Category: Medicine & health

Journeys with mitochondrial disease

Posted by – April 21, 2013

It’s a new world, and those of us who have rare disorders are able to connect with and advise each other like never before. For me and my brother Jamie, the rare disorder is mitochondrial myopathy, and back in 1985 we were told we were among JUST 24 cases identified worldwide of what was then called “primary carnitine deficiency.” Today, “carnitine deficiency” is recognized as merely a symptom of numerous types of mitochondrial diseases, and there are WAAAY more people diagnosed than the two dozen identified in 1985, and some mitochondrial diseases even have names now (like Leigh’s disease, MELAS, MNGIE). Sadly, my type of mito has yet to be identified,

Cartoon of a crying mitochondrion (painted by me). Technically a mitochondrion (singular) but he is representing the sadness of all 1000-2000 mitochondria per cell in my body

Cartoon of a crying mitochondrion (painted by Nick). Technically a mitochondrion (singular) but he is representing the sadness of all 1000-2000 mitochondria per cell in my body

though the uncertainty that it’s really mito is all but gone since the tests results came back negative for every known form of muscular dystrophy earlier this month. I am different than many in that I don’t have neuro symptoms, mainly it is muscle loss so bad there’s nothing left to biopsy, and my body temp overheating constantly, though, judging from the mito bloggers out there, lacking neuro symptoms isn’t as uncommon as I thought.

The United Mitochondrial Disease Foundation—UMDF, which didn’t exist until 1996—says there’s a lot of cases added each year, with “1,000 to 4,000 children in the United states born with a mitochondrial disease” annually. As one of my favorite mito mom bloggers put it, it feels like an epidemic. I’d agree, rates of mitochondrial disease are up, and I think environmental factors are to blame…the fact that we pump pollutants and radiation into the natural world without knowing the potential mito-toxic consequences, and then we eat, drink and breathe from the natural world, and the external becomes the internal as those food materials become the matter you’re made of, the building blocks of the human. But the causes of the mutations that trigger mitochondrial disease understandably take a back seat for people like me and families who’re in daily coping-and-survival mode.

I’ve been following some of the mito blogs, and I am awed at how parents and loved ones of mito children (kids similar to me as a kid) are using the web to support each other. I wish this had been available for me and my mom when I was a kid (back in the 1980s and early ’90s).

As a survivor of childhood mito, I’d really like to share what I know, help others avoid some of what I’ve suffered, be a knowledgable listener and advisor among the mito bloggers, though I know I don’t exactly fit in with the mom blogs. I really want to help, and when I see kids going through what I went through, the BiPap, the chronic pain—which is still a constant battle for me—I really want to talk to, help, that family. And I want to help build a network of mito-activists and mito-knowledge to help those of us dealing with these diseases, who are too often treated horribly by the medical-industrial-complex, like anyone with complex medical needs that are difficult for them to understand. We need a veritable army of people behind us just to survive the system. I’m not sure exactly how to get such a network off the ground. But paired with the experience and knowledge mito bloggers have collectively, such a community could be a game changer.

Speaking of mito knowledge, there’s been controversy recently about the study published in Nature Medicine that proved a link between L-carnitine and arteriosclerosis, gunk in your arteries that causes heart attacks and stroke. Since the study focused on giving L-carnitine to mice with normal microbiota, normal gut processes and digestion, those of us taking daily L-carnitine supplements to treat a mitochondrial disease wonder how this effects us, if at all. With its emphasis on red meat (the most carnitine-rich part of the American diet), the study has been covered heavily all over the mainstream news channels—THIS from CBS News is a representative sample—with a lot of pics of red meat and beef B-roll producers love. When I think of this study, I don’t think of beef, I think of research residents giving mice micro-baby bottles of liquid L-carnitine in their cute mouse mouths, but that’s just me.

Because of this high-profile news and the—not necessarily invalid—concerns about arteriosclerosis, I’m being pushed to discontinue my L-carnitine supplements. The UMDF recently issued a statement urging caution. Because of the specifics of my mito journey, I’m reluctant to drop the carnitine.

I first started taking carnitine through Dr. Zellwegger’s clinical trial for the FDA’s safety and effectiveness human trials 1984-1985, via University of South Alabama, before carnitine was on the market. Literally I’m getting carnitine in my baby bottle. Then we couldn’t get carnitine when the trials ended.
Then in September 1991, when I was 9, I had what I call a “mito collapse” immediately following back surgery and an intense infection at the surgical site. The thin muscle I had was gone in less than a week, the opposite of “slow progression.” I went into a tailspin, ileus, dismotility and malabsorption so extreme that I was put on TPN. All your classic mito symptoms, at least that’s how Mom and I perceived it at the time. It makes sense that, in an inborn error of metabolism, the digestive system—where the heavy lifting of metabolism occurs—would be greatly effected, and BOY was it during this time. My digestive system grinding to a halt, the futile cramping, it was the most horrific thing I had experienced up to that point. For a few months, all I could keep down by mouth was the peach-flavored version of this very specific carbonated water, something like this.
Fortunately, carnitine was on the market, and some time very close to the day I began using the BiPap, I was started on the L-carnitine. Post-levocarnitine, the digestion problems ceased, and I haven’t had any ileus or needed TPN since that time. The supplements seemed to stop the free fall.
Ileus and dismotility haven’t been a problem since, nor has there been another “mito collapse,” though there is pretty much nothing left to lose in terms of muscle, and I have been 24/7 vent-dependent for almost 20 years, 22 years if we count the BiPap. It’s unlikely I could survive another “mito collapse.”

So I’m scared to go off carnitine… but never say never. I would be willing if it’s part of an audit of my entire “mito cocktail”—which since 1996 or thereabouts has been Levocarnitine, B2 and CoQ10—in totality, with other things changed, added, a systematic approach.

