Living with MCL

As Roseanne Roseannadanna would always say “It just goes to show ya…it’s always something! If it’s not one thing, it’s another!”

Well now that I’m feeling much better, I can get back to my normal routine of whining and complaining. After all that is what I do best. Plus it’s windy and cold outside, and not conducive for a bike ride, so I’ve got plenty of time on my hands.

Yesterday at work we had Sarbannes Oxley (SOX) training, for which I had to attend. I thought SOX was about financial accountability, so why in the world would manufacturing, quality and metallurgy need to be in attendance?

Well as it turns out [at least how I interpret it], SOX is nothing more than AS9100, but with accounting factored in, and we have to write a[nother] manual documenting everything we do from order taking, to production, to shipping, to invoicing etc.

So I’m sitting there bored to death, thinking why in the world are we going through this, when it’s basically already done. The only people who needed to be there are the accounting department, and the only procedures that need to be written relate to accounting.

And on top of all this, we have to be audited quarterly to SOX. Isn’t it enough we do internal audits twice a year for AS9100, and an annual surveillance audit? Now we have more audits to contend with. At least we’re being spared the big SOX surveillance audit by an independent outside auditor, since we are pretty small (42 employees), and are technically now under the control of another division within the company.

Oh well, I guess I’d better start getting use to this, now that I’m working for a BIG company. Useless time spent in meetings, and doing other things hampering me from completing the work that needs to be completed to produce the products our customers want.

And then last night, I come across this post on the NHL (non-hodgkins lymphoma) message board

My out of pocket max for insurance, calendar year 7/1-6/30, is $1,000.00 As of 9/2/2009, after 4 weeks of rituxan at over $250 a pop, my OOP was met, yet, I kept getting bills for 5% owed on CT Scans and PET Scans. I overpaid $192.24 and have it all in black and white. 6 times I called my insurance company, 6 times was connected to a “Resolution Specialist” and 6 times was told, we’re right and you’re wrong. So April 14th, they finally admitted I was right and ya know what they did? They sent the checks to the Doctors!!!! Now begins my fight with the Doctors to collect MY money!

So anyway, I had an appt with my oncologist today, keep in mind I’ve been told all along that I have to have scans every 3 months until 2 years has passed. My first R-CHOP session was 4/14/08. Now I don’t know about you but by my calculations, this month is 2 years!!?? So my last scan was 1/18/2010 (NED) which would put my next scan this month, or so you’d think, right? So she sits there and schedules my next scan in July (beginning of next insurance calendar year) I just lost it, I said “wait a **** minute, that’s 6 months and you told me every 3 months for two years, why the sudden change?” She looked at me like I was insane!! How very convenient that it would have put me in a new calendar year and I’d have had to pay another 5% or the CT scan.

And this is the system so many people are fighting tooth and nail to protect. This would not be a problem in any other country in the world. Only in the US is it a problem.

First off, despite having NHL, CT scans every three months is way too often. I haven’t had one in over 5 years, and why would I? No matter what results it produced I still wouldn’t start treatment, so why risk the radiation exposure.

And secondly doesn’t she see this is one of the reasons health care is so expensive in this country. When health care is put in the same category as any other commodity, health care providers are driven by the profit motive to order tests and procedures, whether needed or not. Remember health care providers don’t get paid for doing nothing.

And this problem is further exacerbated by the constant squeezing of health care providers by health insurers [also a profit driven industry] to work for less and less compensation, which then leads to more unnecessary tests and procedures, forcing even the most ethical doctors and health care providers to reconsider what is in their own interest in order just to survive.

It’s a never ending cycle, constantly feeding on itself, and at the same time increasing costs and reducing the quality of the care everyone receives.

I know I’ve said it before, but eventually the entire system will implode, until at some point the only people who will be able to afford health care, will be the very rich, and those that have perpetuated this abomination of a health care system, and even they will likely end up having to go overseas if they want to receive anything close to quality health care.

Oh well, such is life. At least I am feeling better now that I’ve got that off my chest.

Yes, it’s been 8 years [a year and 8 days to be exact] since my diagnosis with Mantle Cell Lymphoma (MCL), and I barely even realized it.

Even to this day, it’s hard for me to comprehend the fact I was diagnosed with a very aggressive lymphoma, with an average life expectancy of only 5 years.

Of course one of the drawbacks with life expectancy predictions for a terminal illness, is there is almost no way of knowing how long the person had the disease before diagnosis. Was it one year, two years etc? It’s difficult to know, especially with the health care system that exists in the US, where a large portion of the population is excluded from the health care system, and others can’t or won’t go to see a doctor, because of the cost, until it’s too late. [OK, that was my political rant for the day.]

