The article profiles several different patients and tells their stories about how they racked up huge medical bills, mostly from hospital expenses. Whether a cancer patient, an ER patient for heartburn thought to be a heart attack (and a $21,000 bill for that), the recipient of an overpriced implanted medical device, or a patient injured from a simple fall, one thing is constant in all of these stories – everyone was drowning in thousands, even hundreds of thousands of dollars of medical bills. And the majority of the medical costs of these bills were grossly inflated and overpriced. Luckily I have managed to stay out of the hospital so far this year, but since January 1 I have accumulated a lot of medical debt due to doctor office visits, MRI and X-ray scans, prescription drugs, and expensive I.V. treatments for my RA. Let’s also add the bills for my psychologist appointments that I find necessary to help me stay sane trying to navigate all of this health crap on a daily basis. I feel like I’m going to the doctor all the time, even when I sometimes do cancel appointments (especially the therapy appointments) just to save money. Or I try to hold off on making appointments until after I’ve met my deductible and out-of-pocket maximum for the year. I’ve heard stories from many other people who also go without their medications, treatments, or doctor visits because they can’t afford it. This, I feel, is simply wrong. Nobody should have to sacrifice his or her health because of financial reasons. But the way our healthcare system is set up, that is exactly what patients are pressured to do if they can’t afford their medical bills. Go into massive debt? Declare bankruptcy? Lose your house? Risk your life? It’s such a racket, with your dollars lining the pockets of the CEOs and administrators of  many health care and hospital systems – especially these so-called “nonprofit” hospitals that are actually making huge profits.

Me, Remicade I.V. treatment, Maple Grove, MN, 2013

In the article, Brill says, “When we debate health care policy, we seem to jump right to the issue of who should pay the bills, blowing past what should be the first question: Why exactly are the bills so high?” (Brill, Steven. “Bitter Pill: Why Medical Bills Are Killing Us.” Time. 4 March 2013: 18-55. Print.)

Yeah, good question. Why ARE they so high? Patients in other Western countries (France, Germany, England, etc.) pay only a fraction of what we do in the United States. Do we receive better care? No, on the contrary oftentimes. And why isn’t anybody raising a stink about this? About how Americans have been getting fleeced by the health care industry for decades? People’s lives have been ruined by it and it’s only getting worse. “Obamacare” (aka The Affordable Care Act) will help with some things but it can’t fix the entire system.

Brill states,

The result is a uniquely American gold rush for those who provide everything from wonder drugs to canes to high-tech implants to CT scans to hospital bill-coding and collection services. In hundreds of small and midsize cities across the country–from Stamford, Conn., to Marlton, N.J., to Oklahoma City –the American health care market has transformed tax-exempt “nonprofit” hospitals into the towns’ most profitable businesses and largest employers, often presided over by the regions’ most richly compensated executives. And in our largest cities, the system offers lavish paychecks even to midlevel hospital managers, like the 14 administrators at New York City’s Memorial Sloan-Kettering Cancer Center who are paid over $500,000 a year, including six who make over $1 million (p. 20).

Brill also gives some pretty staggering statistics regarding health care costs:

We’re likely to spend $2.8 trillion this year on health care. That $2.8 trillion is likely to be $750 billion, or 27%, more than we would spend if we spent the same per capita as other developed countries, even after adjusting for the relatively high per capital income in the U.S. vs. those other countries. Of the total $2.8 trillion spent on health care, about $800 billion will be paid by the federal government through the Medicare insurance program for the disabled and those 65 and older and the Medicaid program, which provides care for the poor. That $800 billion, which keeps rising far faster than inflation and the gross domestic product, is what’s driving the federal deficit The other $2 trillion will be paid mostly by private health-insurance companies and individuals who have no insurance or who will pay some portion of the bills covered by their insurance. This is what’s increasingly burdening businesses that pay for their employees’ health insurance and forcing individuals to pay so much in out-of-pocket expenses (p.21-22).

THE CHARGEMASTER:

What’s a chargemaster? I had never heard of it until reading this article. And, the chargemaster plays a big part in the article and in health care, yet most people have no idea it exists or what it even is. The chargemaster is every hospital’s internal price list. Brill says, “I quickly found that although every hospital has a chargemaster…Whenever I asked, they [hospital officials] deflected all conversation away from it. They even argued that it is irrelevant. I soon found that they have good reason to hope that outsiders pay no attention to the chargemaster or the process that produces it. For there seems to be no process, no rationale, behind the core document that is the basis for hundreds of billions of dollars in health care bills.“