Each of our journeys with mitochondrial diseases are different, certainly none are easy, and many days it feels impossible. I really hope we can communicate more, network more, putting our knowledge together and gaining strength in numbers. Please comment below or on Facebook or Twitter.

In mitochondrial solidarity,

Nick

Senator Schumer, Hands Off Our Meds Please

Posted by – February 8, 2012

People in chronic pain need help, more options, more understanding.

[the Institute of Medicine (IOM) report Relieving Pain in America:
A Blueprint for Transforming Prevention, Care, Education, and Research
] Issued at the request of Congress as part of President Obama’s health reform legislation, the report calls for a “cultural transformation” — an attitude shift on the level of that seen over the last 50 years toward smoking — to spur more coordinated action to help treat Americans’ pain. Pain patients have long been viewed with skepticism and suspicion, rather than understanding, presenting a barrier to care. Rising rates of prescription drug misuse, addiction and overdose have further led to the establishment of legal and regulatory barriers, such as prescription databases, that can prevent even legitimate pain patients from getting much-needed drugs.

Source: IOM Report: Chronic, Undertreated Pain Affects 116 Million Americans | TIME.com

It seems Congress is not on the side of transforming the way we help people in pain, they’re on the side of the “skepticism and suspicion” and “legal and regulatory barriers,” not to mention the fear mongering over pain medications.

Last month, my Senator, Chuck Schumer made local TV news headlines ranting, not just about abuse of prescription drugs, but “Rails Against FDA Testing Of Super-Potent Painkillers” as NY1’s headline blared atop their story at www.ny1.com. He doesn’t even want these new medications—extra-strong meds that pharmaceutical companies have created to help people in real pain—to be tested and approved for legal prescription and sale by the FDA for fear of abuse. He’s even saying that FDA approval of new pain meds will “add fuel to the fire” of crime and lead to increased robberies, playing up the recent armed raids for oxy and vicodin at two Long Island pharmacies. Absolutely the height of alarmist rhetoric here.

Since I moved to New York City in 2008, I’ve noticed that Senator Schumer tends to make local news across the state with big, scary headlines (in Mobile, AL where I’m from, the U.S. Senators show up as footnotes on the local news, if at all). Team Schumer probably realizes—rightly—that getting his name in the TV headlines that soccer moms and such (i.e. the community-minded folks who tend to vote most, “the likely voter”) might catch as they go through their morning routine or night-time winding down is crucial for his reelection. Schumer

Chuck Schumer, senior U.S. Senator from New York

has evidently always been a “tough on crime”-type of politician, a key supporter of the Violent Crime Control and Law Enforcement Act of 1994 (VCCLEA) that instituted a federal “three strikes and you’re out” life-imprisonment policy, and since the attacks on 9/11, he’s become a big “tough on terrorism”-type of politician. For example, last May, Senator Schumer similarly made the local news across New York State with his plan for a security crackdown on trains, especially pertinent to New York because New Yorkers are some of the train-ridingest people on the continent. See: Schumer calls for ‘do not ride’ list for Amtrak – NEWS10 ABC: Albany, New York News. These are the kind of headlines Schumer gets. People concerned about unnecessary, Fourth Amendment-crushing, possibly gropey, searches every time you board a train, including me, complained online.

His camera-hogging ways, I get it. Salon called him a “incorrigible publicity hound,” and that’s ok. Be what you are, man. Embrace it. But this time “going too far” is especially “too far” because it could accidentally hurt people with chronic pain who are already hurting.

Here are the local headlines I’m concerned with:
Schumer warns FDA on danger of newest painkillers | Democrat and Chronicle (Rochester, NY’s newspaper of record)
Schumer Rails Against FDA Testing Of Super-Potent Painkillers – NY1.com (NY1 is a 24/7 cable news channel for New York metro area news)
Sen Schumer: ‘Super Painkillers Could Lead To Violent Robberies’ « CBS New York possibly the fear mongeriest headline of the year, though it does present an alternative viewpoint in the video report if not the text summary.
Senator Charles Schumer warns FDA on danger of new painkillers | 7online.com (WABC-TV, the ABC affiliate for NYC.) Watch the video report embedded below, doesn’t provide an alternative viewpoint!

Only one of these scary headlines includes a balancing, alternate viewpoint within. That’s their most egregious journalistic failure: they only give audiences the scare monger’s viewpoint, they only offer shock words.

First, they are leaving out important context like these are MEDICINES for people in real pain. The context and tone treats painkillers as no different than street drugs, omitting the therapeutic intent and quality of life benefits (very real.) Note the language used by the ABC-7 reporter Lucy Yang, the term the streets repeated twice. “At least one [pharmaceutical company] is past the lab stage and now trying to get this super-drug on the streets by next year.” “Of course, before any such narcotic could hit the streets it would have to be approved by the FDA.” Stopping just short of calling pharmaceutical manufacturers street pushers, there.

More language to red-flag from the channel 7 report, including one of the opening lines, “officials report more deaths [from prescription drugs] than heroin, crack, and cocaine”—which officials, Ms. Yang? Please source such a shocking claim. “Despite that, we’re told attempts are underway to introduce a super-drug” “you don’t have to look far to see the violent and punishing reality of addiction to painkillers” “potent and enslaving” “pure painkiller”

Second, why do all these reports reference the robberies on Long Island?  I disagree that the all-too-common oxy and vicodin hold-ups (which are AWFUL, I don’t want to minimize that) would be effected either way whether the FDA approves new narcotics or not. They are linking two completely unrelated stories, echoing Senator Schumer, for shock effect. Journalists should be questioning the Congress critters, holding their feet to the fire, not mindlessly parroting their press releases. Tying past narcotics violence to the unrelated matter of future possible FDA approval of new narcotics seems like pure fear mongering to me.

