Getting proper healthcare is utterly baffling. It really is.
November 9, 2009 in Health, Personal, The "High-Strung" Chronicles In my already exhaustively exhaustive (I’m exhausted) play-by-play of my brain activity within the past four weeks, there is one part of the story I’ve neglected to mention. I know this doesn’t seem possible, because I have mentioned every detail that could ever be applied to any story, anywhere, and I also added links. But this particular detail might apply to you more than the rest, or just interest you, because by golly it involves HEALTHCARE and INSURANCE, two of our favorite things!
When I had an allergic reaction to Dilantin, the anti-seizure med from hell, and was switched by my neurologist to the infinity more pleasant Keppra XR, I still needed my insurance company’s approval to cover the cost as part of my insurance plan (a good one through Current TV, btw). It would have probably taken a day or two to push through, but because of what the neuro considered a very timely situation, she started me on Keppra XR right away. How? The office had a drawerful of samples that some rep from the manufacturer had left for people like me to try out. I took a week’s worth.
But then my insurance company denied me coverage for Keppra XR, apparently because they didn’t feel there was enough research to prove that the XR (“extended release”) version was that much more beneficial.
Here’s the thing about extended release medicine if you’re not familiar… having a drug release the good stuff more slowly and over a longer period of time can really help overall stability and “coverage”… especially when I have barely enough short-term memory to remember to take multiple doses of anything. Or drink water. Or blink.
So the doctor’s office appealed my insurance company’s rejection with what I imagine was a stern doctor’s note about how my condition is unstable complete with medical records and just put the damn thing through we’re already started here kind of stuff. By this time, I had run out of Keppra XR samples, but my doctor’s office had more in the drawer! Another week’s worth! Crisis averted.
And then my neurologist’s appeal got denied. I was basically freeloading off the drug manufacturer because my doctor gave me free samples of a drug that worked well for me and my insurance company basically told us all to eff off. Now, mind you- this does not mean I wouldn’t have been able to BUY Keppra XR myself, I mean, I have a prescription, but it’s hundreds of dollars per month.
The doctor’s office announced the tragic news to me but nobody over there seemed all that upset or worried (there were still more samples in the drawer, and my doctor was going to call someone over at the ins. company directly). But, you know, these processes always take forever. There are archaic practices still in use, like FAXING and HAND-WRITTEN PRESCRIPTION NOTES THAT USE ROMAN NUMERALS, NOT EVEN KIDDING. I just felt very bounced around in a loophole. And Keppra XR is not like some fun, “woohoo I scored” kind of drug that people really want, by the way. Its highlights include confusion and walking into walls, and not having seizures in the street.
Then I got a call from some very nice gal at my insurance company (is it weird not to say the name of the company, btw? This is post is not meant to drag anyone through the mud), who informed me that although my Keppra XR coverage had been denied, and then its appeal denied, that I still had the option to file MY VERY OWN PERSONAL APPEAL! Because I’d probably come up with a more harrowing jungle story about escaping a wild pack of porkworms than my neurologist did? Because I even know a single ingredient inside a Keppra XR? Not sure. But I filed an appeal anyway. This is roughly how it went: “I can do that? Even after …. ok, yes, yes I would. Consider me appealing. Do I need to tell you any… alright then you have a good day as well. Thank you?”
Four days later I got approved. I got approved for refills through 2099, to be exact. I’m not paying for Keppra XR for another 90 years, mothereffers! Can anyone even play that much mah jong? Both my doctor’s office and my insurance company called me to tell me the good news within the last hour. Virtual high fives!
Do you see how many insane ways this story is insane, though? I mean, WHAT. IS. GOING. ON. behind the scenes back there? Are these companies so large/mismanaged/confused that I, Sarah Lane, have 11th hour 2nd appeal powers above my own medical team? This whole dumb saga turned out well for me, but I don’t actually know how. I do know that many of you who’ve left me emails/comments/tweets/nice thoughts are no strangers to the this world of approvals and denials, but I certainly am, and am just baffled.
Also? I start tapering off my Prednisone tomorrow so let’s all hope Sarah the Hulk tapers off too. I tore up an entire mahogany dining set while writing this blog post.
Reader Comments (27)
You are small, but mighty. May your need for Keppra end long before your 90-year supply.
As strange as all this is at least it all worked out for the best. I truly understand how frustrating and confusing all of this is. With my dad was recently diagnosed with cancer and I know how frustrating the insurance companies can be. Thankfully he is a former veteran, but there are so many conflicts of interest and miss communication that YOU just want to just get it over with already. I wish you the best of luck.
I love you on TWiF. The amusing interaction you have with Marty makes me LOL every week. Stay strong and I hope the best for you and your family.
I think saying no to Sarah Lane is impossible. Something to do with physics. Good to see it worked out!And remember, pills are the solutions to all of your problems. ALL of them.
