Alternate Realities

Alternate Realities

My father and I, residing 429 miles apart, live in different universes. Everything looks the same on the surface, but critical differences appear when it comes to health care.

My dad is in his early 80s. I rolled over the half century mark earlier this year.

My dad is the very definition and illustration of what healthy ageing looks like. Despite a bout of colon cancer and accellerated radition and chemotherapy in his mid 70s, and a knee replacement a couple of years ago, he power walks several miles a day before returning home and doing a couple of miles on his stationary bicycle, followed by 30 minutes or so with the weights.

He has an active social life, spending time with friends, taking in concerts, theater and movies. He is still serving on a variety of boards, and blue-skying a new business venture.

I have days where changing from my sleepshirt into a tee and sloppy pants and walking out to my curbside mail box is a workout for me. Some days, I can even make it grocery shopping after a stop at the library and bank. Now that I can do most of my post office purchases and library renewals online, the number of physical trips to those venues is greatly reduced.

Some days I can actually stay awake from the time I get up until the time I go to bed. The only problem is that I may not be able to fully get up until 10:30 AM, and may give up, wracked with pain and crushing fatigue, by 9:30 PM. Other days, I get up at my 'normal time' of somewhere between 6-8 AM, and stay up till 11 PM. Sometimes I don't even have take a 2-3 hour nap!

If something comes up--a doctor's appointment, the occasional election day volunteer work, helping out a friend in need--I can muster the adrenaline push to get through it, though payback really is a bitch.

There are periods of time where I can happily hang out with friends, sitting and knitting while they sit and chat or they do stuff and chat while I sit, just companionably hanging out together. Sorta.

As dreadful as this may sound to relatively healthy folks, it is actually an improvement for me. Woohoo! Life is gooood!

Thankfully, as much as my health problems are a result of bad luck and crappy genes (thanks, Mom, you always said I'd be able to blame you for the bad things in my life), it's the shtarker genes from my dad that has kept me going as long and as well as I have. Yes, well, compared to so many people I know who have been sick with the same tickborne diseases as I have, for as long as I have.

But all of that isn't where our realities separate.

Where he lives, in a major city in Southern California, he has no trouble finding good doctors who will take Medicare. And those doctors rarely have any problem with Medicare paying 80% of Medicare's allowable amount for their billed services.

Where I live, in a major city in Northern California, good doctors can't flee Medicare--or Medicare patients--fast enough. Since there are only 50 or so doctors in all of California who have a clue about tickborne diseases and how to properly diagnose and treat them, our choices are already greatly reduced that we will find such a doctor, period, let alone one that takes Medicare, within a 2-3 hour drive.

Yes, there are still some docs who continue to tolerate Medicare's denial of tests and downgrading of service levels billed. Example: the doctor honestly bills for an intermediate office visit which some Medicare claims reviewer, in his or her infinite wisdom, cuts it down to a brief visit, which pays far less.

Now, one of the differences between my reality and my dad's is that his doctors are reimbursed at an urban rate -- health care providers where he lives get paid more for the same services that providers where I live do, but Medicare considers where I live to be rural, despite the fact that all factors of cost of living and maintaining a practice (rent, salaries, benefits, housing, goods and services, etc.) are about equal.

Most people don't realize that Medicare only pays ~80% of what it considers to be a reasonable and customary amount for the services it covers, not 80% of what the health care practitioner charges for those services. For example: My osteopath charges a total of $198 for a 30-40 minute office visit and osteopathic manipulation. Medicare allows only $117.42, and pays only $93.93. Sure, I pay my copay of $23.49, but that still shorts the doctor $80.58.

Say he sees 8 patients a day, over the course of a week, that's $3223.20 a month that he's not getting. Since his costs to rent the office, pay salary and benefits for himself and his full-time staff of two, plus whatever he pays for bookkeeping and billing, plus malpractice insurance, having too many Medicare patients in any given week/month/year becomes a costly business practice.

With my other doctors, MDs rather than DOs, they have it even worse. Not only does Medicare frequently downgrade their billed service level, but Medicare also denies testing patients need.

For example, I have thyroid disease that really requires several different tests several times a year. Ditto liver function panel tests because so my liver is already not functioning properly and many of the drugs I take (prescription as well as OTC) can cause liver problems on their own. Ditto hearing problems and vision problems. But does Medicare 'get' that? No!