Third, a look at Schumer’s own language: “the very same people who try to get our kids to use things like oxycodone and vicodin will start peddling this drug, which when abused is poison.” “It would instantly become the most sought-after drug by addicts and criminals.” From the CBSTV-2 story, Schumer said: “Crooks like Oxycontin and Vicodin, yet you leave the doctor’s office, the dentist’s office, the oral surgeon’s office after you have a root canal, they routinely give you 20 to 30 of these pills. That can’t happen with these new powerful drugs.” He’s simultaneously condemning new drugs and old drugs, and nearly finger-wagging at the whole concept of treating post-surgical pain with narcotics. Wow.

The drug in question, according to the CBS channel 2 video report, is Zohydro. Zohydro is hydrocodone like Vicodin, Lortab and Lorset is, but it’s the first long-acting timed-release capsule hydrocodone created. I have chronic pain; I can’t take any of the time release stuff. However, I know numerous people who could benefit from Zohydro and other new medications. This could be a miracle drug for people who’re allergic to—or for whatever reason can’t use—the only other time release painkiller out there, Oxycontin. I’m sure that, for many, this could be a life-changing medicine; long-acting squelching pain, giving people with chronic pain their quality of life back, liberating them to get out of bed. You don’t see that side of the argument on TV, but the benefits of effective pain management are huge, and important.

People can build up a tolerance to pain meds like bacteria can become resistant to antibiotics, and like humans need new antibiotics, humans need new painkillers. We need new pain meds developed and approved for prescription use. People in chronic pain need more options.
Zohydro is also a good step because it isn’t packed with liver-killing acetaminophen that is so commonly combined with opiates. I reported before on the FDA’s bizarre regulation making opioid-acetaminophen combination meds easier to get than purer alternatives because they figure if people know it can destroy their liver they won’t abuse it. This insanity has led to too many deaths, tragedies, and liver transplants, so the FDA itself has been reconsidering recently.

I’m saying consider another perspective (which the media won’t give you). Medication mostly does have a big positive impact. Don’t block or take away pain meds that are giving people quality of life.

Consider this nursing home and hospice facility perspective:

Timely access to controlled medications also continues to be a challenge in the long-term care setting due to drug shortages and what some consider excessively strict federal regulations.

“The Drug Enforcement Agency’s interpretation of the Controlled Substances Act is one barrier that’s impeding timely access to appropriate controlled medications for nursing facility residents and those enrolled in hospice programs,” notes Jennifer Hardesty, PharmD, FASCP, clinical services manager for Remedi SeniorCare.

There is no question that pain’s effects on quality of life are far-reaching. Not only does pain diminish pleasure and interfere with social relationships and one’s ability to stay active, it is also linked to other debilitating conditions, such as depression and anxiety.

Full article: No pain = all gain – McKnight’s Long Term Care News (disclaimer: only includes nursing home perspective)

In the New York metro area, there’s been an oxy crime wave; it has led to a law enforcement crackdown. Doctors are more reticent to prescribe. Visible DEA enforcement actions have created a very real chilling effect that is making it harder for those already having a hard time with chronic pain.

I have nothing against Senator Schumer as a person, I’m sure he’s a great, affable guy, and I’d love to meet him to work on bringing individualized funding, choice and competition to Medicaid/Medicare instead of “one size fits all.” I’m just saying let’s not accidentally snag people in real pain in the “war on drugs” dragnet, let’s be level-headed, let’s not fear monger.

Prior to his 2003 commencement address at the Rochester Institute of Technology, the RIT website lauded Senator Schumer: In the past 25 years, Schumer has become known as a leader on national issues and a tireless fighter for New York. The Rochester Democrat and Chronicle called him “an accomplished, far-sighted legislator,” while The New York Times wrote that he “is a more serious lawmaker with more rooted values, sounder policy positions and a deeper commitment to the common good.”

All I’m asking, Senator, is please live up to your reputation as a committed fighter for the “common good,” include ailing constituents with chronic pain in that common good, and please be “far-sighted” about how federal drug policy can impact the quality of life of the elderly, the terminally and chronically ill, and disabled populations who live with the most severe pain.

Thanks for reading.

Sincerely,

Nick

When Government Won’t Even Let You Choose What’s For Dinner

Posted by – August 4, 2010

Raw Food Police: When Government Won’t Even Let You Choose What’s For Dinner

This is the ultimate unacceptable act by a nanny state+police state gone awry.

Police Begin “Guns Drawn” Raids on Organic Food Stores in California

LA Times: Raw-food raid (features actual surveillance video of the police storming an organic grocery store, pointing guns at unarmed food workers, demanding to confiscate food property)

Raw Milk Controversy: Raids and Regulations

At issue is raw milk and other unprocessed dairy products. This is why members of the FDA, USDA, California Department of Food and Agriculture, the Los Angeles County Department of Public Health, and the Los Angeles County district attorney’s office invaded the private property of the aforementioned Venice Beach grocery store, Rawesome Foods, and confiscated jugs of raw goat and cow milk, blocks of unpasteurized goat cheese, and yogurt.

Despite the fact that Rawesome Foods has always had a big sign by the front door stating that this is a private membership buyer’s club (ala Sam’s Club) and only members may enter, and states that members take responsibility for their own health choices–all those caveats up front!–the peaceful property was still raided, commando-style. Yelling commands at unarmed citizens while pointing guns at them implies strongly that you’re ready to shoot any uncooperative people! ALL OVER UNPROCESSED MILK!! Unprocessed milk that no one has argued has hurt consumers; they just argue that it lacks government permission.
This has gone way too far into jackboot thug territory for me.

