Living with MCL

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.

At least some of you know I’m not a fan of alternative treatments, or supplements of any kind. Few if any None have shown to be effective by any legitimate clinical research. In my opinion they are just scams designed to separate gullible and desperate individuals from their hard earned money. But I’ve also never criticized anyone for trying them.

Ok, so maybe I have criticized the lengths some people will go in their use of alternatives treatments. I can certainly understand the desperation of some people, but when I read a post such as the one below, from one of the many lymphoma/leukemia message boards I subscribed to, I can’t help but be reinforced in my belief of the lunacy and the futility of it all, as well as the potential danger.

Dear List Members,

I receive[d] my shipment of Essiac tea and made my first batch.

The taste is like bad coffee–not too bad. With this particular formula, you consume the grounds along with the tea. Since the teas is pulverized into fine powder, this is not a problem at all.

I started with the recommended dose of 3 oz 3 times a day.

That’s comes to about $128/month. By comparison, I spend about $25 per month on green tea, but at least it doesn’t taste like bad coffee. Plus I wouldn’t put it in the same category as this garbage.

Anyways, he goes on.

After two days, the lymph nodes in my neck increased in size very dramatiically and painfully. Plus new lymph nodes were popping up under my arms. I found the lymph node enlargement alarming since they rarely ever change size and when they do, not by much.

Lymph node involvement has been present since the beginning albeit at a low level of enlargement. Then I found myself waking up in the middle of the night with the lymph nodes in my neck hurting like hell. I should point out that the nodes on the left side were much more pro- nounced than on the right. The pain would only subside once I got up, and moved around. I’m not much into prescription pain killers and really had nothing on hand to dull or extinguish the pain which was quite severe.

This has continued every night since. About the only thing that quiets the pain is to put a north facing magnet over the area and wait. Eventually, if I’m lucky, the pain subsides enough for me to go back to bed.

A north facing magnet! Unreal! I wonder if he has to sleep facing north as well? Well, if you think that really works, I’ve got some swamp land to sell you in Arizona.

My hematologist/oncologist has not seen me since this happened though I did have a blood test on Friday. Don’t know the results yet.

In trying to figure out what happened, I came to a few tentative conclusions. Essiac is a powerful detoxifier and immune stimulant, particularly, stimulating b and t cells. I believe that the detoxifying effect temporarily overloaded an already clogged up lymphatic system and whatever garbage was collected had no place to go, and not enough fully functioning immune cells to clear away the debris, in addition to adding more lymphocytes to the overall load.

Oh yeah, I’m sure that’s the reason. NOT!

The lesson here I believe is to go slow with the Essiac at first, depending on how advanced your leukemia is and how enlarged your lymph nodes are.

CAN YOU BELIEVE THIS? HE’S STILL CONTINUING TO USE THIS STUFF.

Is there a remedy, once the lymph nodes have reacted and are now painfully enlarged? I believe there is. It is a very simple, even elegant solution: rebounding.

I have started health bounces on my well-constructed mini-trampoline for 10 minutes at a time, 3 times a day and am already seeing improvement in shrinking the lymph nodes in my neck that are causing me so much pain. I don’t have the expertise or the time to explain how and why this works. For the insatiably curious, I recommend you Google Albert E. Carter and go from there.

Bouncing on a trampoline is going to reduce the size of lymphnodes. He’s got to be kidding.

Will post again when there is any new to report.

I can hardly wait, so I will have something else to write about.

And now that I think about it [and just so I get my US health care rant in for the day], could the reason people go to such extremes, be the result of our dysfunctional health care system, or is it just there are way too many stupid and gullible people in this country.

It’s raining outside, and as you might expect, I am bored [big time].

So I thought I would give you a little taste of some of the discussions I’ve come across on the various list serves I belong to in relation to my MCL, which I made particular note of, concerning medical care and what ever.

In this first post, a woman is complaining about the poor care she is receiving from her primary care physician (PCP).

I left my PCP’s office in tears today. I’ll give you a little background, when I do go I usually have to wait 1 to 1/2 hr to even see him, then, he’s with me for about 2 minutes. <snip>

Anyway, I’m in constant pain, I mean constant, with the RA, the joint pain from the chemo, the bursitis and degeneration in my hip, the carpal tunnel in both hands, all of which happened after chemo. The Doctor came in and said “what’s going on today” I said “I’m in pain” his reply “again?”. He says “I’ll send someone in with your prescriptions” and started leaving the room, I said “wait” and he replied with “I’ll be right back”. When he came back I asked if he has even read my chart concerning all the pain I’m in, he said yeah but he was more concerned with the “cancer”. He proceeded to leave the room again and I said I wanted to talk to him about some things, again, he said he’d be back. When he finally came back I asked him about a pain management program because I want to work, which is getting harder every day. He said “let’s wait until after your pet scan and we’ll worry about it then” I just felt like he was saying let’s wait to see if worth the trouble or not or let’s see if you’re going to live first, then he left the room, all this happened in about a 2-3 minute span.

<snip>

I have to go to Doctor’s “in network” so my options are kind of limited, but I don’t think I can ever see that Doctor again after today!!!

That’s unfortunate, but doesn’t she understand that as reimbursements continually get cut to health care providers by the government (Medicare/Medicaid), and by health insurance companies [to increase profits], some doctors don’t always have the time to be as concerned, and they just aren’t going to perform to the best of their abilities.

Just think about that for a minute. How would you feel if you were asked to work for less money each year?

And here’s another email from some one who wants his insurance company to pay for a visit to an out of network doctor, when his plan doesn’t give him that option.

I was wondering if anyone has advice for an appeal letter to send to our insurance company to appeal our denied request to go see an out of network physician for a second opinion. If possible please also forward my wife on any suggestions or advice as we will be working together to come up with a letter.

I guess he must think he’s in a country like France or the UK where you can see any doctor you choose. But he’s not. He’s in the good old US of A, where we have enough trouble just getting the benefits we’re entitled to, let alone trying to squeeze the for-profit health insurance industry for benefits we’re not entitled to.  GOOD LUCK! (I might also had some of my comments back to him weren’t well received by a few members of the message board.)

And finally, there’s even some religious undertones which go on here. One lady was upset because her cousin, diagnosed with non hodgkins lymphoma refused treatment, and just wanted to die. A lot of the posts were supportive, but this one post got my ire.

The neighbor down the street, at eighty-something had had successful heart surgery and seemed to be on the mend after months of suffering and several hospitalizations. She was diabetic but then suddenly developed kidney failure. She out and out refused dialysis. Wouldn’t discuss it and her conversation amounted to, I’m ready to die. Period. End of story. Her husband and friends’ pleas were ignored. Then in her final two days’ dying in an extended care facility she regretted her choice (told my wife who works there). Rational decisions aren’t everyone’s choices. Sad to say.

Anyone else think this post is contrived, and designed to advance an agenda?

Oh well, like I said, I was bored.