Sarah,
I'm going through a similar but different problem. I have a chronic disease, and my healthcare provider has sent me a letter saying they are dropping coverage in my zip code. Huh? All people with this current provider, and yes I will say it, United Healthcare, are dropping coverage to everyone in my zip code. Now, my corporate insurance policy has always been strong but they can't combat this since the healthcare provider is actually leaving their network coverage. I called my Dr. who said they are getting many call like this, of course, and they only accept one other provider which I have discovered will cost me $40 per visit more at the office, and will only cover 20% of my meds. Uggghhh! So there goes that little bit of extra money I had a month, to ummm, eat with. So I have to take these meds for the rest of my life I guess it's time for job two. Hopefully I'll get a raise soon to cover the extra. Oh and btw, we didn't get a raise this year because of the "economy" . The snowball effect is happening. I feel for you and I'm in the same boat with these damn companies. But at least you and your Dr. found a way out for you. Can you say "reform"? :) Glad I'm a glass is half full kind of person.
Have a good night,
TWiF fan
Sarah, don't try to make sense of it -- you'll disappear into some sort of bureaucratic worm hole. Don't think about insurance company actions as a cause and effect, rational type thing. It's more like arguing with a (petulant) 4 year old.
My radiation oncologist had gotten 6 weeks of treatments (30 "doses") approved. Everything went great, until week 4 when all of a sudden my insurance company -- United Healthcare (see that UHC? I said your name! Take that! Oh and that flaming bag of poo on your doorstep was from me! And it wasn't dog poo!) -- decided to deny payment for that week. Just for week 4. Weeks 5 and 6 were fine w/them...
(now that I think about it, they're kind of like a Monty Python skit....)
Thank you Chris Varner....reading your post made me feel like I'm not alone...UHC...sucks big moose .....well you know...but we all agree it seems on big corporate healthcare...when they are good, they are good..Until we cost them money...good on ya Chris...Sarah love ya...rock on!
I went through this about 8-9 years ago. Insurance sounds good until you really get sick, then you find out all the exclusions that aren't explained. Make sure to separate "health care" from "insurance" though. Finding good health care isn't hard in this country, but paying for it... now that's a whole messy scam ridden money juggernaut. Keep your eye on getting well, regardless of the costs. Get through it first. Good luck Sarah.
Much love and better health sent your way. You are a sweet tiny person, and I wish you the best; and hope for it myself, because you're damn smart and funny. I haven't said anything since your ordeal started but have checked in everyday. I'm a fan of humanity and you are a good example of the good humanity has to offer: You help me be less pessimistic and Mr. Sargent as well.
Much love and better health sent your way. You are a sweet tiny person, and I wish you the best; and hope for it myself, because you're damn smart and funny. I haven't said anything since your ordeal started but have checked in everyday. I'm a fan of humanity and you are a good example of the good humanity has to offer: You help me be less pessimistic and Mr. Sargent as well.
Wow, only 9 comments. Got to get a word in before the flood gates open. Hope you read this.
I love your stuff! Keep it coming. More pictures please.
Ricky G.
PS
I Can't spell
Much love Sarah. Hope everything works out well for you. Sounds like you've been through the wringer (ringer? Is somone calling?!) the past few weeks.
It seems the issue was Keppra XR? I wonder if it would have been approved if it the doctor changed ti to regular Keppra (if it exists, as I have no idea)? Total neophyte on drugs, but I bet the XR is a ton more expensive, and that regular Keppra would have been rubber stamped?
You have warnd you co-hosts about the sideefects of pred's
Maurice- pardon?
Having worked in the Medical Reimbursement field, lemme tell you your account is spot on. You would be surprised how fragmented and disorderly the process can be. Many times I used my own personal relationships with providers and medical professionals to help Kidney patients gain access to meds. On the one hand, it was certainly validating. But on the other, completely tragic.
I am interested to know if you are more of a believer in private insurance (Health Care system) now that you have received access to your meds(?)
Get well, Sarah!!
You really have a way with words. Maybe you should consider a career in journalism... oh yeah. Never mind
Hi Sarah, I'm an Australian who has worked in the private health insurance industry here and am following your country's health care debate with interest.
To give you an indication of the difference between the US and Australia, here is a quick summary:
The Australian government runs the Pharmaceutical Benefits Scheme (PBS) which basically has a clinical board who evaluate the effectiveness of drugs and if approved the government will negotiate a price with the Pharma company and bulk buy the drug. All Australians who are prescribed the drug by their doctor for the intended medical conditions then buy the drug at a maximum cost of about US$30. Those on government pensions and those on low incomes only pay about US$3 for each prescription.
You would have got your Keppra XR for a maximum of $30 here, no questions asked or need for appeals.
If the patient wants the drug for a non approved use eg. I used to take a drug called Proscar to prevent hair loss which also had the use for men with prostate problems. I had to pay the full cost for my cosmetic use but if prescribed for the prostate condition it would cost the maximum of US$30. As I had private health insurance, I was able to claim a portion of the full cost back from my private cover anyway.
