Archive for Ease and Disease

Technically not a black-and-white

Dothan Alabama police car wrapped in pink

Oh, yeah, it’s the same old Panther-bodied Ford Crown Victoria Police Interceptor you’ve known and feared for years, but this one is for a cause:

The idea behind the pink car came from Chris Lee who is the owner of Shift Designs in Dothan.

After serving the Dothan community for eight years, he wanted a way to give back to the community that has been so great to him and his team.

So, he volunteered to wrap a patrol car in honor of Breast Cancer Awareness month.

With the help of Avery Dennison Graphic Solutions, a premiere vinyl and wrap company, they were able to have the supplies donated for the cause.

Pretty spiffy, though the standard Ford dog-dish hubcaps look even tinier than usual.

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That damn night fever

In the event of something happening to me,
There is someone I should probably go to see:

Please tell me this is not the result of someone starting a joke.

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In sickness and in, um, more sickness

I ran this little poll on Twitter, and I am not heartened, if not surprised, by the results:

CFI Care (not its real initials) isn’t dropping the group, necessarily; but the group policy we had is being discontinued, to be replaced by God Knows What. And God, presumably wisely, is keeping His mouth shut.

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Up to the minute

She set her computer on her lap and crossed her legs. For a moment I wondered how she was going to type like that.

“So how do you feel right this minute?” she asked.

Something like this, I thought.

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Quote of the week

The American health-care system in a nutshell, per Chuck Pergiel:

This whole medical insurance debate is complete and utter horseshit. (Heh, my new catch phrase.) What we need is real information, but we’re not getting it. It might be out there, but digging it out would be a lot of work, and why bother? Nobody in power is listening, they are all listening to each other trying to score political points by telling bullshit stories.

Our healthcare system is built on a fantasy, a fantasy that is carefully nurtured by everyone with a financial interest, like doctors, lawyers, insurance executives and media moguls. This fantasy has doctors curing all diseases, patients recovering fully and leading happy, productive lives. Oh, that happens occasionally, and for common afflictions that are well understood, it might even be the norm. But the more people you have, the more variation you have and the more obscure, inscrutable diseases show up. Life is a terminal disease. People spend their lives trying to be happy. They should spend their time getting ready to die.

Health care is a trillion dollar business in this country. All those people who are engaged in the debate over insurance are just trying to influence the trajectory of that money so that more of the random spray that emanates from such a powerful stream will land on them and make them rich. Because even a single droplet from that trillion dollar stream is worth a million bucks.

I take issue with that “getting ready to die” business; I mean, with the death rate seemingly frozen at 100 percent, everyone’s going to go through that routine at least once, if only for a few seconds, and there are enough differences among us to insure that a Standard Preparation Routine would fall under the general heading of “one size fits none.”

That said, there apparently exists no sum of money so small that someone won’t try to get a piece of it: ask the guy who buys 10,000 shares of Consolidated Veeblefetzer at $37.19 and sells them in three minutes for $37.20.

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Reelin in the years

This Rube Goldberg-esque glycoprotein is called reelin:

Crystalline structure of reelin

It’s named for the reeler mouse, a mutant with really terrible motor skills.

Reelin is a complicated chemical found floating around in your body. Near as I can tell, it has some influence over the central nervous system. I got onto this from a Reddit link to a Wikipedia passage about schizophrenia, one of my least favorite diseases.

It’s a busy little substance:

Reelin has been suggested to be implicated in pathogenesis of several brain diseases. The expression of the protein has been found to be significantly lower in schizophrenia and psychotic bipolar disorder, but the cause of this observation remains uncertain as studies show that psychotropic medication itself affects reelin expression. Moreover, epigenetic hypotheses aimed at explaining the changed levels of reelin expression are controversial. Total lack of reelin causes a form of lissencephaly. Reelin may also play a role in Alzheimer’s disease, temporal lobe epilepsy and autism.

A mere 3,461 amino acids go into this stuff, which sort of reminds me of why I never became a chemist:

I’m not very good at chemistry. Oh, I understand the basics well enough, water is made of two hydrogen atoms and one oxygen atom, but once you get past the basics there is an endless profusion of chemical compounds and I quickly become lost. It’s almost like the English language, you can stick words, or atoms, together in a limitless number of ways. If you use it every day, those combinations will become familiar to you, like the books you have read. But if you don’t immerse yourself in this sea of arcane knowledge it will always be gibberish.

