, which put renewal insurance premiums for my individual coverage at an eye-popping level. You can read the details on that here.On October 1, I hopped on my Mac, and surfed over to Healthcare.gov … and had the same experience everyone else seemed to be having:
image credit: forbes.com
That continued over the following seven days, with me developing a nice little flat spot on my forehead from head/desk-ing my way through many attempts per day at getting past the first step of creating a profile on the site. Even when I had completed that process of creating a profile, every time the site announced “Success! Click here to continue.” I clicked “there” and … got a blank page.
On October 8, I realized that I, and the site’s developers, might have missed something. I was using Google Chrome, my default browser, and the dominant browser across the web. Could it be that the dim bulbs that built the Frankenstein that is the Healthcare.gov site optimized the site only for native browsers? I opened Safari, and discovered that yes, they were indeed that dim, because even though the site loaded at the speed of a slug on Quaaludes, it did load. And “Success!” allowed me to continue the enrollment process. No blank pages.
I re-enacted scenes from 1995, when I would log on to Netscape to download email on my dial-up connection: open the page, hit “go,” and then make coffee. When I returned with a hot cup of joe, I’d repeat the process on each subsequent page, working in another tab while the site loaded the next page in the process. I managed to complete the entire enrollment process, save for the last “pull the trigger” step of hitting the ENROLL button, because I wanted to make sure I had the money for my first month’s premium available. Which turned out to be unnecessary, since when I did hit the ENROLL button, I got a message saying that my selected insurer would be contacting me about billing. That conversation happened a few days ago, and I’ve paid my first month’s premium.
As of January 1, 2014, I’ll have health insurance again for the first time since December 31, 2008. WIN.
Here is the upside of what I saw in my voyage through Healthcare.gov:
Premiums were a wide range, with some surprises: the lowest-premium Bronze Plan had 0% co-insurance (I wasn’t on the hook for a percentage of cost on covered services), with higher premium plans tagged with 25% co-insurance.
Here’s the thing that made me go “WTF?”:
Only the Bronze Plans are HSA-friendly. HSA=Health Savings Account, essentially 401(k)s for healthcare. Individuals can sock away $3,300/year (in 2014) of pre-tax money in a dedicated savings account for healthcare costs, with people over 55 allowed to sock away an additional $1,000 for a total of $4,300 in 2014. Since all the Bronze Plans I was offered had deductibles of $5,500 or more, with the plan I selected carrying a $6,350 deductible, it would seem reasonable – fairer? – to allow consumers to fund their HSAs annually to match the level of their deductible.
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.
I had the chance to participate in a Hangout on Air with Kathi Browne, who is the founder/moderator of the Google+ Healthcare Talk community. If you’re on G+ and in the healthcare industry, that community is one you want to join – lots of discussion on topics from healthcare policy to social media to patient safety to care quality. It’s invitation-only – if you’d like to join, hit the G+ link above and ask Kathi to add you to the community.
Last night’s (Monday, Oct. 28, 2013) Hangout on Air was a conversation with Bill Guthrie, CEO of Patients with Power, a new web-based platform for shared decision-making for cancer patients and their oncology teams that’s in beta at UCSF’s lung cancer oncology unit and also as a survival-planning tool at Cornell-Weill/New York Presbyterian’s ob-gyn onco unit.
Decision-making for cancer patients – shared, or not – is a firehose. Patients with Power does what its name promises, it gives patients access to the information they need to make an informed decision, information that’s solidly based in evidence-based medicine since it’s based wholly on National Comprehensive Cancer Network (NCCN) guidelines for cancer treatment. Bill has given me a demo of the tool, and it’s superb. He also did a walk-though last night. Give a watch/listen: //www.youtube.com/embed/FPTIjDwirDI
The firehose of amazeballs ideas and connections that was Stanford MedicineXis now over two weeks back in my rear-view mirror. That does not mean that my head has not been on fire ever since, chewing on all the data that got packed into my cranium in those three days. If you want to read a recap of the joyful noise that was those days, it’s over on MightyCasey.com.