They deny the tests, which means the laboratory that performed them has to go back to my doctors, who then have to sit down and write out justifications for each tests and send the papers back to Medicare to have some thimble-brained reviewer decide whether he or she is feeling generous that day or not.

My dad's reality: Medicare pays for everything, every time, except his 20% copay.

My reality: Medicare denies the annual $3 thyroid test, despite my diagnoses which show extremely abnormal thyroid function which requires thyroid hormones daily to enable me to just get by, as being unnecessary and unsubstantiated by patient history.

But, hey! I have Medicare! It's worse for people who weren't able to work long enough or otherwise earn enough to pay enough in Social Security taxes and so, instead of getting SSD (Social Security Disability) and Medicare when they become too sick to work, they get SSI (supplemental social insurance) and Medicaid (called Medi-Cal in California). These folks are forced to rely on federally funded health clinics, most of which are staffed by a revolving cast of charac- er, doctors. Oh, sure, there are a few good--even great--ones working in these clinics, but they tend to move on within a year or so to private practice. Every new doctor pretty much decides to throw out their new patients' charts and previous doctors' notes and start each case over over again, something with usually involves refusing to renew any prescriptions.

Which Medicaid loves, especially in California, because that means Medicaid pays out less. Medicaid has devised other ways to reduce their drug benenfit payouts, too. Like, only permitting a Medicaid recipient 6 prescriptions a month, and then refusing the pharmacist permission to fill the entire prescription.

Example: my friend Julia is a cancer survivor who has been sick with Lyme disease for 20+ years. She is legally blind, but still drives, because the federally & state funded In-Home Support Services (IHSS) agency took away all of her support hours, so she has no one to drive her and can't afford to pay anyone to drive her, or to use cabs to go to her doctors, labs, and grocery store, each of which are 30 min or so away from the crappy, in-violation-of-most-city-and-county-building-codes hovel she rents.

She takes several prescription drugs daily, one of which is her thyroid medicine which she must take every day for the rest of her life. Medicaid, to drive down costs, only permits her pharmacist to dispense 10 days of thyroid medication at a time. Since a month has an average of 30 days, that means she has to use three of her SIX monthly allowed prescriptions to get one month's worth of thyroid.

For every prescription over the six prescriptions (which includes those 2 thyroid "refills"), and for a long list of drugs, period, she, like other Medicaid recipients, have to go through the Treatment Authorization Request (TAR) process. Even though

"Medi-Cal is a state and federally funded program which pays for medically necessary treatment services, medicines, durable medical equipment, and medical supplies needed by people with disabilities who satisfy income and resource guidelines"

it is apparently the clerks processing Medi-Cal (Medicaid) claims, people who do not hold medical or pharmacy degrees, who decide what is medically necessary or not. Yes, yes, I realize that this is happening all through the insurance industry (and HMOs, for that matter) since insurance companies figured out how to pervert the whole concept of model treatment plans and managed care from being a novel way to care for covered insureds and their dependents, to annually pocketing record profits while reducing and denying coverage and payment.

Which is why Julia's pharmacist has to jump through hoops three times a month just to fill her damn 30 days for $20 thryoid prescriptions, while any man who wants can get his hardon paid for courtesy of the Viagra Medicaid pays for without a TAR. Assuming he doesn't want to get it up more than a couple of times a week.

Of course, my dad's reality differs from mine. He's on only two drugs: Synthroid and Lipitor. His Synthroid costs him less than $15 a month, while the Lipitor he gets free from his doctor who hands him a shopping bag of samples every month.

Unfortunately, my docs don't get that kind of service from the drug company representatives who visit them, and I haven't been able to get any of the drugs I need on an ongoing basis that way. I did qualify for one patient assistance program, for a drug that costs $800-1000 a month here in the US (less than that from Canada, but still too much for me to afford).

Unfortunately, that was only one drug that I will hopefully never have to take again. I did have to buy the second drug in the two-drug protocol, costing me nearly $800 for the 6 months I was on. It would have been over $1000, but when I needed the second 90 days, I went for a less expensive drug, not certain that it would work as well as the one prescribed as part of the protocol.