And even then, I suspect, you’re always going to be at least somewhat behind the times.

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BFFs again

Integris Health, the biggest hospital in town, and Blue Cross/Blue Shield, the only insurer left in the federal insurance exchange for this state, were on the outs. Shortly before the pertinent contracts ran out, they kissed and made up.

Yesterday, I got a letter from Integris, signed by CEO Bruce Lawrence, to this effect:

I sincerely apologize for any frustration, inconvenience or concern you experienced during these contract negotiations. Our intent was to negotiate an agreement that would allow Integris to continue to offer the critical services not offered elsewhere in Oklahoma … service you or a family member may need some day. Although we tried to be as reassuring as possible during this process, we recognize the uncertainty the negotiations may have caused you.

Well, yeah, considering the war of words was fought largely in local media, with FUD as ammunition. To bolster that impression, here’s Mr Lawrence again:

I truly appreciate those of you who made phone calls to Blue Cross on our behalf; your efforts made a significant impact.

Of course, this has been the guiding principle of high-zoot health care since the invention of the phrase “Ask your doctor if [hyperexpensive new drug] is right for you.”

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Truly distinguished

All about the Distinguished Gentleman’s Ride:

Our focus is on gentlemen who have been dealt a tough hand in life. In particular, we raise funds for research into prostate cancer and mental health programs as part of our mission to support men’s health globally. These funds are invested by our partners the Movember Foundation, the world’s largest men’s health organisation.

Based in Australia, Movember, whose signature event involves the growing of mustaches, has raised over half a billion dollars in 21 countries.

Jack Baruth will be riding:

I’ve signed up for the Distinguished Gentleman’s Ride next month. It’s a great charity masquerading as a bunch of dickheads wearing suits on dorky motorcycles. I’m planning on wearing a Hickey Freeman pinstripe and riding my Honda CB1100. If you want to throw five bucks towards the cause, you can do it here.

I have done so.

Those of you who hate my guts can be reassured by the fact that it’s almost certain to rain this time of the year and that I’ll basically be spending two hours wrapped in three layers of soaking-wet wool. There’s also a reasonable chance that one of these hipsters who can barely ride a motorcycle by themselves, let alone in a group, will run into me and cut off my leg.

Hmmm. Maybe five bucks isn’t enough.

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Downright cheap, maybe

Try not to look at the digits:

The Food and Drug Administration on Wednesday approved a futuristic new approach to treating cancer, clearing a Novartis therapy that has produced unprecedented results in patients with a rare and deadly cancer. The price tag: $475,000 for a course of treatment.

That sounds staggering to many patients — but it’s far less than analysts expected.

The therapy, called a CAR-T, is made by harvesting patients’ white blood cells and rewiring them to home in on tumors. Novartis’s product is the first CAR-T therapy to come before the FDA, leading a pack of novel treatments that promise to change the standard of care for certain aggressive blood cancers.

Novartis’s therapy is approved to treat children and young adults with relapsed acute lymphoblastic leukemia. It will be marketed as Kymriah.

The generic name of this stuff is “Tisagenlecleucel.” Now, about that price tag:

Novartis picked the $475,000 price tag in an effort to balance patient access to Kymriah while giving the company a return on its investment, said Bruno Strigini, Novartis’s head of oncology, in a conference call Wednesday. The cost is below Wall Street analyst expectations, which reached as high as $750,000 for a dose. And it’s considerably cheaper than the roughly $700,000 price tag that U.K. regulators said would be fair considering Kymriah’s potential benefits.

For one dose?

In a clinical trial, a single dose of Kymriah left 83 percent of participants cancer-free after three months, results oncologists have hailed as a major advance for patients with few other options. The most frequent side effect was an inflammatory storm called cytokine release syndrome, a reaction to CAR-T that can prove fatal in some patients but is commonly controlled with immunosuppressant drugs.

About that CRS:

Deaths due to cytokine release syndrome with OKT3 (muromonab-CD3) have been reported, and it can cause life-threatening pulmonary edema if the patient is fluid overloaded. However, if treated appropriately it is usually not dangerous, just extremely unpleasant for the patient.

I bet it is. And it’s probably unpleasant for one’s insurance carrier as well.

(Via Joanna Blackhart.)