The most inflated charges on the chargemaster are billed to those without insurance, while patients with most forms of insurance (although some discount insurance policies aren’t even accepted at various hospitals) get a discount on the chargemaster prices. Although – insurance discount or not, the prices are hugely inflated. Example? Brill writes about a $108 charge for common antibiotic ointment that appeared on a patient’s bill under the category “Pharmacy General Classification.” For $5.14 I can get a tube of over-the-counter Bacitracin ointment from Target. I just called the pharmacy there and that’s the price I was quoted. $108 is a big difference compared to $5.14. That’s just one small example of common hospital supplies whose prices are ridiculously inflated in clinic and hospital use. Another example Brill writes about  is patients getting charged for the surgeon’s hospital gown (the hospital charges X amount when you can get the same gown on Ebay for a fraction of the cost), a “warming blanket” that is probably going to be reused, the black Sharpie marker used to mark the incision spot on a patient’s body before surgery (this one blew my mind), diabetes test trips (hugely inflated price), basic little gauze pads (available online for a fraction of the hospital price), generic Tylenol for $1.50 a pill (how many pills in a bottle can you get at CVS or Target? Do the math), and so on. All of these extra charges add up quickly, never mind the big charges–such as hospitals making money on what they charge patients for routine lab work and tests, MRI scans, and the cost of medical devices (from such companies as Minnesota’s very own Medtronic).

To put things simply (hopefully I’m not simplifying too much) – one of the most immoral, unethical deceptions that I see is the use of this “chargemaster” by the hospitals–that they can basically charge and make patients pay whatever they want and there is no regulating this process. A lot of people whine and moan about Medicare sapping our federal resources and sucking the money out of taxpayers’ wallets, but Medicare costs are actually controlled and regulated by Congress. There are checks and balances going on with how health care prices are determined, and therefore they are kept at manageable, affordable rates. Yes, but that means hospitals are losing money to Medicare patients, right? No.

“When hospitals say they are losing money on Medicare, my reaction is that Central Florida is overflowing with Medicare patients and all those hospitals are expanding and advertising for Medicare patients,” says Jonathan Blum, deputy administrator of the Centers for Medicare and Medicaid Services. “Hospitals don’t lose money when they serve Medicare patients” (p.47).

To wrap up – this article is excellent and informative and gives a straightforward look at what’s going on in the health care industry today regarding patient costs and medical debt. It’s a really long article, but worth the read. Brill tells heartbreaking stories of people falling into financial ruin due to medical bills, and touches on topics such as Medicare, Medicaid, “Obamacare,” health insurance, cancer care, drug companies, collection practices, national and international health care cost statistics, and a lot more. Please read the article and tell me what you think. Living for the last 15 years with a chronic, expensive disease has not only sapped away some of my happiness and freedom but also a lot of my money–which has also taken away my freedom and happiness. I know I’m not alone in this sinking boat, either. This affects everyone, whether you’re sick or not. All it takes is one injury or accident or health problem to land you in thousands of dollars of debt.

We need to fight to change this.

Thank you for reading, as always -

Angela

Ft. Myers Beach, FL

Hello from Florida! I’m on a little family vacation now in Ft. Myers Beach with my parents, my sister, and her husband and their two year-old daughter. We just celebrated my mom’s birthday today; we had dinner in Naples and then watched the sunset from the Naples pier. It’s been wonderful to escape from cold (and SNOWY, still!) Minnesota. My family and I have been recently dealing with a very stressful and scary health situation – my dad was diagnosed with prostate cancer. We still don’t know the results from the last tests he had done to see if the cancer has spread. He wanted to wait to find out after this Florida trip, which is understandable I suppose. Although my mother, sister and I have been worrying like crazy. Relaxing on the beach and just getting away from “real life” for a little while has definitely helped to take our minds off things. So while the questions and fears and “what-ifs” are still nagging in the back of our minds, we are having fun being down here, enjoying the beautiful Gulf of Mexico and the sunny Florida weather. It’s been especially a joy to watch my little niece running around on the sand and getting so excited about being at the beach. She’s so adorable I almost can’t handle it – I just want to hug and kiss and squeeze her all the time. So cute.

In RA news, my arthritis is worse again, of course. Both ankles have been swelling up like balloons, especially my right foot and ankle. I’m not sure if it’s the humidity, the extra walking, or all of the Diet Coke I’ve been guzzling. It’s probably a mix of all three, I’m guessing. So I’ve started taking prednisone again, icing my ankle and I’ve cut way down on the Diet Coke consumption. Water just isn’t that satisfying when you’re lounging in the sun by the beach and you want something cold and zero calories to drink though. But Diet Coke is bad, I know that. Also pain-related, like the moron I am sometimes, I was careless and got terribly sunburnt our first full day here. I went and laid on the beach wearing a tank top and shorts for seemingly not that long – but apparently it was long enough to get fried. What was I thinking? Hello, pasty white Minnesota skin that hasn’t seen sunlight since last May/June! Stupid. My shoulders, upper arms, upper back and the backs of my legs are the worst. Trying to sleep Sunday night was torture. Luckily my sunburn is better today, but my shoulders and back are still pretty sore. You’d think by now that I would be used to being in pain constantly, right? No! I don’t think I’ll ever get used to it. Physical pain, mental pain, emotional pain – I need a vacation from all of it.