(For inquiring minds, the drugs were Mepron BID, Zithromax, and then Biaxin, SID. As it was, I should have been taking the Zith/Biax BID, but simply could not afford to. This two-drug combo is the current protocol for treating babesiosis, a disease caused by a tickborne organism that is like a highly complex and evolved distant relative of malaria.)

So, back to reality. My dad pays ~$15 a month, while I go around taking less than I need because I'm averaging $395 a month in prescription drugs and prescribed OTC stuff. I am putting off for the time being starting the next drug protocol my doc wants me on. Well, I have my choice of two. One involves a $250 injection twice a week (making it $500/week for several months). The other is another two-drug combo, one costing about $15/month, the other $503 a month, the latter being Costco's price, arguably one of the cheapest quotes I've obtained for this antibiotic (Ketek).

So, in my dad's reality, Medicare is wonderful, great, all-encompassing, because it pays for everything he needs, no matter which Medicare-participating doctor he sees. He hasn't even bothered to research the various drug plans because he simply doesn't need one.

In my reality, things just went from bad to worse: the doctors who were treating my tickborne illnesses, thyroid and other hormone problems have opted out of Medicare. That means, if I continue to see them, I have to sign an agreement stating that I understand that any services from here on out are out of my own pocket. I can't pay them and seek reimbursement from Medicare.

Which brings up a common misconception: Many people believe that you can go to any doctor or other health care provider your doctor refers you to, such as a physical therapist, and Medicare will pay for the services.

Wrong.

Medicare will only consider payment for services rendered by physicians and other health care providers who have signed agreements with Medicare. So, when my doctor refers me to what he believes to be the best physical therapist for my particular physical situation, if the PT does not have an agreement with Medicare--which many do not--I have to pay out of pocket. Further, I can't submit my itemized receipts to Medicare for reimbursement directly to me, because they won't consider them for payment.

So, my reality: Medicare already wasn't paying for everything I need, and wasn't reimbursing my main doctors (other than the dermatologist, who is taking care of various pre-cancerous things that are partly genetic, partly the result of liberally frying myself in my younger and oh so foolish days) anywhere near 80% of the amounts they charge for their services, despite the fact that their services and charges are comparable to those charged in Sacramento and San Francisco. Our region is now poorer by two excellent physicians who will no longer accept Medicare's efforts to mange their patients' care.

And, as for my prescription drugs, well, I asked my dad to review the various plans to see what he thinks would be the best for me. It's too much of a confusing mess for me, trying to muddle through them all with the limited information the plans provide ("Plan X covers 89% of the most commonly prescribed drugs" helps me not at all determine if the plan will cover 100% of MY drugs). Turns out its too complicated and unspecific enough for my sharp-minded dad to figure out, too. If neither of us can made a reasonable decision based on the information provided by these plans (and the AARP and Medicare), what hope do other impaired seniors and disableds have?

The answer, of course, is: who cares! As long as the system continues to make arbitrary decisions about who gets paid for what and how much, and is funded by a government who sends billions--trillions--overseas to countries that make it clear how much they hate us, then our own seniors and disableds will fall through the cracks, the message being clear: shut up and die, already, and stop making us waste the time and resources denying your damn claims for services, no matter how much you need them.

And that's why there are millions of us out here who haven't been able to contribute to the local, state and federal tax bases (other than sales tax), and who aren't buying the consumer goods and autos and other things that helps keep our economy going.

How classically hypocritical that they are forcing us to die slowly and painfully, refusing those who wish the option to opt out quickly, by legalizing assisted suicide.

I dare anyone who claims that social security disability and Medicare is a free ride to Easy Street try living on it for a while. Like, the senators and congressmen and federal employees who don't pay into the social security system. Morgan Spurlock and his fiance tried living on minimum wage jobs for 30 days, documented in his 30 Days series episode, Minimum Wage. Both of them ended up needing medical care during that month, with ER and pharmacy bills totaling about $1000 between the two of them. They were lucky: at the end of 30 days, they got to go home and the production company paid all the expenses they weren't able to cover out of their wages.

It doesn't work like that for those of us on SSD. For those of us permanently disabled who can't afford private insurance, it is a life of marginalization, of inadequate medical treatment, inadequate or no assistance in getting through the basics of daily living.

This isn't an issue of race, or ethnicity, or of Red vs. Blue. It is political, however, and the American public is the loser.