Here in Australia we have a universal health insurance for medical but about half of Australians also buy private insurance for private hospital cover and cover for para-medical services eg. chiropractic, spectacles, dental. While our system isn't perfect, it seems to work quite well.
Most private health insurance companies here operate as not-for-profit mutuals operating for the benefit of their members, are government regulated (no pre-existing rejections allowed, insurance premiums are 'community rated' meaning higher prices can't be charged for those who are higher risk, and the government sets minimum standards of benefits all insurance policies must cover).
In your example, it demonstrates to me why health care costs are so high in the US...about 17% of GDP compared to Australia at about 10%.
So do you in the US have almost twice better health outcomes than us in Australia? No, I don't think so. To me the US system and your example shows how inefficient it is.
Anyway, enough of the lesson on Australia's health care system, hope the drug continues to work for you and all the best Sarah, enjoy your work.
As a person who works with people caught between poverty and medical costs every day, it seems like people have to be personally involved to see the need for affordable, universal health care in the United States. I think they gave you the drug because you have excellent taste in boots!
Your pal,
Chris
Sarah,
My 10 year old son and I listen to you all the time. We share the show together and laugh and joke together about it on our various skateboard trips. We are sending you good thoughts and know all will work out. The way you are attacking this - with humor and honesty is amazing and truly motivating.
Jim and Jack
Hi Sarah,
I am sending you a huge virtual hug, I know your pain, sense of frustration and disbelief.
Sadly its not any easier to get the care you need for a loved one in the UK, different groups of people - SAME BS and red tape.
I don't know if they can cure you but I hope at the very least they can get keep you stable and enable you to have a long and normal life that you can enjoy to the max.
Best wishes,
Najeeb Mirza
London, UK.
What a pain. Imagine how bad it will be if we get universal healthcare, every time the gov. takes over something does it get better or worse? think the DMV x 1000
Sarah
from memory the side efects of prednisalone (i was on 40mg/day for a while) are
the changes to your agression levels- ime normaly placid but i had to walk out of a pub after some one acidentaly bumped me before i hit them.
boosts your apitite - I had more than a few homer simpson moments
mood swings i went from stressed out to giggling (at that point i took the afternoon off)
there are more trippy effects which i havn't experianced myself
oh and you put on wieght.
My wife's doctor switched over to computerized records so they could comply with the new government health care rules that went in to place this year. The computer decided that it did not have sufficient data to allow the doctor to bill the visit the way he wanted. Long story short her pregnancy visit was denied by insurance because it was billed as code 2222 and not 2223.
You see they are both the same thing but my insurance does not cover the 2222 code, No that would be wrong.
My advice keep every paper you get from insurance and the doctor. Match them up and get ready to fight because one number can make the difference between $900 out of your pocket and $100.
Can you imagine how messed up it will be when the government runs it. Just think how messed up tax returns are now.
Sarah,
I gotcha in my prayers. Never underestimate the power of prayer. I don't know if you're a religious gal or not, but it's never too late to start. My family and I have experienced the worst of this economic downturn. We applied last week for food stamps and that was the hardest thing for me to do. My kids can't eat the pride that I had, so I swallowed it....and it was sour. We had great insurance as I was self-employed in the real estate business. I paid my dues ($700mntlhy) for years. It paid for our kids births but we never had to use it for anything else. Now, my kids are on Medicaid and my wife and I are left with no coverage at all. As a stuanch Republican, I believed it was wrong for a healthcare planfor everyone. Now, I'm on the other side. What is the answer? I don't know. I'm glad for you that you have a good health plan of some kind. Just think if you didn't. You've got a great smile and warm personality that's infectious and you know we care about you. I'll be looking foward to your future blogs on how you're doing. Take care and God Bless You.
First,I hope the treatment works, and this will all be an event that makes you stronger. I've read your postings admire how strong you are and want you to know a lots of people are pulling for you. You added something to our lives and we thank you for the joy you've give us.
As a Canadian, I read stuff like you're going through and watch them see the U.S. news about the health care "debate" and those on the right having a problem with Government Health Insurance and look on in disbelief. I have not idea what you're opinion and it's none of my business. Our (Canadian) system is not perfect but when you're sick and need help the last thing you need is corporate politics. I have a problem with someone working in a company, that needs to make a profit/quoto deciding if you're worthy of a drug or not. Sure, you could argue governments "waste taxpayers money." But I'd rather see someone get a drug that does not need it vs someone not get a drug who does need it.
I'm glad it has worked out for you.
I think I could read endless blog posts about your daily life / trials. I know it all must be so difficult to go through, but you sure make it wonderfully amusing to read about! Thanks so much for sharing!
There's a movement to radically change California government, by getting rid of career politicians and chopping their salaries in half. A group known as Citizens for California Reform wants to make the California legislature a part time time job, just like it was until 1966.
www.onlineuniversalwork.com