More posts soon, I promise. I have a lot of new arthritis stuff to write about!

Goodnight,

Angela

Juvenile Arthritis March, Bloomington, MN, 2013

Where has the time gone?! Seriously. I’m sorry it’s taken me so long to post these JAM photos, but here you go! The annual Juvenile Arthritis March was held March 2, at the Mall of America, and it was a great success. It was the busiest I’ve ever seen it in the four years I’ve been photographing the event. And a record amount of money was raised this year – over $153,000! Anyway, here’s the link to the photos I took. Enjoy!

JAM 2013 Photos

Two days after JAM, I went to Washington, D.C. for the Arthritis Foundation’s Advocacy Summit. Once again that was a fantastic, inspiring experience. I’ll write an update post about D.C. and the Summit soon!

Happy Spring!

(there’s still snow here, ugh)

Angela

JAM 2012, Mall of America, Bloomington, MN

Good morning! Why am I awake at 5:00 AM? The Juvenile Arthritis March (JAM) fundraising walk is this morning at the Mall of America! I’m taking photos again for the fourth year, I think? It’s always such a great, positive event – usually with a large turnout. I’ll post a link to the photos once I get them uploaded. Although I’m not sure if I’ll have time to do that before I leave for the Advocacy Summit in D.C. Monday morning. Yikes! I can’t believe I’m leaving so soon for that already.

More info about JAM can be found here, if you’re interested:

The Juvenile Arthritis March (JAM) 2013

This has been a difficult winter so far. I’ve been sick since Christmas, basically, with either bad RA flares or this upper respiratory thing that keeps coming back. I feel really whiny lately, which I hate, but I do hope some good things will start to happen here soon. I’m ready.

Minneapolis, MN

Hello!

So I stayed up all night working on this photo project, which is crazy, but I couldn’t sleep anyway. As you may (or may not) know, one of my passions in life is photography. The physical demands of it are often very difficult due to my RA (carrying heavy equipment, standing on my feet for hours), but I still have the drive and desire to keep doing it, for some reason. Anyway, there is a cool thing going on through the local public television station here, TPT (Twin Cities Public Television), called Capture Minnesota. And today is the deadline to enter photos of Minnesota for the Capture Minnesota II photo book. I’ve been digging around in my computer all night trying to find some of the best photos I’ve taken of Minnesota over the last couple years. I think I found some good ones, so if you feel moved to do so, please vote for them. I’d really appreciate it!

www.captureminnesota.com/users/aclundberg

THANKS!

The U.S. Capitol, Washington, D.C., April 2012

It’s official – I’m going to D.C. again for the Arthritis Foundation’s annual Advocacy Summit! The Summit this year is March 4-6th and I can’t wait. I registered for it yesterday – the last day to get the “early bird” discount. Hopefully I can get a travel stipend again like last year, because my financial situation is even more dire than a year ago (is that possible?). But being a part of the Summit is really important to me, especially since last year was such a positive, incredible experience. I’m going to contact some people at the Arthritis Foundation who are involved with the event to see if I could also photograph and write about the Summit in some sort of official volunteer way. I’d love to do something like that in addition to being one of the delegates.

Emily on Capitol Hill, 2012

Here’s a photo from last year’s Summit of Emily, part of our Minnesota group, reading a letter she wrote for Representative Keith Ellison (I think), sharing her story of living with arthritis.

Minnesota girls on Capitol Hill, 2012

And here’s a photo of Emily again, along with two other awesome kids (Sammi and Ali) who were part of our Minnesota group. I met and got to know so many nice people last year at the Summit – can’t wait to do it again!

Happy Inauguration Day (yesterday)!