All-organic grocery stores are available here in NYC, so I’m a recent convert to organic eating (though I am not vegetarian by any stretch of the imagination). I’ve become to strongly believe in the power of free enterprise to drastically improve our health (and taste!) choices, plus, through competition, begin to change the awful, immoral and terribly unhealthy practices that are so pervasive in the food industry. The dominant factory farms are chafing from rising competition; their PR hacks have spread dubious “safety concerns” for years (meanwhile their products get repeatedly recalled after hard evidence of salmonella and e. coli). Word has it that the factory farm industry leaned on the FDA and USDA and California Department of Food and Agriculture to begin raiding organic grocery stores. Now they have gotten their wish: the government is taking down competitors FOR THEM.

But my objections go deeper. This is about the ongoing debate over what America IS. Is America supposed to be more and more like a gigantic, continent-sized open air prison? the guards make most of our choices, we have little freedom except to be human batteries (Matrix-style) for the state. Is that what the Founding Fathers wanted for us?

We can’t even choose what’s for dinner anymore? This is so unAmerican. The above articles say it is illegal to buy milk direct from the animal (just like our Founding Fathers did, by the way) in 39 states–ironically, California is one of the 11 states that normally allows it.

People should be free to be put whatever they want into their bodies, from raw eggs and milk, to hard drugs or whatever… even if you argue that certain things cause self-harm and (as do I) advocate strong moral codes, the state still has no sensible reason to interfere with self-harm because self-harm poses no threat to the well-being or freedom of other citizens, and, therefore, the state must be barred from interfering. The role of the police must be to protect us from the interference of others who would diminish our well-being or freedom, and those freedoms include the right to choose. That means that the police should be arresting someone who swipes your beer in public, not doing the swiping themselves (43 states enforce ridiculous open container laws.

How do we end this nanny state+police state tag team that has crushed more of its peoples’ basic civil liberties and human rights than most other developed countries? This IS NOT what the Founding Fathers wanted for us.

Nick

This Song Has Been Stuck In My Head For Over A Week!

Posted by – August 12, 2009

My other half and I have been playing and singing this ode to anesthesiologists (called anaesthetists in Britain) for over a week now! It’s really a classic parody!

Video available in HD:

My favorite lyrics from the song (sung to the tune of Total Eclipse of the Heart) are:

’cause we sometimes check the screen
and every now and then, we write stuff!
And if we have to intervene,
we inject a bit of white stuff!
And we offer to alter the lights,
or the height of the bed,
or fiddle with the radio, change the CD,
we even check the patient, occasionally!!

And if they move, we turn up the vapor,
and then we go back, to reading the paper!

Hat tip to Dr. Latte at Medical Marginalia for showcasing this hilarious song!

You can also see the Amateur Transplants perform this live here!

Nick

Are Pharmacies Operated By 19 Year-Old Girls Safe?

Posted by – August 10, 2009

Once upon a time, I was sitting in class at Spring Hill College, and overheard some pre-class chatter that included a girl mentioning that she worked as a “pharmacy technician” at the CVS Pharmacy my family and I frequently used.  Given that this particular girl was not a day over 20, and was about as engaged in learning as a tree stump (she would actually do her checkbook during important lectures) this revelation didn’t inspire confidence for me. If she made even a simple mistake, like putting the wrong meds in my bag, it could kill. I’m well aware of the dangerous mistakes that can happen in pharmacies, even when a licensed, experienced pharmacist is handling things.

Back in the early 90s, before 19-year-old girl “pharmacy technicians” were the norm, and most medications were prepared by actual licensed pharmacists, we had a serious mix-up with a medicine involving my younger brother.

He was still a baby then, about six years old, and was taking antibiotics (in liquid form). Just in time, we realized the label was papering over the REAL label, which identified it as a powerful anti-seizure sedative that likely would have killed my brother.

Mislabeling kills people. My mom went down to the pharmacy and hit the roof.

Turns out that pharmacist was crazy overworked for weeks and fatigued to the max. Why? the pharmacist shortage, the shortage that would soon force them to delegate much of the work to 19-year-old girls.

That pharmacist was put on forced leave for several weeks.

Because of this pharmacist shortage, much of the work of handling and passing out medications is now done by 19-year-old girl “pharmacy technicians.” Is this safe? In Cleveland, it wasn’t.

Emily Jerry, the 2-year-old daughter of Christopher and Kelly Jerry, suffered an agonizing death after a pharmacy technician gave her a solution containing 23 percent salt at Rainbow Babies & Children’s Hospital on Feb. 26, 2006.

The solution was supposed to be about 1 percent salt. The child was undergoing her final treatment for cancer.

Ohio governor signs ‘Emily’s Law’ forcing standards for pharmacy technicians

The supervising pharmacist, Eric Cropp, was recently convicted of involuntary manslaughter because he didn’t catch the mixing mistake. The young girl pharmacy technician, Katie Dudash, was not charged with a crime after agreeing to testify against Mr. Cropp, who she said approved the IV bag mixture even after she told him she wasn’t sure it was right.

As a result of this high-profile FAIL, Ohio passed “Emily’s Law,” which requires the Ohio Board of Pharmacy to test and certify pharmacy technicians. Emily’s Act, introduced in the U.S. Congress by Rep. Steve LaTourette (OH – 14th) would also require some sort of college training for pharmacy technicians, and I support that idea even more.

Please comment. Are you comfortable with 19 year-old girls with minimal training mixing and arranging your medications? If not, do you see Emily’s Act as a good solution? What should be done?

Nick

(hat tip to Buckeye Surgeon for bringing the Cleveland pharmacy technician fail story to my attention)

Nick And The Not So Happy Hospitalist

Posted by – August 5, 2009

I’ve inadvertently stirred up some shit controversy at one of the major medical blogs, Happy Hospitalist (a hospitalist is a relatively new term for a doctor specializing in the care of hospitalized patients).