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Monday morning feels so bad

The very first line of the Easybeats’ classic hit “Friday On My Mind” pretty much says it all: Monday morning has little to recommend it. And as Zoe Thomson explains, if you’re fighting a mental illness, “little” dwindles to imperceptibility:

The alarm goes off and I’m tossing and turning, feeling weighted by the duvet but also uncomfortable, not feeling well rested in the slightest. “5 more minutes” I think to myself, a pit of dread sitting nervously in my stomach, but why? It’s another day. I don’t snooze my alarm — I stop it. I hope that I sleep in far too late and I have no choice but to jump out of bed and get out the door. I haven’t got it in me today, just like every other day. The dread fills my stomach until I can no longer only acknowledge it — it’s the only thing I can think about. I feel sick. I feel ill. Maybe I could use that? No, I can’t. I feel so groggy and not very well put together and I wonder how I’m going to do this for another 5 days.

My own issues are more or less out in the open, so you probably won’t be too surprised to hear that my own Monday-morning dread begins about 9 pm Sunday. Bedtime is still two hours away, and I wonder how much, if any, sleep I’m going to get during the seven and a half hours allotted. I’m certainly wide awake that Sunday evening. (The weekly roundup of strange search-engine queries? I did that early Sunday afternoon. Maybe even late Saturday night.) Somehow, I’ve managed to sleep through the alarm only two or three times in the past year. I remember that my work week has shrunk by about five hours since then; and then I recall that what I really want is to have it shrink by about five days. But that’s not happening any time soon.

In fact, the weirdest aspect of all this is that the pertinent song by The Cure is decidedly happier in tone, at least at the beginning:

And here we are, somehow, at Friday, looking forward to the weekend.

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Should have gotten that prescription filled

Seriously demented-sounding individual wants to put up a video-sharing site:

What are the chances of it becoming like Youtube?

Update: What if i told you i have that “hook” store somewhere in my main computer? …

Now what would the chances be?

Update 2: What if i could even use that “hook” on other software i could create. Like maybe another Social Website like Facebook or Twitter or Snapchat. Yeah i could even use that “hook” on Theaters.

Update 3: Imagine the fortune i would have. Yes … i am not lying. I have the software and source code. I created it all by myself.

Problem is i don’t know where to even start. I know i would need investors. Then i would need to settle out somewhere. I live in Texas but i want to move out to California. Yeah. To where every Tech company goes. Silicon Valley. Wonder if Facebook or Google will come down chasing me. You know. To buy my software. I don’t want to sell it. I want to use it and make it grow.

Update 4: I could even use it on Holograms.

0_0 … i could make it to be the richest man in the world.

They probably know already. Or the Illumanti. Knows. They send me a message on my email. I never share my personal email. THEY SOMEHOW send me an email.

They know it could be worth Trillions of dollars.

Update 5: I don’t want the fame i just want the money and the company i am simple man.

Actually, they wanted you to learn how to spell “Illuminati” correctly, you dimwit.

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Why, they aren’t even real drugs

Occasionally you hear of some product or other being recalled because of an FDA order. It’s been a while, though, since I heard of the entire line of a manufacturer being ordered off the shelves:

The U.S. Food and Drug Administration is advising consumers and health care professionals not to use any liquid drug or dietary supplement products manufactured by PharmaTech LLC of Davie, Florida, and labeled by Rugby Laboratories, Major Pharmaceuticals and Leader Brands, due to potential contamination with the bacteria Burkholderia cepacia and the risk for severe patient infection.

The drug and dietary supplement products made by PharmaTech include liquid docusate sodium drugs (stool softeners), as well as various dietary supplements including liquid vitamin D drops and liquid multivitamins marketed for infants and children.

B. cepacia poses a serious threat to vulnerable patients, including infants and young children who still have developing immune systems,” said FDA Commissioner Scott Gottlieb, M.D. “These products were distributed nationwide to retailers, health care facilities, pharmacies and sold online — making it important that parents, patients and health care providers be made aware of the potential risk and immediately stop using these products.”

According to the Centers for Disease Control and Prevention (CDC), B. cepacia poses the greatest threat to hospitalized patients, critically ill patients and people with health problems such as weakened immune systems and chronic lung diseases. The symptoms of B. cepacia infections vary widely from none at all to serious respiratory infections. It can spread from person-to-person by direct contact and is often resistant to common antibiotics.