A forest fire between my ears has flared up with this thought: all the “big idea” thinking that happens when smart people gather to talk the future of healthcare is terrific. How can that be translated, today, into actual care improvement for the average human? Not just ePatients, but just-plain-folks? How can we start little centers of excellence in a free clinic for undocumented workers in the South Bronx, or in a village in AIDS-ravaged sub-Saharan Africa?
Is there an app for THAT?
Image credit: HuffingtonPost.com
I often feel myself at the crossroads of Possible and Are You F***ing Nuts. In other words, I dream of smartphone apps that could help a little boy in Ghana avoid getting malaria. I could lose an hour wondering how an app might help a little girl in Pakistan avoid a forced marriage at 12. As I type this, I’m thinking of how the kids in the public housing projects of the small city where I live could really use some how-to-manage-your-healthcare apps they’d be able to relate to. And the smartphones to go with them, of course.
Is there an app for THAT?
The grass, and its roots, are where we all stand. Healthcare, like charity, needs to begin at home. How do we help that happen? How do we empower children, and their parents, to understand how to interact with the healthcare system when so many of them are overwhelmed by just ensuring another 24 hours of survival?
Is there an app for THAT?
Here’s what I would LOVE to see at MedX 2014 (at which I firmly intend to be in attendance): real-world, right-now ideas for putting empowerment tools in the hands of not only the privileged, and the connected, but also into the hands of children across the globe. They’re more than our future … they’re our only hope.
I had the great good fortune of being tagged as an ePatient Scholar for the 2013 edition of Stanford Medicine X. That allowed me to sit at the feet – literally, since the ePatients were the mosh-pit for the three day conference plenary stage – of some of the best and brightest minds in healthcare. And guess what? Many of those best/brightest were … PATIENTS.
(c) Lucien Engelen
MedicineX (a/k/a MedX and #medx) is the uber Patients Included medical conference. It grew from seeds planted at conferences like Health 2.0 and Patients 2.0, for which seeds-to-beautiful-flowers gardener credit goes to Dr. Larry Chu and his team from Stanford Anesthesiology AIM Lab, who seem to prestidigitate rabbits out of hats without breaking a sweat. Or the hats. Or the rabbits.
MedX – in my opinion, at least – trumps every other Patients Included event by not just including patients, but by putting them front and center throughout the program. In fact, I cannot think of a session that I attended that didn’t have someone who was there primarily as a customer of healthcare (commonly called “a patient”) on the platform, presenting or participating in a panel discussion.
My ePatient socks were knocked off from jump thanks to the opening keynote by Michael Seres and Marion O’Connor on “The New Engaged Patient,” which was the morning keynote on Friday. Michael uses his blog as his personal health record, up to and through a lifetime battle with Crohn’s disease that led to his becoming the 11th patient to ever receive a bowel transplant, and only the 6th to survive that transplant experience. Michael is hilarious, and Marion is exactly the sort of caring brainiac any patient would like bedside as s/he battled a life-threatening illness. Here’s the video of their session:
The rest of the day played out as a firehose of ePatient awesome, including the first presenter to bring me to tears: Sara Riggare, a brilliant woman who is, among many other things, an engineer and a Parkinson’s patient. During the panel discussion on “The Self-Tracking Patient,” and my (somewhat sobby) conversation with Sara afterward, was when I fully realized, even though I’d talked about it last year on one of my blogs, that I had been born an ePatient. Well, maybe not born, but them that brung me into the world also brought me to ePatient-cy. I felt my late father, whose Parkinson’s laid him low, and then to rest, over 10 years ago, standing by me as I listened to Sara talk about her own self-tracking and self-advocacy. My dad was a warrior – literally, a US Navy fighter pilot – and brought that warrior spirit to his battle with Parkinson’s. I’d like to think that Big Mike would be proud of the work I do today to bring sense, and sensibility, to the most human of all sciences: medicine.