Don’t get me wrong, this story is not black and white; there’s plenty of value in much of what “Happy” writes, I’ve gained a lot from his posts explaining the medical payment system and have learned about how government is skewing the incentives toward procedures and the many other failures of government health policy. So, I’ve found it informative,

THATS 15 UNCOMPENSATED MINUTES!

"THAT'S 15 UNCOMPENSATED MINUTES!"

and the frequent discussions useful, and stimulating me to think more and write more. But “Happy”‘s writings often seem the opposite of happy; he routinely complains about doctor’s pay, about being overtaxed by the government (when taxes on the rich are the lowest since the 1920s), about how he has to spend 15 minutes of uncompensated time with this patient and that patient. And how any uncompensated time is SLAVERY. After a paid evaluation is over, if the patient waylays him for 15 minutes asking questions, that’s SLAVERY! He rants about how people, heaven forbid, “feel entitled” to his time! I pretty much ignored that, until he juxtaposed all this with the ostentatious display of wealth in his hospital’s parking lot, revealing that doctors at his hospital ain’t struggling in the least. Then I blew up at him, and earned myself a new post from him focusing on what I’d said.

I may have been too strident in my initial response; I’m sorry for that. And you know what they say about fighting on the internet…. But my point was, you can’t expect me to buy into the “poor uncompensated doctor” shtick, nor can you expect the American people to support loan forgiveness or payment reform, right after showing “Drive Your Lexus To Work Day.” For most laymen, a lot full of Lexuses = doctors at that hospital are doing JUST FINE with the current system, and don’t need us increasing the fee schedule or other government help. Pleading poverty after that is going to go over like a lead balloon. If docs are really united in trying to convince the public to support their agenda, ostentatious six-Lexus-in-a-row displays should probably be avoided.

Not that some doctors shouldn’t complain; primary care physicians are grossly underpaid by our notoriously bad reimbursement system, to the extent it’s reached crisis levels. But primary care docs are mostly objecting to how they only have 10 minutes with patients, how the system harms patient care, how it hurts doctors and their patients; I don’t see many family doctors bitching about being “uncompensated” as they’re sauntering to their BMW and filing their nails. But “Happy”‘s no family practice doctor, and plenty of his posts give off that vibe.

Reading “Happy” complain is more akin to seeing the insurance companies claim poverty. I was accused of jealousy and hating the rich, but that was not my point. My point was that when (relative to most people) you’re swimming in a vault of gold, don’t whine about how unfortunate and enslaved you are! It’s too much, and sticks in my craw. And though there’s a lot I respect about the man (including how he’s built such a popular blog through sheer persistence to post 2-3 times a day) I couldn’t help but speak up on this one.

Nick

Alabama’s Own Regina Benjamin, Advocate For Nick’s Crusade, Named Surgeon General Of US

Posted by – August 1, 2009

Congratulations, Regina Benjamin!!

I couldn’t think of a better candidate for Surgeon General than Dr. Benjamin, and I was surprised and pleased that someone from my old hometown that I am familiar with hit the big-time!

President Obama announces Regina Benjamin as his nominee for Surgeon General

President Obama announces Regina Benjamin as his nominee for Surgeon General

Dr. Benjamin works in a clinic in Bayou La Batre just south of Mobile, Alabama (where I’m from). As far as I know, she’s the first Surgeon General to come directly from the trenches caring for the poor, not a hot-shot surgeon who never sees the outside of a hospital, a public health administrator, or a leading health care CEO well-known among country club political donors. ALL Surgeons General should be from the hands-on world, with experience with the hard realities of getting appropriate health care for America’s poor majority.

No one knows these tough realities better than Regina Benjamin, who is one of the only doctors in the small shrimping town of Bayou la Batre along the Gulf of Mexico, where old French Catholic and old Anglo Catholic families have fished and shrimped for centuries, and South Vietnamese (Catholic) shrimpers fled as war refugees after the Vietnam war ended. Bayou la Batre attracted many Vietnamese families because it’s one of the only rural shoreside shrimping villages in America similar to theirs back home, where they can live in a similar environment and work with fishing nets in the ways their families have for millennia, no need to re-train for a new job. The Vietnamese shrimpers and fishermen have increasingly edged the old shrimping families out of the business with their willingness to live on their boats all season, and a seemingly infinite capacity for thrift, bartering fish for gasoline to run their boats and other clever ways of lowering costs. I once knew an ex-army medic and LPN who’s a direct descendant of Joesph Bosarge, the French-born guy who founded Bayou la Batre with a land grant from Spain in 1786, and he told me a lot about the area. I’ve visited Bayou la Batre a few times. I’ve also talked to several Vietnamese kids about it (some of them I went to high school with; despite being poor they were always #1 in the year-end academic rankings, way ahead of me, though I was high up there). My point is, I know exactly where Regina Benjamin is coming from, and it ain’t the same board rooms and government offices where they found most of the previous Surgeons General. She runs a free clinic, and treats poor whites, poor blacks and poor Asians (often by having one of the English-speaking schoolkids translateinterpret her medical instructions into Vietnamese). Like an early 20th century country doctor, Dr. Benjamin does house calls, and accepts whatever patients can pay, even if they can’t, or even if all they can do is barter her part of their catch. This is a doctor who has risen to the top not through the usual cutthroat tactics, not through being the best at what everyone else is doing, but by charting a different path, advocating for and caring for the most needy, showing us what the focus of the medical world should be, public service.

I first became familiar with Regina Benjamin when I was fighting my famous two-year campaign to get Alabama Medicaid to stop stripping home care coverage for people like me just because we turn 21 (full story here). Local WPMI TV news interviewed her about my fight (as she then was director-designate of the Alabama State Medical Association) and she made supportive comments and said of course Alabama Medicaid should cover those who really need it, and that they’re obviously overlooking some gaps.

