The Assertive Cancer Patient

Medicare, The Envelope, Please

As I mentioned on Sunday, an envelope arrived a day or two ago that looks like my Medicare paperwork.

This is what I wrote on Sunday:

I've been waiting for this, and meaning to call to find out where it was, because it should have arrived a month ago.

But now that it's here, I'm not in a hurry to open it because I know what it will mean: Paperwork to fill out (GOVERNMENT paperwork, the worse kind) and phone calls to make. (Ugh. Press 1 for English; press 2 for Espanol ...)

So tomorrow will be dedicated to Medicare paperwork and phone calls. Expect to see a rather heated post tomorrow.

Well, I didn't open it on Monday, because I was finishing a paid story assignment, and needed to get that done. I managed to delay until today, Thursday, and then until 2:30 p.m. ... You can tell how much I was looking forward to the job of getting myself signed up for Medicare.

Then, when I finally opened the envelope, there was my Medicare card, with an effective date of JULY 1, 2008.

So I guess Medicare eligibility is two years from the date you start collecting Social Security Disability, not from the date that you actually became disabled, which in my case was January 2006.

This means I can put this whole project aside until after my trip with Younger Son. That's good news, because my to-do list for the trip keeps getting longer, and I have just about 48 hours now till we need to be at the train station.

Whew. ... Double whew.

Of course, now that I have all this extra time, I should work on my tax paperwork for my accountant. But somehow I don't think that is going to happen today. I don't owe the government money, so I can just get The Tax Guy to file for an extension for me.

@ Jeanne Sather 2008.

Medicare: Ever Closer ...

During my meeting with Leah, Wonder Woman Social Worker, yesterday, she suggested that either WSHIP (my present health insurance) or Basic Health (a state program for low-income people) would have a supplemental policy that might work for me once I go on Medicare.

She also said that the private companies that sell supplemental policies to people aged 65 and older on Medicare would probably not sell me a policy--they refuse to insure disabled people who are on Medicare. (That's a loophole the federal government should close, but that's another post for another day.)

So I went to the WSHIP Web site, and sure enough, WSHIP has not one but TWO plans for people who are on Medicare.

Duh. I never even thought to check.

WSHIP has a Basic Plan

And a Basic Plus Plan

It looks like the Basic Plus Plan is the one I want. The monthly premium will be $312.60.

So do the math: $98/month for Medicare Part B, $312.60 for WSHIP Basic Plus, and an unknown amount for Medicare Part D, the prescription drug coverage. But say it's $50/month. That's about $460/month, which is less than the $777/month I'm paying now for my WSHIP coverage.

So I'll save about $300 a month, which is great.

Now I have to figure out which Part D plan is right for me. A search on the government Web site turned up 50 or so plans that I can choose from. I started checking formularies, to see which plans would cover the drugs that I take regularly, but gave up after about 15 minutes. It's too complicated.

I'll come back to it another day. Another option is to check with a pharmacy and see if they can tell me. A friend told me that Walgreen's pharmacy has a computer program that allows them to check for the best Part D coverage depending on the drugs you take regularly.

I don't usually go to Walgreen's, but maybe I'll stop by and see.

I also need to call WSHIP and see if I can change plans over the phone or if there is paperwork involved. I'm betting on a paper application. I also need to find out how long it takes them to switch me.

I haven't received my Medicare cards yet, but should within the next few weeks. And my WSHIP premium for January has already been taken out of my checking account. It'd be nice to start the new plan in February, but I'm (mentally) prepared for it to take longer.

This is the government I'm dealing with, after all.

Read more:

Medicare: Getting Closer to the Answers

Medicare Questions

Medicare Help

Tykerb and Medicare

Support this blog:

@ Jeanne Sather 2008.

Medicare: Getting Closer to the Answers

I went off this morning, in the pouring rain, to see Leah deRoulet, MSW, LCSW, at the Swedish Cancer Institute. Leah is the best social worker I know, bar none, and I'm not the only one who thinks so.

Leah just won an award that puts her among the top dozen social workers in the country: She recently won the prestigious Lane Adams Quality of Life Award from the American Cancer Society. (Applause, please.)

Anyway, back to the purpose of my visit to see Leah: Of all the people I had e-mailed about sorting out Medicare, Leah was the only one who said, "It's not as hard as it looks."

So I figured seeing her was my next step.

I had all my questions written out, and I took along a list of all my prescription drugs.

This is what I learned:

* Tykerb should indeed by covered under Medicare Part B, rather than under Part D, which is the very poor prescription drug coverage plan.

It's on Part D that you fall into the doughnut hole and have to pay more than $2,000 out of pocket before Medicare starts paying for prescriptions again. And even then, there are copays and some drugs that are not covered.

* Supplemental insurance may be a problem.

Leah said that the private companies that cheerfully sell supplemental insurance to those 65 and older on Medicare do not want to insure people like me, who are on Medicare because we are disabled.

(This is sounding familiar.)

So, Leah suggested checking to see if WSHIP (the health insurance I have now) has a Medicare supplementary plan. She points out that Medicare Part B would be paying 80 percent of the cost of my cancer care, so the supplement only has to cover the other 20 percent.