Geez. What kind of stuff is this?

Burkholderia cepacia is an opportunistic human pathogen that most often causes pneumonia in immunocompromised individuals with underlying lung disease (such as cystic fibrosis or chronic granulomatous disease). Patients with sickle-cell haemoglobinopathies are also at risk. The species also attacks young onion and tobacco plants, as well as displaying a remarkable ability to digest oil.

The FDA announcement contains brand names and descriptions of the recalled drugs.

(Via Glenn Reynolds.)

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Forget your frickin’ network

News Item: Still no deal between Integris and Blue Cross and Blue Shield. Without it more than 150,000 Blue Cross Blue Shield members may have to find a new doctor October 24th and Integris will be out of network August 31st.

Newspaper ad, August 9th:

Bill Shock ad by BCBSOK

The war of words escalates, as it seemingly always does.

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When health care was affordable

A bill from the Community Hospital of Beloit, Kansas, for a patient with appendicitis:

Hospital bill from 1932

Notes Gerard Van der Leun:

Adjusting for inflation since 1932 the cost in today’s dollars would be $2,265.49.

This does not include the surgeon’s fee.

Not that you can expect to pay anything like that to today’s Mitchell County Hospital Health Systems. And there’s this, from five years ago:

[T]he charges for treating appendicitis at hospitals in California ranged from about $1,500 to more than $182,000.

Moreover, patients usually have no idea what their bill will be when they enter the hospital, said study researcher Dr. Renee Hsia, an assistant professor of emergency medicine at the University of California, San Francisco. And those who provide care are usually unaware of how much their treatment recommendations cost, Hsia said.

What’s changed since then? Only the prices, which are higher.

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The big sleeper

In which I press my luck by announcing that for the moment, the worst of my ongoing insomnia seems to have subsided a bit, though I still need all the help I can get.

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And a dash of Veruca Salt

Once upon a time, I inhaled a few particles of what was then called “Nestlé’s Quik.” (It has since been truncated to “Nesquik,” which to me sounds too much like “Bisquick.”) It was nothing like this:

It may sound like one of Willy Wonka’s failed inventions (three course dinner gum, anyone?), but you can now purchase a “snortable” chocolate powder as an all-natural way to get high.

Coco Loko, the latest product from Orlando-based Legal Lean, boasts an intimidating mix of cacao powder, gingko biloba, taurine, and guarana (ingredients most frequently found in energy drinks). The effects are said to be a 30-minute to one hour buzz that is “almost like an energy-drink feeling, like you’re euphoric but also motivated to get things done.”

Yeah, that would definitely intimidate me. But it’s just one more data point to support the theory that chocolate is uniquely useful.

(Via American Digest.)

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Why are we hearing from these people?

If social media are to be believed — and I’m not saying they are — multiple handbaskets are being readied for our trip to the hot nether regions.
The Daily Brief happened upon this comment, and maybe it explains things:

I have often considered that there are a lot more people who have degrees of mental illness out there than we generally realise. Most of the time they can function relatively OK, if surrounded by good people who try and keep them on the path of sanity, however if they are steered in the wrong direction — their inherent bias towards fantasy thinking will mean they go down the wormhole when a more sane person who stop and think “Hang on a minute here!” I think the reason we are seeing more of the misdirection now is the internet — it’s all there on everyone’s Facebook and Twitter feeds, and 100% accessible to all, whereas in the past such people would probably never have been exposed to such twisted thinking. Now they are, and they lack the critical faculties to determine what is true and what is false.

For all I know, there are still people out there who believe that you can’t say something untrue on television, because of federal law or the Seal of Good Practice or whatever. God forbid they should get caught up in the 24-hour cable news cycle.

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Thoughts on a root canal

No, not mine. But I suspect I’d probably have a similar complaint:

How did people manage in the bad old days, the days before we got real pain killers? Oh, just like now, because you can’t get real pain killers any more because of some jackasses in congress stirring up shit for some kind of political game. My dentist won’t even write prescriptions for real pain meds any more because of all the paperwork involved. I am really beginning to hate the government.

Maybe I need to make friends with my local pusher. Medical insurance won’t cover the expense, but you can bet there won’t be any bureaucratic bullshit.