The Friday sessions ended with a “What If Healthcare …” panel discussion, conveniently tagged for the Twitter-verse as #whatifhc(click that link for a Symplur transcript of the conversation as it unfolded live). This session is the only one that pressed my buttons in a not-good way, and here’s why: there were a group of white-dude brainiacs, and one not-a-white-dude, on that panel. Don’t get me wrong, I like white dudes. Hell, I’ve married two of ’em (NOT at the same time!). But I found it sort of anachronistic that, as the “dream big” panel on the first day of a Patients Included medical conference on the campus of a major medical school (Stanford Med), the participants on that panel were so very white-dude, with the notable exception of healthcare artist/activist Regina Holliday. Regina herself mentioned the very-not-diverse makeup of the panel during the session. I made the observation on Twitter, as I listened to the panel’s conversation, that healthcare in the US is a great wealth-transfer system … but as a health-transfer system?
Saturday opened with something for which I was utterly unprepared: hearing first-hand about the project that won the 2012 Intel ISEF Prize. Jack Andraka is the 16 year old kid from Baltimore who, at 13, decided that not having a reliable early-detection test for pancreatic cancer was a terrible thing. He resolved to create that test … and he did. It’s been patented in the US, and is in the process of being patented globally. Here’s the first-look video of his hilarious and inspiring call to action for open science:
Frankly, I count hearing that talk, and meeting Jack later that day at the MedX reception on the Dean’s Lawn, as the highest high point of my MedX experience. I told Jack that I couldn’t wait to see what he did next, but that even if he decided to rest on his uber-science-geek laurels with his mesothelin discovery, he’d given a gift to humanity unlike any other since Jonas Salk. Visit his website to keep track of this approachable, funny, huge-hearted young man who has the mind of a god.
The other big high of my MedX time was finally – FINALLY – being in the room with all three of the women who birthed #BCSM, one of the most powerful healthcare communities on Twitter. My ePatient journey may have been started by the voyage with my parents through their health issues, but it was forged into hardened steel by my own breast cancer experience. Connecting with Alicia Staley was one of the things that helped turn my book, Cancer for Christmas, into an Amazon bestseller in ’09. I spent much of the conference touching base with the #BCSM crew, who were in attendance in force at MedX. It was #BCSM Summer Camp!
The conference closed on Sunday with a keynote by Vinod Khosla, “2025: 20% Doctor Included?” Khosla’s viewpoint – which I share – is that technology will provide more reliable and efficient diagnostic tools, removing the mis-diagnosis risk that leads to most medical errors. He also stated that transformation of the healthcare system will not happen from within. Khosla backed up his positions with evidence, and I was nodding so hard in agreement I risked whiplash. It was the perfect close for the epic firehose of forward-thinking that was MedX 2013. Here’s the first-look video of Khosla’s talk:
What will I remember most about my MedX experience? I’ve listed some of it above, but even as I write this post I realize how much more mental food was served up during those three days. There were the conversations that happened over coffee, during lunch, with a frosty beverage in the Sheraton bar. I met people I’d known online for years, but had not had the opportunity to hug and thank for the impact they’d had on my life until MedX put us in the same room.
Amir Dan Rubin – the CEO of Stanford Hospital & Clinics, his master class on quality improvement will inform my hospital-med journo work for years to come
Dr. Marc Katz(I hadda go to Silicon Valley to meet a terrific doc who practices down the street from me – go figure)
What did I learn at MedX? I learned that there’s hope. Hope for healthcare, hope for humanity, and hope for every single person who winds up a patient (and hey, we’re all patients, right?). The key is that medicine is a team sport. It requires the full participation of everyone in every health-related transaction.
So pick up your ball, and let’s play together, shall we?