Regina Benjamin advocating for Nick's Crusade, August 2001

Regina Benjamin advocating for Nick's Crusade, August 2001

I don’t know of any other doctor who would stick her neck out for justice for kids she’s never met. Dr. Benjamin is a special person, exactly the kind of person who should be put in a powerful position to affect change. This nomination is one thing President Obama is doing RIGHT.

Bayou la Batre is one of the few remaining Catholic fishing communities that still does the annual Blessing of the Fleet in hopes of a bountiful catch that year. Dr. Benjamin is Catholic also, and likely has strong moral convictions that have led her to devote her career to the poor. Her clinic, along with all of Bayou la Batre and much of Mobile (including our backyard), was wrecked by Hurricane Katrina. She rebuilt the clinic, only for it to burn to the ground the night before its grand reopening. Then she rebuilt again. Like a heroine in a Biblical fable or something, each crushing tragedy made her stronger, gained her more support and attention, only pushed her higher. She was awarded the papal cross Pro Ecclesia et Pontifice by Pope Benedict XVI for exceptional service to the people of her diocese.

Incredibly, now Dr. Benjamin has the far-right fringe calling her “baby killer” because she’s never taken a hard-line against abortion (which is understandable from a doctor in an impoverished community that sees too many rapes and pregnancies endangering the mother). Even dumber, people are attacking her for her weight! These critics have probably never been to the Deep South; she is svelte by Alabama standards! And they’re also clueless about the expectations black men have for the women in their community re: size (maybe I should do a post about the differences in cultural expectations).

Anyhow, the haters need to get a grip. This nomination is going to sail through faster than a shrimp boat in a hurricane!

Regina Benjamin is probably Obama’s best nomination yet.

Nick

Opioid-Acetaminophen Combination Painkillers. Easier to Get, Also Easier to Destroy Your Liver

Posted by – July 19, 2009

I’m on Tylenol 3 with codeine. I’ve used it daily since the horrifyingly botched L-rods surgery in 1991 left me in serious pain. I try not to complain, and keep taking the codeine on my schedule to keep the persistent metal-on-bone pain under control. I’ve been reluctant to go to heavier narcotics, and when they put me on methadone in ’93, I would fall asleep in front of friends and family. Bad idea.

You would be surprised that the danger is less the opiates, as humans have been eating opium plants for tens of thousands of years. The danger is from the acetaminophen. It’s toxic to the liver.

Recently, the FDA advisory committee met to issue some recommendations

photo of tylenol capsules, white with red text on each pill reading TYLENOL 500, meaning 500mg

on acetaminophen products, which are “estimated to cause about 450 deaths per year” (source) and are “the most common cause of acute liver failure in the United States.” (source) This is especially true for chronic pain patients; about 42,000 Americans annually have to go to the ER with acetaminophen overdoses, half of which are accidental, and of those unintentional overdose patients with liver failure in the US Acute Liver Failure Study Group’s study, 81% had acute or chronic pain and 63% were taking a narcotic-acetaminophen combination chronically (source). The advisory panel ultimately voted on eleven proposals and passed nine, thus formally issuing those recommendations to the FDA. The recommendation that’s created the most buzz in patient and doctor circles is this one:

Question 7: Do you recommend eliminating the prescription acetaminophen combination products?
Vote: 20 yes (10 saying this was a high priority); 17 no

(Source)

This has been interpreted and widely reported as “FDA advisers vote to take Vicodin, Percocet off market.” Thanks for the misleading reporting CNN! You’ve freaked out patients and raised serious concerns among doctors. Yes, Percocet and Vicodin (the most commonly prescribed drug in the United States) are narcotic-acetaminophen combinations, but that doesn’t mean they’ll be gone; they could re-introduce them without the useless acetaminophen, perhaps renamed. Or do absolutely nothing about the excessive acetaminophen problem and as of May 2015 it seems jack squat has changed on this issue.

This recommendation won’t take Hydrocodone, Codeine and Oxycodone “off the shelves,” but I wish it would remove the acetaminophen from them. For severe pain, the acetaminophen is like trying to defeat Godzilla with a biplane, pretty pointless to begin with! Why has the FDA required that drugmakers compound any opioid medications with other drugs anyhow? Chris at stationstops.com explains it thusly:

Up until now, the FDA has prohibited Hydrocodone (the opiate in Vicodin), from being sold in the United States *unless* it is combined with another drug as a compound – far and away, Acetaminophen being the most popular (and most dangerous).

The question is why did the government insist that, unlike the more powerful opiate Oxycodone (which is available standalone, as Oxycontin), Hydrocodone not be prescribed by itself?

From my amateur research around the net, the answer seems to be some unusually sinister legislation originating from The War On Drugs.

In some patients, Hydrocodone can be habit-forming, and its a popular drug of abuse. The FDA wanted to make sure there was something else in the drug that people *wouldn’t* want to take too much of to discourage abuse.

Introducing Acetaminophen.

Its been known since 1970’s that too much Acetaminophen causes the unwanted side effects such as stomach upset and liver damage. So the FDA figured if that was in there too, people wouldn’t want to take too much of it.

Basically, for all intents and purposes, the FDA made an important and popular drug more harmful to discourage abuse.

Besides the fact that this was completely unethical and has probably resulted in the unnecessary liver damage and deaths of countless Americans (the vast majority legitimately ill patients to begin with), there is yet one more irony to this approach:

Many Vicodin users and addicts likely have no idea whatsoever that the government put Acetaminophen in there in the first place, nor what the reason and consequences of the Acetaminophen component are.

In other words, instead of being dissuaded from abusing the drug as intended, most Vicodin users were likely just thoughtlessly destroying their liver.