The rather minimal upside: the demand is still high, and there are enough manufacturers of the stuff to keep prices down around where they can be afforded by mere mortals, assuming said mortals can get a note from one of the gatekeepers. Out here we are blessed, or cursed, with facilities that specialize in outpatient treatment of chronic pain, or some comparable euphemism; each of them has a gatekeeper on staff.

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One less additive

Overuse of antibiotics has one well-known unfortunate consequence: the evolution of bacteria resistant to them. Vast quantities of antibiotics are used to dose up livestock and poultry, which doesn’t help matters at all. Fortunately, some fast-food name brands are about to shift to the undosed variety:

The parent company of Burger King and Tim Hortons, Restaurant Brands International Inc., has vowed to stop injecting chickens with antibiotics by the end of 2018.

Neither of these operations is famed for its chicken products, but this one is:

The company, which recently bought Popeye’s Louisiana Kitchen, said that the rule would apply to all brands under its umbrella.

Perdue and Tyson, the top two chicken processors, will be doing likewise, making it easier for the eateries to stick to their pledge.

(Via Fark.)

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Something less than perfect

Finding something wrong with the American health-care system, if “system” it be, is about as difficult as finding weeds in your next-door neighbor’s yard, especially since those weeds will eventually be in your yard. “Why can’t we do it like the Canadians do?” ask some people. Well, we could do worse, and pretty much any tweaking we do to our “system” will insure that we will do worse. Still, parking several billion dollars’ worth of bureaucrats throughout the chain will have similar results no matter whose flag they fly:

I’m curious: what must have happened to provoke the powers that be to make the health care system so inanely bureaucratic that wait times for life-saving surgeries are dramatically increased because of all the referrals for referrals required? Who could it possibly benefit?

I’ve written before about the system. After seeing an oncologist, to get a second visit to arrange to get a referral to a surgeon requires another referral to the oncologist from a family doctor. The same is true of many specialists.

We don’t necessarily do any better down here, and we have the additional complication of checking to see if anyone in the chain is Out Of Network, which will cost us a surcharge of somewhere between 20 percent and infinity.

Imagine the savings to the health care costs if, on the first visit to the oncologist, you were given your options WITH the names and numbers of various doctors to see depending on the decision you make, and then you were allowed to actually call them all by yourself! So once you decide to go with the hysterectomy before the mastectomy, then you DIRECTLY call the gynecologist!! That would be amazing!! But instead, it’s a bizarre, circuitous route from the family doctor to the oncologist to the family doctor to the oncologist (who says this should have been done months ago) and finally to whatever surgeon you need to save your own life.

Rules, rules, rules. And every bureaucracy worthy of the name has someone whose sole interest in life is insuring that all Ts are crossed, all Is are dotted, and no sentence ends with a period followed by two spaces. This is useful for a secondary-school English teacher; it’s not so useful for anyone in the health biz.

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But we want it now

Californians will not be getting single-payer health care this year. Some of them are quite upset about that.

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Stuck for less

The proper response to the upjacking of the price of the EpiPen, courtesy of the FDA:

US regulators have approved new competition for EpiPen, the emergency allergy medicine that made Mylan a poster child for pharmaceutical company greed.

The Food and Drug Administration on Thursday approved Adamis Pharmaceuticals Corp.’s product, which should go on sale later this year.

Symjepi is a syringe prefilled with the hormone epinephrine, which helps stop life-threatening allergic reactions from insect stings and bites, foods such as nuts and eggs, or certain medications.

San Diego-based Adamis says its product is easier to use than Mylan’s EpiPen, a spring-loaded syringe filled with a set dose that comes with a training device.

Symjepi also is smaller than EpiPen, so it’s easier to fit in a pocket or purse.

Yes, but is it kinder to your wallet?

Adamis said it is still lining up a distributor so it hasn’t set the exact price for its product, which will be sold in pairs like EpiPen.

Adamis spokesman Mark Flather said Symjepi is intended to be a “low-cost alternative” to EpiPen and similar products, and the company is aiming to sell it for less than generic EpiPens.

We’ll have to keep an eye out for it.

(Via Fark.)

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Doing that VSG thing

VSG = vertical sleeve gastrectomy, the latest new wrinkle in bariatric (stomach-stapling) surgery. (I learn something every day.)