She also thought that Basic Health (a state program for low-income people) might also have a supplementary plan for disabled people on Medicare.

This was all new information.

So next I'm going to call the state Insurance Commissioner's Office to see what they can tell me, and then I'll call WSHIP.

Ideally, I'd also be able to get some prescription drug coverage as part of the supplemental package--because I have six prescription drugs that I take regularly, not counting the Tykerb. Tykerb will be covered under Medicare Part B. (Part B will cost me $98/month.)

Whether or not I sign up for Part B depends on whether or not I can get supplemental insurance that provides reasonable coverage at a reasonable cost. Otherwise, I'm better off staying with WSHIP.

Even if I do get this all worked out, it's not likely to save me more than $200-$300 a month, but that's a lot when you're on Social Security Disability as I am.

So: Phone calls next.

Read about: Leah deRoulet

Read more:

Medicare Questions

Medicare Help

Tykerb and Medicare

Support this blog:

@ Jeanne Sather 2008.

Medicare Questions

Well, in my usual fashion, I e-mailed god and everyone looking for help with Medicare. This approach is also known as "throwing all the balls in the air"--in other words, it's a shotgun approach to finding information.

I often do this when I'm writing a story on a topic I know nothing about.

And it works. I'm a lot closer to sorting out Medicare and deciding what I should do--drop WSHIP ($800/month premiums plus $2,000/year deductibles)? Join Medicare (a huge unknown)? Or keep both?

The people I e-mailed included a smart friend who is on Medicare, a bankruptcy attorney (and friend), a friend at WashingtonCAN, and a social worker at Swedish. I also had info from readers of my blog. I asked BOTH of my therapists for input.

And I went to the AARP and government Web sites and started reading. As I expected, this info causes the brain to shut off after about 20 minutes. Too complex. Too much information. Too many decisions. And too many unknowns. Not to mention the jargon, although I've learned most of that during my nine years with cancer.

I want to move to Canada!

I wish I had kept track of my time from the beginning, just so I'd know how much time I spent sorting this mess out.

I'm getting closer to getting the help I need, however. The social worker at Swedish said, "It's really not as hard as it looks." !!!! She's the first person to say that, so I figure she probably has a handle on it.

My Questions
So these are the questions I have to start with. It mainly comes down to a cost comparision between Medicare and WSHIP, plus a comparison of what each plan covers.

WSHIP gives me 12 massage therapy visits a year ($840), and 10 talk therapy visits ($800).

Medicare doesn't cover massage therapy, and has limited benefits (I need to find out exactly how much) for talk therapy.

I believe WSHIP covers some household help, although I don't know much about this because I haven't needed it till recently. So I need to call and find out more about this benefit.

Medicare does not cover household help except for some personal care services--help with dressing and so on and nursing care at home. (This is a question, actually, I need to ask the social worker.)

Tykerb, my new chemo drug, is a pill. I've been told by other cancer patients that this will be covered under Medicare Part B, so I won't fall into the infamous "doughnut hole" with Part D, which is the optional prescription drug coverage. Right now, I pay just a copay to get Tykerb, I think the copay is $15 for three months' worth of Tykerb.

Enrollment
According to the government Web site, I will be enrolled in Medicare Part A and Part B this month, as I've been on Social Security Disability for two years as of mid-January. My Medicare cards will come in the mail sometime soon, and the $98 premium for Part B will be deducted from my Disability check every month.

OK, that's good. I don't have to talk to the government to get this started.

Extras
The really big, confusing questions are WHICH Part D plan to enroll in. This is prescription drug coverage, which I definitely need. I have six or eight prescription drugs at any one time, not counting the Tykerb, and they are expensive.

What I need to do is make a list of all the drugs I am taking and take that list with me to the social worker. She may be able to help me decide which Plan D will give me the most coverage. Some drug stores also can figure this out for you, I am told by my savvy friend.

The next huge question is supplemental insurance--which plan, how much will it cost, and what will it cover. Because if I am reading this correctly, Medicare Part B will only pay 80 percent of the cost of my cancer care. For the past couple of years, my care has cost about $300,000/year.

At that rate, roughly, my share would be $60,000.

I think my treatment is going to be less expensive this year, because I went off Avastin (very expensive) and Herceptin (also very expensive) and substituted Tykerb ($3,500/month). But even if my care costs $100,000 this year, without a supplemental plan, my share would be $20,000/year or more on Medicare.

Obviously, I'm better off with WSHIP, which costs me about $11,600/year in premiums and deductibles.

My friend who is on Medicare pays about $450/month for supplemental insurance. My first question is whether companies that offer supplemental insurance are allowed to reject people--because they sure wouldn't want me.

The second is what, exactly, supplemental insurance covers, and if I would be left with any surprise bills. The answer to this is, I don't know yet, but I hope to by Monday afternoon.

Based on what I know now, I'm better off staying with WSHIP.

Then the question I have is whether or not Medicare Part A and Part B, which I am going to get automatically, will cover some of the bills that WSHIP doesn't. Like the deductibles and copays.

And the government expects OLD PEOPLE to figure this out? This is cruel.