Last Friday, I put out a call for posts about healthcare costs and/or health insurance innovation for the HCSM community. Here’s the brain candy that flew over the MightyCaseyMedia transom:
First up: an examination of STD occurrence alongside STD testing costs in the New York metro area from ClearHealthCosts.com(@chcosts), written by Sherry Mazzocchi. This is a deep dive into the incidence of STDs across New York City, with snapshots of what consumers actually pay for STD testing at a number of facilities across the region. Runs from $0 (for members of a subscription medical practice) to $600 for women who visit a Westchester County practice. Like Uwe Reinhardt has said for years, healthcare pricing is chaos behind a veil of secrecy.
For patients looking to pierce that veil and direct-pay for their care, ClearHealthCosts’ founder Jeanne Pinder offers up this post – New ways of paying: Cutting out the middleman. Seems like everybody’s looking for a better way to hold down health costs. In a number of cases, that means patient and provider are getting together directly, without the middleman (the insurance company). You could start asking, “How much is that?” and acting on the answer.
With Oct. 1 and the dawn of the ACA’s new health insurance marketplaces, Jeanne Pinder shares What it means to you: Oct. 1 and buying health insurance. Maybe you avoid the topic of health insurance, but you can’t any longer. If you’re not covered by employer insurance, Medicare or Medicaid, you will need to know things about buying insurance (or choosing not to buy it). Her post offers some actionable advice on how to figure out what the marketplace means to you.
From one of my favorite places, Costs of Care (@CostsofCare), comes a post by David Marcovitz titled “A Routine Denial,” about how it feels to have an expensive test declined by your insurer after it’s been done. If you’ve ever been on the receiving end of one of these notices, you know that it feels anything but routine. After the appeals process. David discovered just how chaotic healthcare pricing is. A great read.
Like David, Brave Bosom founder Andrea Downing (@BraveBosom) discovered that she had a genetic predisposition to a disease. In her case, it was BRCA, the genetic mutation that increases risk for breast cancer. Andrea is a leader in the young “previvor” community, and offers up this post on what healthcare reform means for her, for her community, and for other people who have potential destructive dynamite in their DNA. Genetic testing and counseling is a terrific resource; worrying how it might impact your insurance coverage shouldn’t have to be a consideration when you’re making a decision about your health.
ePatient Dave deBronkart (@ePatientDave) is a world-famous (really) patient activist. He’s written two books, and spoken at conferences across the globe. His post “Ratty boxers: what it means to really, truly have no money” resonated powerfully for me, since all e-patient experts face the same challenge: patients aren’t yet seen as experts worthy of remuneration by the healthcare industry. Dave has helped move the needle on that – here’s hoping that his message spreads into the hearts and minds of organizations who are still expecting patients to pay for the privilege of speaking to audiences who need to know what we know: how to make healthcare more human-friendly.
Alan Brewington (@abrewi3010) blogs at PainTalks.com– he’s a guy with chronic arthritis from some rather epic sports injuries. He sent along a post on the pending health insurance exchanges from the front lines in a Red State: Idaho. Titled “Health Insurance Exchange, Idaho, Arthritis, and Me,” Alan’s post walks the reader through an exploration of the new health insurance exchange marketplace, figuring out what kind of coverage is available at what premium cost. As a chronic pain patient, Alan knows more about the ins and outs of health insurance than the average guy his age, and makes some good observations about what it will take for healthcare reform to work.
Closing our cavalcade of #HCSM awesome, here’s a post from Carolyn Thomas at MyHeartSisters.com(@HeartSisters) on how online communities help patients cope, and give them the power to move on. “Discover. Join. Leave.” is a great journey through the life cycle of online patient groups. Some come and stay, others arrive looking for specific help, all make a contribution when they can. Peer-to-peer healthcare is a web, just like … the web. Carolyn tells a great troll-taming story, too – another terrific read.
If you’d like to participate in the HealthWorksCollective #HCSM Review – click this link to look at the schedule, and find out how to get on the list. Thanks for reading, and I’d love to hear your thoughts in the comments!
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.