The “babies” cited will enter first grade and kindergarten this fall, so they’re not exactly infants. (Oh, the things you can be excited for. Me, I was excited by the sight of that Chick-Fil-A van.)

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It’s broccoli, dear

It’s just a little bitty tablet:

A chemical called sulforaphane, found in broccoli sprouts, has previously demonstrated an ability to reduce glucose levels in diabetic rats. Anders Rosengren of the University of Gothenburg in Sweden, and his colleagues wondered whether the same might be true for humans. To test the theory, his team gave 97 people with type 2 diabetes a concentrated dose of sulforaphane every day for three months, or a placebo. All but three people in the trial continued taking metformin. Those who didn’t take metformin were able to control their condition relatively well without it.

The concentration of sulforaphane given was around 100 times that found naturally in broccoli. “It was the same as eating around five kilograms of broccoli daily,” says Rosengren.

On average, those who received the broccoli extract saw their blood glucose reduce by 10 per cent more than those on the placebo. The extract was most effective in obese participants with “dysregulated” diabetes, whose baseline glucose levels were higher to start with.

“We’re very excited about the effects we’ve seen and are eager to bring the extract to patients,” says Rosengren. “We saw a reduction of glucose of about 10 per cent, which is sufficient to reduce complications in the eyes, kidneys and blood,” he says.

Besides, if you tried to eat 5 kg of broccoli, your intestines would be playing the opening to Also sprach Zarathustra.

Journal reference, should you need it: Science Translational Medicine, DOI: 10.1126/scitranslmed.aah4477.

(Via Fark.)

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We didn’t mean to give a fence

In this brief clip, a young moose is freed from a stockade, kinda sorta:

Unharmed and happy. (Mynd you, møøse bites Kan be pretty nasti…)

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How do I look?

Not everyone I’m likely to meet, I’ve discovered, is prepared to deal with someone who walks only with a bunch of equipment.

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Gone far too soon

An email sent to contributors to her medical-treatment fund, which raised somewhere on the far side of $60,000:

We regret to inform you about this sad tragedy.

On Friday January 7, 2013 at 1:30 PM our loved daughter Kiki took her last breath as her heart stopped. She experienced no pain.

It was unexpected and I don’t really know what went wrong. We had hopes that she will recover since progress was made. A few days prior to her leaving us she had issue with “out of range Potassium and sodium levels”. We tried to balance it with proper drugs which also increased her heart rate and lower her blood pressure. The medical team here at CHOC Hospital in Orange County has tried to increase her blood pressure rate with different medication but without success. Around 11:00 Am on Friday we experienced a drastic drop in her heart rate which basically symbolized the end for the medical staff.

I was standing next to her talking, massaging, kissing and hopping that the heart rate will climb back up. I called my friend Tara Strong and together we have tried to encourage Kiki to keep on going. When the heart rate kept on dropping we realized that this is the end. I asked Tara to sing for Kiki the “My Little Mermaid” song since Kiki loved Tara and this song. It was a magical moment; a few of the nurses in the room whispery joined and sang with Tara as Kiki has taken her last breath. Thank you Tara Strong for everything you have done for Kiki.

We have lost the war but not without a fight. There was NO MEDICAL TREATMENT for the type of cancer Kiki had, especially because of the late diagnostic by the hospital in Los Angeles and the Misdiagnosis of the tumor type by the same medical professionals. Without a doubt I feel that Chemo would have been fatal (32 month ago the doctors told us that Chemo may buy us 1-3 month may be a month or two longer if we are lucky). As parents we cannot deny medical treatment to a child if doctors feel it will be effective. Science and the medical industry went a long way but at this point of the game there is no cure for many illnesses including cancer. As parents we must try anything because a cure can come from any one.

And now, the fight goes on:

This fundraiser is to support legal justice for the wrongful death of our daughter Kiki Havivy.

On January 4, 2011, at the age of 5 years old, Kiki Havivy had surgery at Kaiser Permanente in Los Angeles and was diagnosed with a tumor type called PNET. On January 13, 2011, 9 days after her surgery Kaiser doctor Jerry Cheng informed the parents that Kiki had a Highly Malignant cancer called Glioblastoma stage IV. Dr. Cheng gave Kiki up to 6 months to live with a (0) zero chance of survival. While later it was discovered that Kiki’s tumor was misdiagnosed by Kaiser and yet, no one at Kaiser ever questioned the discrepancy in her diagnosis nor did anyone ever do a third opinion as to what the correct diagnosis should have been.