Source: stationstops.com: Why the FDA Deliberately Poisoned Vicodin With Acetaminophen

The government needs to rethink this absurd and harmful policy. The large amounts of acetaminophen consumed incidentally by chronic pain patients like me who take a lot of “compound” medication has (at best) marginal clinical value, and carries unreasonable risks. I’ve never benefited from mass quantities of acetaminophen. It’s easy enough to strip the acetaminophen from these meds, leaving only the opioids, and doing so won’t harm anyone. In my opinion, that’s seriously overdue. The FDA should act, though the narrow vote on this particular recommendation leaves that uncertain.

Nick

Beware of “Evergreening”: The Pharmaceutical Scam That Could Cost Your Family Thousands

Posted by – July 18, 2009

Last Friday, I was on the Medicare Part D(rugs) web site (which itself is possibly a conspiracy to break the spirit of the elderly and disabled, and make us give up on life) tabulating my medications and their costs. While crunching the numbers, I found that (as Mom had faced when I was living at home) the antidepressant Lexapro was the biggest expense, totaling over half the monthly Nick prescription costs!! Lexapro is $134.92 and, because it’s a brand name antidepressant, Medicare Part D will always make you pay 50%, or $67.46, per month!

I did some research on how this burden can be alleviated. Here’s what I learned: no generic Lexapros are available because Forest Laboratories, Inc. got a judge to extend their patent (I wonder how they’d defend that). No generic versions will be able to compete on the market until March 14, 2012.

Further, I learned the single enantiomer or enantiopure drug game is (often) one ploy out of many to “evergreen” drugs A HUGE SCAM.

A Picture of Lexapro tablets

In the case of Lexapro, they had a drug, Celexa (citalopram), and its patent ran out in 2003, opening it to generic competition. So they stripped out only the active molecule in Celexa, creating the enantiopure drug escitalopram, and then marketed it as A NEW DRUG, Lexapro! Lexapro is simply the active ingredient in Celaxa! It’s essentially the same drug! IT’S THE SAME ACTIVE INGREDIENT! Forest Laboratories has always CLAIMED that the new Lexapro with only the single active molecule is more effective than Celexa, and their marketing convinced many doctors of this (and then doctors convinced credulous patients). This, despite the fact that most independent studies show Celexa is just as effective as Lexapro in most cases (source.

Celexa’s patent expired in ’03, but they’ve been able to keep the profits rolling in by slightly modifying it and selling it as a new drug. Within the industry this is one way of “evergreening” drugs.
This video from Doctors Without Borders gives a quick rundown of the evergreening problem in light of India v. Novartis, a court battle over the manufacture of generic chemotherapy meds.
The FDA, the gov’t agency that regulates medications and their marketing (including the nonstop TV ads; “ask your doctor about Ultron!”), decided to open the floodgates to enantiopure drugs, merited and questionable medicines alike. That the regulators allow single enantiomers and other derivative medicines to be marketed as a wholly new drug, not Celexa Plus or something, means the government is an active accomplice in misleading billions (the U.S. pharma industry supplying world markets).  It is a serious travesty.

This scam works so well, and has pulled thousands from countless families, because, like the very best marketing ploys, it’s got that kernel of truth, that nucleus of realness at the center of the electron cloud of B.S.. The “rawer” compound, or racemic mixture, may be a-okay if we’re talking albuterol (also called Salbutamol in international markets) vs. the enantiopure drug Xopenex, especially if you’re accustomed to the side effects of the “whole enchilada” compound, albuterol (brand name Ventolin®).
But do you want to roll the dice on the double-barreled racemic mixture when it’s something uber-delicate like SSRI meds and you don’t know how the right-barrel (“inactive” right-enantiomer) will sit with ya? Feelin’ lucky?

Obviously there have to be tests and clinical trials on the single enantiomer vs. racemic mixture, not an inexpensive undertaking, since in some cases separating the stereoisomers is effectively impossible (Thalidomide is racemic: the enantiomers convert into each other in the body, so its adverse effects can’t be separated out), essential (Naproxen is an effective anti-inflammatory medicine, once its super poisonous enantiomer is removed) or counterproductive (Penicillin only acts against bacteria with both enantiomers intact; it is “stereodependent”).
Not all medicines are as simple as stereoisomers either. A lot of overhead is needed to test drugs. But increasingly, Big Pharma is selling S-enantiomer meds when the enantiopure drug, while more potent, does not strip out real adverse effects or confer other meaningful benefits. The antacid Nexium is probably the most infamous example, a new brand with no clinical benefits, pressed forth with skewed research that (admittedly in the fine print) compared the benefits of 20mg and 40mg Nexium against 20mg capsules of its racemic predecessor Prilosec, just for “evergreening” purposes.

PROTECT YOUR FAMILY from these ploys!

Here is a list of “new” meds that are just the active ingredient (single enantiomer) of older meds! Whenever possible (and safe) to do so, don’t buy the “new” version, get an older generic with the same ingredient, and save your money!

Racemic Mixture Single Enantiomer
Amphetamine (Benzedrine) Dextroamphetamine (Dexedrine)
Ritalin Focalin
Celexa Lexapro
Provigil Nuvigil
Floxin Levaquin
Prilosec Nexium
Albuterol Xopenex
Imovane Lunesta

Source: Single-enantiomer drugs

Talk to your doctor about switching to lower-cost generics. You could be receiving the same clinical benefits at a fraction of the cost!

PROTECT YOURSELF!! It seems the government is in the pocket of moneyed interests and won’t protect us from these scams.