Just how many other cases are there like mine? How many others are walking around with cancer, and don’t know it?  If I hadn’t gone for a physical exam that fateful March day in 2002, I likely wouldn’t know I was sick. Heck, I still find it hard to believe I am sick, and I have all the documentation to prove it.

And how many people are diagnosed early on with a terminal illness, and get treatment prematurely, because of a fee for service health care system which encourages unnecessary treatments, when waiting and watching would have been a better approach (such as in my case), and then die prematurely due to complications of the treatment. [OK, so that's two political rants. I couldn't help myself.]

Who knows? I sure as hell don’t, but I still bless my lucky stars I did learn early on. Otherwise I likely wouldn’t have done many of things I have done since my diagnosis.

The only problem now is, the longer I go without feeling sick or needing treatment, the more complacent I’ve become, sometimes thinking I’m not really sick, while at the same time becoming more depressed with every blood test, thinking treatment is just around the corner, and the less likely I am to live life to the fullest. Some how I have to put a stop to that.

OK, enough feeling sorry for myself. Time for a bike ride.

Here’s one that will go down in the annals of US health care history, and is one, if you know how much contempt I have for our current system, and despite my [unsuccessful] attempt to refrain from such posts, boggles even my mind.

Edie [my wife] becoming eligible for Medicare (due to her disability) signed up for Kaiser Permanente’s Senior Advantage Plan. It’s a Medicare Advantage plan combining Medicare parts A, B and D, and usually referred to as Part C.

She filled out the application at the end of February, and very recently received a letter in the mail indicating her enrollment in the Senior Advantage plan, along with a new card also showing she was enrolled.

Great! Everything’s fine, or so I thought.

It’s now time for her to reorder her Lyrica, so the pharmacy calls to let her know there will be an $835 charge [it's a very expensive drug], since she hasn’t fulfilled the deductible part of her current plan, which is the plan she was on before she was enrolled in the Senior Advantage plan.

Thinking there is some sort of disconnect, since enrollment was very recent, she calls member services to find out what is wrong.

Now here’s where it gets really confusing stupid.

She [actually I did most of the talking] was told by several different people (I spent a good hour on the phone), that since my company didn’t remove her from their current plan, which doesn’t have a Part D benefit, she’s not entitled to the Part D benefit on the Kaiser Permanente Senior Advantage plan, despite still being enrolled in the Senior Advantage plan.

Now keep in mind the plan she was [is] on through the company I work for, is a plan for people not on Medicare, so it can’t have Part D, as that is only for Medicare recipients.

I was even told by one Kaiser customer service person, some people want it that way. They want two plans without a prescription drug benefit. In other words they want to pay for a prescription drug plan (Part D is included in the Senior Advantage plan), but not receive the benefit.

I could understand, if my company plan included a drug benefit, Kaiser not providing a duplicate benefit, but not when that plan doesn’t include a drug benefit.

It’s like we’re paying more, my company is paying, and Edie is paying Medicare ($110.50/month), and receiving less.

Now, is my reasoning flawed? Does that make any sense to anyone?

Or is that just the American way? Screw the customer, take their money, and don’t give them anything in return.

Well at least how we pay for it is certainly in question.

Here’s another in the continuing saga of health care woes another person (from one of the many health related message boards I belong to) just encountered in dealing with his health insurance company.

After receiving IVIG monthly for 1 1/2 years and no problems with insurance paying, had 1st treatment this month and denied. No change with insurance company or employer. Called insurance and they stated the drug is one of 6 that my company has chosen to bill under seperate drug benefit and not medical.  Called pharmacy plan and their notes on the drug state to call my company HR department as the drug is not covered.

Great news to find out friday after everyone is gone for the weekend…  This is the first battle that I have come upon since diagnosis and preparing myself to justify this treatment after I speak with the HR department and then whomever heads the committee that might have decided to not cover the drug. Any advise from others who might have run across similar denials.  Any organizations that people have found helpful to help fight such a thing?  Trying to stay optimistic that this will be resolved as I can’t find $6000.00 per month to pay for this as most will understand.

That certainly isn’t great news, and I sure hope he gets it resolved, but as health care costs and insurance premiums continue to rise, expect this to become common place as patients are expected to bare more of the burden of paying for their own health care.

This is just a perfect example of how little people understand their insurance policies. Most people don’t know how under insured they are until they get sick, and need to use it. Then it’s too late.

If we don’t change the way we pay for and deliver health care in this country soon, only the richest among us will be able to afford health care.