@ Jeanne Sather 2008.

Medicare Help

So, as I've mentioned before, I've been stewing about going on Medicare.

Will it really pay all my medical bills? Are there loopholes that I don't know about, besides the infamous doughnut hole in the prescription drug coverage? Am I better off staying with WSHIP (the devil I know) despite the high cost (almost $800/month in premiums, plus $2,000/year out of pocket)?

I really can't afford those premiums when my income from Disability is $1,100/month, plus some extra for Younger Son until he turns 18, which is next summer. And now that my life expectancy is looking a bit better, I don't want to run through all my assets in the next two years ... which I will do if I stay with WSHIP.

On the other hand, how much time can I afford to put into figuring out Medicare? Everyone I talk to (and I've been talking to EVERYONE) agrees that it takes a lot of hours to sort out. But everyone gives me a piece of info to add to the total, and I keep moving on, slowly.

I now know, for example, that my Tykerb should be paid for through Part B, although I don't know what Part B will cost me, and I know that I should get supplemental insurance as well as Medicare--but will that end up costing me as much as I'm paying now?

The answer seems to be, probably not.

So I'e discussed this with both of my therapists in the past few days, hoping that they would know someone I could consult with, even if it cost me money, who could tell me what to apply for and what it would cost and what to expect--because someone like me can't even go a week without health insurance coverage.

And I certainly can't allow my coverage to lapse, for any reason.

The suggestions I got were: Try a social worker at one of my two cancer centers (already e-mailed one); and, Try the AARP.

I'm not a member (yet), but if someone in that office (we're talking the association of retired folks here) can help me, I'll gladly join, even though I've been resisting ever since that first invitation landed in my mailbox on my 50th birthday.

Oh, yes, the AARP knows how old you are--just wait. They'll come for you, before you're ready.

@ Jeanne Sather 2008.

Tykerb and Medicare

I mentioned a little while ago that I am eligible to go on Medicare this month, because it is the two-year anniversary of my becoming legally disabled and going on Social Security Disability.

I've been very slowly gathering info on the pros and cons of being a cancer patient on Medicare, and one worry I had was paying for my Tykerb ($3,500/month) on Medicare because it is a prescription drug, so I thought I would fall into the infamous "doughnut hole" on Medicare Part D.

So this morning I got this e-mail from a reader:

Thought you might be interested since you will start Medicare Disability soon. Have your Tykerb run through on the Medicare Part "B" insurance which will cover the cost of the drug entirely. You will have to search out a drug store which will do it or go through your cancer treatment clinic (if they do distribute drugs). Find a drug store which is hooked up with a rest home where they do the part B insurance and you will be in luck.

I know this because I am on Xeloda and my drug store handles it through the part "B" rather than part "D" of Medicare, therefore, you avoid the "doughnut hole."

Food for thought.. Good Luck in your treatment.

So I need to check this out with Dr. Lee next time I see him, which will be soon, since I need to discuss all of Dr. Livingston's recommendations with him.

Any cancer patients out there who are getting their treatment paid through Medicare, please send me your stories, good and bad. I need to make a decision soon ... Thanks.

Later in the day, I got another e-mail from the same woman, suggesting that I also need to get supplemental insurance to go with the Medicare. Argh. This is going to be work.

The e-mail:

Just make sure you have a supplemental insurance to go along with it.

Not sure if Continental General is available in your area (I'm from Michigan) but it is wonderful as I never have to pay for anything. With cancer treatments it is well worth it. Trust me as I have been on treatments for 9 1/2 years as mine is a reoccurrence that has gone to the spine.

More about Tykerb:

More Tykerb Tales

Tykerb:One Day's Dose

$10,000-plus Worth of Tykerb

@ Jeanne Sather 2008.

Tykerb: One Day's Dose

This is what one day's dose of the new cancer wonder drug, Tykerb, looks like, folks.

Is it any wonder that I've been blathering on about it?

Five orange penny-sized pills, to be taken on an empty stomach, at a cost of about $23/pill. That's more than $3,000/month. Shocking, I know.

The problem for me, aside from choking these down and then dealing with the side effects, is that Tykerb, since I take it at home and it's a prescription drug--rather than a drug that I receive at the cancer center, like Herceptin, which I no longer take, and Avastin and zometa (which I do)--is handled differently by my health insurance company.

I'm OK as long as I stay with WSHIP, the Washington state high risk pool, because WSHIP covers this drug, no matter how reluctantly, but in January I am eligible to go on Medicare, because that is the two-year anniversary of my going on Social Security Disability, and I'm worried about paying for Tykerb on Medicare.

The infamous "Part D" problem, which I don't have a clear handle on yet. When people start talking about a "doughnut" in prescription drug coverage, my eyes glaze over. But now, sadly, I'm going to have to care.

I'll keep you posted as I wade into the murky waters of Medicare.

And I won't be canceling my existing insurance, despite the $800/month premium, until I have it sorted out.

Read more about the doughnut hole, or "donut hole," as they are calling it on the National Writers Union's blog:

More Than 3 Million Seniors Will Fall Into Donut Hole in 2008

@ Jeanne Sather 2007.