“We hold these truths to be self-evident, that all men are created equal; that they are endowed by their Creator with certain unalienable rights; that among these are life, liberty, and the pursuit of happiness.” - The Declaration of Independence, 1776

So I am a day late posting this, but better late than never, right? I didn’t tune in to ALL of the inauguration coverage that was happening yesterday (and before yesterday), but I did catch some of it and listened to President Obama’s speech, which I liked. I’m glad that he mentioned health care reform in it, because of course that is something I am passionate about and support. Publicly debating politics or getting preachy about political issues isn’t really my thing, but I will stand up for what I believe in and I don’t expect others to agree with me. I voted for Obama again this election, as I did four years ago and I’m incredibly happy that he won. I suppose I would consider myself a Moderate Liberal – more fiscally conservative but socially liberal. I’m not for outrageous wasteful government spending (who is, really?), but I also believe in many of the social programs that exist to help people. And of course health care is a huge issue for me and one that has affected my own life, very personally, in so many ways. Speaking of that – I’ve been having some major health and arthritis-related things going on over the last month, which I will update about after this post. I promise!

Health care should not be a luxury or privilege for few, but it should be seen as a basic human right, and this I believe with my whole heart and mind. I don’t blindly think President Obama or the Democrats are perfect by any means, but I do sincerely hope that the President and people across all parties will realize the importance of improving our corrupt, archaic, and broken health care system and will do something about it. There are too many people suffering just in our own country because they can’t get decent, affordable medical care when or if they need it. This is wrong and must change.

Anyway, here are some quotes from President Obama’s speech yesterday that stuck with me:

“For we, the people, understand that our country cannot succeed when a shrinking few do very well and a growing many barely make it.

We, the people, still believe that every citizen deserves a basic measure of security and dignity. We must make the hard choices to reduce the cost of health care and the size of our deficit.

We do not believe that in this country freedom is reserved for the lucky or happiness for the few. We recognize that no matter how responsibly we live our lives, any one of us at any time may face a job loss or a sudden illness or a home swept away in a terrible storm. The commitments we make to each other through Medicare and Medicaid and Social Security, these things do not sap our initiative. They strengthen us.

It is now our generation’s task to carry on what those pioneers began, for our journey is not complete until our wives, our mothers and daughters can earn a living equal to their efforts.

That is our generation’s task, to make these works, these rights, these values of life and liberty and the pursuit of happiness real for every American.”

To read the entire transcript of President Obama’s speech, go here:

“The Washington Post – President Obama’s Second Inaugural Address“

The Mayo Clinic, Rochester, MN

I went down to Rochester very early Thursday morning for an appointment with an ankle surgeon at the Mayo Clinic. My ankle surgeon recommended I see this guy and I had been waiting many months just to get an appointment. Well, I have the sinking feeling that all of this is just going to be a huge waste. The doctor didn’t seem very positive that there’s anything he can do to help me. He (like so many other doctors I’ve seen) said that since my X-rays and MRI scans don’t show anything, he doesn’t think surgery would help. Or it could make my ankle worse. He does not want to fuse it (I don’t really want that either, but…). He doesn’t think scoping it again will help either. The only idea he had was to refer me back to my rheumatologist to manage my RA. Okay, great. But my rheumatologist doesn’t know what to do either. Since the rest of my joints have been pretty good and stable, my rheumatologist doesn’t really want to switch my medications. WHAT AM I SUPPOSED TO DO? My ankle is constantly noticeably swollen. It’s painful every day. I can’t walk or stand on it for very long before the pain becomes close to unbearable. I’ve been dealing with these stubborn ankles since 2005 when they both flared up out of the blue. The left one got a lot better (it’s still not normal) but the right one has remained in pretty bad shape. I’m at the end of my rope. Do I just have to live with this? I can’t believe that nobody can figure out exactly what’s going on or how to fix it. But anyway, I need to go back to the Mayo next Friday to have new MRI scans for each ankle. And then a follow-up appointment with the doctor after he reads the scans. The only appointment I could get for the MRIs is at 7 AM, which is really annoying. So either I’ll have to drive the almost two hours down to Rochester, leaving my house at 5 AM. Or I’ll have to go down there the night before and spend the night. None of this is very cost-effective, of course. But, I will go back and have the MRIs. I’m not feeling very optimistic right now, but I hope something good will come of this after I have the new MRI scans. If anybody has any advice or insights, please let me know.

First off, many apologies for my absence. I’m embarrassed at how long it’s been since I’ve posted on here. I’ll write a proper update post after this one, I promise!

Anyway, I have some exciting arthritis news! I’ve been given the opportunity to write two articles for Arthritis Self-Management magazine, which is based out of New York City. And, I’ll even be getting PAID to do it. Amazing! The first article will focus on young people who have RA and how they deal with challenges related to school and work. The second article will also be about young people with RA and how they deal with issues of relationships, dating, social interaction.

My question for YOU – are there any of you young adults with RA who would be interested in getting interviewed for either of these articles? I have a couple of people already, but I need some more help. Please let me know ASAP. I’d really appreciate it! The first article is due mid-January. Email me at lunda7@yahoo.com.