Nick

 

Related Bloggery:
Scott’s Web Log: Evergreening Does Not Refer to Trees

Native Americans Denied Health Care By Grossly Underfunded IHS

Posted by – June 20, 2009

Instead of PAYING THE RENT to the rightful landowners, the White American government stole all the Indians’ land, and now that we control everything, we deny adequate health care on reservations and let them suffer and die.  According to this AP story, the U.S.  spends more on health care for FELONS in federal prison alone (not counting state and county lockups) than we do on Native Americans’ health care    We value convicted criminals more than Indian children.  Nice.

BY MARY CLARE JALONICK, Associated Press Writer
– Sun Jun 14, 7:39 pm ET

CROW AGENCY, Mont. – Ta’Shon Rain Little Light, a happy little girl who loved to dance and dress up in traditional American Indian clothes, had stopped eating and walking. She complained constantly to her mother that her stomach hurt.

When Stephanie Little Light took her daughter to the Indian Health Service clinic in this wind-swept and remote corner of Montana, they told her the 5-year-old was depressed.

This little girl from the Crow Nation, TaShon Little Light, died after the IHS told her family that abdominal pain was all in her head.

This little girl from the Crow Nation, Ta'Shon Little Light, died after the IHS told her family that abdominal pain was "all in her head."

Ta’Shon’s pain rapidly worsened and she visited the clinic about 10 more times over several months before her lung collapsed and she was airlifted to a children’s hospital in Denver. There she was diagnosed with terminal cancer, confirming the suspicions of family members.

A few weeks later, a charity sent the whole family to Disney World so Ta’Shon could see Cinderella’s Castle, her biggest dream. She never got to see the castle, though. She died in her hotel bed soon after the family arrived in Florida.

“Maybe it would have been treatable,” says her great-aunt, Ada White, as she stoically recounts the last few months of Ta’Shon’s short life. Stephanie Little Light cries as she recalls how she once forced her daughter to walk when she was in pain because the doctors told her it was all in the little girl’s head.

Ta’Shon’s story is not unique in the Indian Health Service system, which serves almost 2 million American Indians in 35 states.

On some reservations, the oft-quoted refrain is “don’t get sick after June,” when the federal dollars run out. It’s a sick joke, and a sad one, because it’s sometimes true, especially on the poorest reservations where residents cannot afford health insurance. Officials say they have about half of what they need to operate, and patients know they must be dying or about to lose a limb to get serious care.

Wealthier tribes can supplement the federal health service budget with their own money. But poorer tribes, often those on the most remote reservations, far away from city hospitals, are stuck with grossly substandard care. The agency itself describes a “rationed health care system.”

The sad fact is an old fact, too.

The U.S. has an obligation, based on a 1787 agreement between tribes and the government, to provide American Indians with free health care on reservations. But that promise has not been kept. About one-third more is spent per capita on health care for felons in federal prison, according to 2005 data from the health service.

This photo from the Little Light family shows Thea Little Light, 13, left, and Tia Little Light, 10, with their 5 year-old sister TaShon Little Light, on the Crow Indian Reservation

This photo from the Little Light family shows Thea Little Light, 13, left, and Tia Little Light, 10, with their 5 year-old sister Ta'Shon Little Light, on the Crow Indian Reservation

In Washington, a few lawmakers have tried to bring attention to the broken system as Congress attempts to improve health care for millions of other Americans. But tightening budgets and the relatively small size of the American Indian population have worked against them.

“It is heartbreaking to imagine that our leaders in Washington do not care, so I must believe that they do not know,” Joe Garcia, president of the National Congress of American Indians, said in his annual state of Indian nations’ address in February.

___

When it comes to health and disease in Indian country, the statistics are staggering.

American Indians have an infant death rate that is 40 percent higher than the rate for whites. They are twice as likely to die from diabetes, 60 percent more likely to have a stroke, 30 percent more likely to have high blood pressure and 20 percent more likely to have heart disease.

American Indians have disproportionately high death rates from unintentional injuries and suicide, and a high prevalence of risk factors for obesity, substance abuse, sudden infant death syndrome, teenage pregnancy, liver disease and hepatitis.

May 19, 2008, Obama becomes the first presidential candidate in American history to visit the Crow Nation.

May 19, 2008, Obama becomes the first presidential candidate in American history to visit the Crow Nation.

While campaigning on Indian reservations, presidential candidate Barack Obama cited this statistic: After Haiti, men on the impoverished Pine Ridge and Rosebud Reservations in South Dakota have the lowest life expectancy in the Western Hemisphere.

Those on reservations qualify for Medicare and Medicaid coverage. But a report by the Government Accountability Office last year found that many American Indians have not applied for those programs because of lack of access to the sign-up process; they often live far away or lack computers. The report said that some do not sign up because they believe the government already has a duty to provide them with health care.

The office of minority health at the U.S. Department of Health and Human Services, which oversees the Indian Health Service, notes on its Web site that American Indians “frequently contend with issues that prevent them from receiving quality medical care. These issues include cultural barriers, geographic isolation, inadequate sewage disposal and low income.”

Indeed, Indian health clinics often are ill-equipped to deal with such high rates of disease, and poor clinics do not have enough money to focus on preventive care. The main problem is a lack of federal money. American Indian programs are not a priority for Congress, which provided the health service with $3.6 billion this budget year.

Officials at the health service say they can’t legally comment on specific cases such as Ta’Shon’s. But they say they are doing the best they can with the money they have — about 54 cents on the dollar they need.

Full story: AP: PROMISES, PROMISES: Indian health care needs unmet (worth the read)

It’s their land we all live on, all of it; there should really be acknowledgment of that and the appropriate payments made. The least we can do is PAY THE RENT so tragedies like this don’t have to happen.

Just as Australian band Midnight Oil sang about the Aborigines they got all their land from:

The time has come, to say fair’s fair
to pay the rent, now, to pay our share

Beds Are Burning – Midnight Oil

Nick