Most of that original $60k came from the brony community; I am somewhat surprised that they haven’t rushed in for this new endeavor. Tara Strong, voice of Twilight Sparkle, duly reported the story to Twitter, and I thank her for that. Maybe I can awaken a few memories in the ponyverse.

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Frozen in position

What do you do when you’re approaching a busy intersection and suddenly the lower half of your body seems to be disconnected from the upper?

This is not a question I’d been spending much time on, until suddenly I had to.

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Keepers of the sacred tablets

Welcome to Rare Disease Month. (Actually, I think that was February, but no matter.) This should make the producers of the few remaining soap operas very, very happy. Look what it did for ABC’s General Hospital:

A recent plot twist … had one character not just getting any cancer, but polycythemia vera (PV), a myeloproliferative neoplasm (MPN). In other words, a rare form of blood cancer for which the standard treatment is blood-letting and anticoagulants.

The TV patient, not satisfied with this prognosis, demands of the doctor, “This protocol sounds like you are treating the symptoms of this cancer; how do we beat it?” “I have to keep going to bloodlettings for the rest of my life?”

Now that’s the beginning of a story arc for the ages. And there’s technical assistance to be had:

Why is GH highlighting this incredibly specific cancer? It’s ostensibly the culmination of a partnership between a company called the Incyte Corporation and the producers of the show to raise awareness for MPNs as part of rare disease month.

Or, you know, not:

But in an opinion piece published this week in medical journal JAMA, Dr. Sham Mailankody of Memorial Sloan Kettering Cancer Center and Dr. Vinay Prasad of Oregon Health & Science University argue that this is really just stealth advertising for Incyte, which just so happens to make only one FDA-approved product, ruxolitinib, which (you can probably see where this is going) is used to treat MPNs, including PV.

Doesn’t sound like an off-label usage. What’s the problem?

But the fictional circumstances could make it seem like ruxolitinib is a first-line therapy for PV, which it is not, the doctors note.

“Instead it has a precise and narrow indication,” they write, explaining that the drug is approved only for patients with an inadequate response or intolerance to chemotherapy, who are dependent on blood-letting, and who have an enlarged spleen.

“Thus, if PV is rare, appropriate use of ruxolitinib in PV should be rarer still,” the doctors say.

On the other hand, you’re not going to see routine stuff like mere strep on General Hospital, fercrissake. And you don’t want to know how much Jakafi (the brand name under which ruxolitinib is sold) is going to cost.

Oh, you do? I checked prices in my neighborhood, and we’re talking $2,800.

For fourteen tablets.

Two hundred bucks, give or take a dollar or three, per tab. If you’re going to be able to afford that, it probably helps to have a steady gig on an ABC soap.

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Let ’em die

“First, do no harm.” This is not technically part of the Hippocratic Oath, but it’s consistent with its values. So naturally, it’s got to go:

Remember that once you change the idea that docs never kill to the idea that killing is mandatory if “asked,” then you get docs (and nurses) who decide to be god and doing the killing spontaneously, or causing a person to die indirectly, not because the treatment won’t really help the patient, but merely because the patient is looked down on as useless, so why not?

An unfortunate incident to illustrate:

Once I worked a few weeks filling in at the ER at one of the IHS hospitals in the Sioux area. While I was giving report to my replacement, a moonlighting resident who worked in Baltimore but flew in to help on the weekend, one of the staff members came in to ask if we would check an x ray that the feeding tube was placed correctly so they could tube feed a lady with a recent stroke until her swallowing ability improved.

The resident, however, said: “Why don’t you just give her morphine, haha”… (implying we shouldn’t feed her but just sedate her into a coma and let her die of dehydration etc). The staff doctor said “WHAT?” and the resident repeated the same thing.

The staff doctor said quietly: “well, we don’t do things that way here,” and left, telling the nurse he would be back later in the evening to check the x ray.

I kept silent, since I had no authority here but knew my next door neighbor was a member of the American Indian movement and would have her group intervene if this was done.

But you know, I wonder how many poor black patients he cared for in Baltimore also got “morphine, haha.”

The black community already distrusts the medical community but since elder suicide is seen as a problem for rich white people, they aren’t worried about this. Yet.

“First, do nothing”?

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