Living with MCL

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.

Why does obtaining health care, and buying health insurance [even Medicare] have to be such a daunting task in this country? Why are there so many different choices of health insurance?

Why can’t we just go to a doctor or hospital, and get the care we need without worrying about whether insurance will pay for it, or if not, how we’re going to pay for it, and then having to worry about going bankrupt because we can’t afford to pay for it ourselves?

My wife is eligible for Medicare Parts A and B in February 2010. I thought that would make life a lot simpler for us, but after reading a great deal of literature, and scouring the internet for information concerning enrollment in Medicare, and purchasing a Medigap policy, to fill in the gaps for what Medicare doesn’t cover, I discovered quite the contrary.

First off as a little background, for those unaware, Medicare enrollment is open to everyone regardless of pre-existing conditions, on your 65th birthday, or after 29 months of being deemed disabled. Purchasing a Medigap policy is also available to everyone regardless of pre-existing condition provided you enroll within the first 6 months of being eligible for enrollment in Medicare.

Medicare is pretty simple, there is only one choice, and the price is set by the government. Unfortunately that isn’t the case for a Medigap policy. There are 12 different Medigap policies to choose from, A thru L (not all of them are available in every state), each offering slightly different coverages, and at widely differing prices, even differing greatly for the save coverage plan.

So the first question that comes to mind is if each separate Medigap policies offers identical coverage, then why do the prices vary so much? Well, one reason is there are 3 different methodologies for pricing policies, community rated, initial age and attained age.

Initial age policies are priced based on your current age, and only increase due to inflation. These policies usually range in price from $5,000 to $6,000 per year. Attained age policies start out cheaper, ranging in price from $2,000 to $3,000 per year, but increase with inflation, along with an age factor. Community rated policies are simply rated by the community, and increase based on community factors. [Note: I couldn't find any community rated policies to compare pricing.]

But even that doesn’t explain all the differences, as policy pricing can vary widely even under the same plan and pricing methodology.  Doesn’t make sense to me. Why can’t there just be one policy that covers everything Medicare doesn’t? That would seem to be the logical approach.

Then to make things even more complicated, there are Medicare Advantage plans (Part C) which are a combination of Parts A and B, and sometimes Part D. This does appear to be the best deal, as there are typically no premiums, beyond the Medicare premium, but it is an HMO policy, so you don’t have the flexibility of original Medicare, and there are usually co-pays when you need any type of care.

But that raises a few other question. What happens if you enroll in a Medicare advantage plan, and then change your mind after a year? Can you go back to original Medicare, and then purchase a Medigap policy without restrictions? I’m not 100% sure, but from what I have managed to glean from all the information available, I don’t think you can. So you really need to be sure you’ll be happy with that type of plan. Of course you could always move out of your coverage area, and then be able to go back to original Medicare, and purchase a Medigap policy without restriction. [I think]

And what if you’re in original Medicare, and want to switch Medigap coverage, can you purchase a different policy during the open enrollment period without restriction? Again I don’t think so, but again you could move out of you coverage area, and then be eligible [I think].

So basically, unless you feel like moving all the time, once you make a decision on coverage, you’re stuck with it, like it or not.

Another separate issue is, I’m still working, and my employer provides health insurance for my wife and me. It is a high deductible policy, but they do give me the deductible, which is very nice of them.  So it seems I could really make out if I enroll her in a Medicare Advantage plan with the provider who currently provides our health care.

But can I just keep the employer policy, and use Medicare as the secondary? Or do I have to drop one or the other? Again I don’t know, but we plan on going there today to find out. And how will that effect future health insurance options when/if I retire [or get layed off]? And when I stop and think about it, I wonder what the chances are they’ll be able to address my questions, and concerns?

And that’s only just some of the questions. There are a lot more, but I would need a lot more time to list them all, and I’m not going bore everyone with that.

I just wish this was a lot simpler. It just boggles my mind, why the system is like this, and I always considered myself a pretty smart guy. It’s no wonder most people are confused.

Why do we really feel the need to make obtaining health care so difficult in this country? Is it a vast conspiracy by health insurers and the US government to prematurely cause the deaths of the elderly and so many others, by denying them easy access to health care, thereby increasing profits?

To me, it appears it is, otherwise it would be simple, just like it is in virtually every other country in the world.