Behind the Counter Drugs?

When the doctor wants us to take a certain drug, he provides us with a prescription, which we take to the pharmacist to fill.

When we decide on our own to take a drug, we go to the pharmacy to purchase it. It’s considered “over the counter” (OTC) because it’s sitting on a shelf, available to anyone who wants to purchase it. You may remember about a year ago finding fairly empty shelves in the cold and flu section…. it’s because there was an ingredient in those medicines that was being abused.

So now it looks like there may be a new, more formal designation for “behind the counter” (BTC) drugs — meaning — you won’t need a prescription, but you can’t just pick them up off a shelf either. If you want to purchase one of them, you’ll have to ask the pharmacist for permission. That’s what happened to those cold medicines last year. (And I think I remember in my youth (!) that condoms and pregnancy tests were kept there, too?)

The Food and Drug Administration is taking comments on this concept — they want to know what we think about the concept of behind the counter drugs. The drugs in question could range from some of the statins (cholesterol reducers like Lipitor), those cold medicines I mentioned above, insulin, even Viagra might end up BTC.

A bit of background research tells me that locally based pharmacies think it’s a great idea — no doubt it’s the trust factor. Patients, in particular those without health insurance, think it’s a good idea. Big box pharmacies are afraid of the logistics. OTC manufacturers whose drugs would end up BTC aren’t happy at all. Doctors don’t like the idea because it takes some prescribing out of their control.

Learn more about the pros and cons and other’s opinions at Pharmalot.

What do you think? Let the FDA know: http://www.fda.gov/oc/op/btc/

This is your chance to be heard!

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A Lemon Law for Medical Consumers?

From Hannah Montana to drive-by shootings, there is plenty of interesting news in Cincinnati, Ohio today.  But to me, your friendly patient advocate, an even more fascinating topic was reported in Cincinnati’s news this week:  the possibility of a lemon law for medical consumers.

To me, it’s one of those “now why didn’t I think of that?” ideas!

A woman named Betsey Exline gets the credit here.  Last spring she went for a routine colonoscopy, which was botched, and she ended up with emergency surgery and a stay in the hospital for eight days. 

Nine doctors, the emergency surgeons and the hospital then billed her for the insult.  Can you say “unmitigated gall?”

Should she sue?  She could, although lawsuit cost estimates range into five figures and she’s not getting any younger.

Instead, this very wise woman took a very different approach.  Bless her heart, she’s not looking to make money from this error which she will suffer from for the rest of her life.  She just wants someone to pay her bills.  She just wants someone to recognize that it should not be her responsibility, or her insurance company’s responsibility, to pay for the errors caused by others.

Hello?  Duh!  That just makes so much sense!

So Betsey contacted her local Ohio state representative and is now pursuing the introduction of legislation that would, in effect, force those who caused the errors to pay for the errors — but not through the courts.  Instead the legislation will create a consumer protection process for medical errors. Those who caused the errors will be required to cover the costs that result from their errors.

And if it becomes law?  The doctors win because it will cut down on lawsuits.  The insurance companies win because it will cut down on lawsuits, too.  And the patients win — at least to the extent they won’t have to pay those unfair bills.

(And who will stand in the way?  Of course, those lawyers who handle medical error victim lawsuits.  but that’s another blog post for another day.)

Wish I was in Cincinnati, Betsey.  I’d find you — just to shake your hand.  You’re a fixer of the first order.

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EYEWTK* About Healthcare Costs

(*Everything You Ever Wanted to Know!) About Healthcare Costs

I just came across this interesting website to share with you called Out of Pocket

It’s a good attempt at transparency — the real costs of healthcare — as they relate to the costs of individual services, tests, doctor visits, insurance, treatments, etc.

If you’re willing to participate, they even ask for input of what you have paid in locations all across the US so others can figure out what they will pay.

Transparency is a huge problem in containing healthcare costs. Rare is the patient who calls the doctor’s office to ask what he charges for an appointment, or how much they’ll charge you to test your blood or any other service at any other facility. And because we don’t pay directly for services most of the time (because we instead pay health insurance premiums, and then the health insurance company reimburses) — we are just removed from it. We just don’t know what we are spending.

The links page will take you to dozens of websites that can help you understand the costs better. Very eye opening… give it a look see!

It’s EYEWTK — but please don’t ever be afraid to ask

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Patients: Report Problem Pharma Drugs

Were you a victim of the Vioxx deceptions? Did you ever take Phen Fen or Ketek or Avandia, only to find out you were at increased risk for heart attack or stroke or liver damage — or whatever medical horror may have been the true result of taking the drug?

I could write reams about how these drugs get through the approval process to begin with — but that’s not what will help patients today. Instead, I’m going to tell you about a new resource that involves patients and can benefit patients — one of my favorite kinds of resources!

You won’t find much promotion on this blog — and you never find it in my columns. I just don’t see enough products or services that I think are worth promoting on this website. But last week I heard from some folks who have launched a new website called www.iGuard.org. As near as I can tell, this one can be a winner.

Some background: the Food and Drug Administration (FDA) is the keeper of all pharm drug info. It is up to the FDA to review all drugs and approve or disapprove their ability to be prescribed and sold in the US. Patient-consumers can keep track of those processes on one part of the FDA’s website called MedWatch.

When patients are prescribed a drug that causes them side effects or “adverse reactions,” in particular those that are undocumented for that drug, patients can go to the MedWatch website and report those problems. What happens from there? Not much. The FDA may use the information, but patients aren’t notified, nor can they provide additional input. Eventually, if enough problems are reported by other patients or doctors or hospitals or whatever — then there may be some further research into potential problems with that drug.

That seems like a huge IF to me.

Along comes iGuard.org . A registered patient can upload a list of the drugs they are taking, and reports about those drugs will be sent to them. Included are any pharm drugs, over the counter, supplements, natural remedies, illegal drugs — even caffeine and other substances.

Further, if a patient experiences any problems in taking that drug, the patient can report them back to iGuard.

Yes — patients can participate, and see some results! Unlike MedWatch, there will be feedback as updates sent to the patient when problems are identified.

I tried it myself. I set up a profile — which is done by email address and did NOT ask me for personal information (very good). I got two reports back on each of the drugs I take daily. I was asked to input the name of my doctor so they could report to my doctor. I chose not to do that.

I’m told by the iGuard folks that they gather information from MedWatch, manufacturers and scientific literature.

I did have some pointed questions for them — always keeping that “healthcare is about money” mentality…. how is iGuard paid for? It’s a free service for patients, but of course they need to make their money somewhere.

Their reply, “iGuard received seed funding from Quintiles Transnational Corp and launched in 2007 as a wholly owned subsidiary. It will be funded through the provision of customized research and risk management services utilizing the de-identified data collected from iGuard users. iGuard was launched in 2007 as a wholly owned subsidiary of Quintiles Transnational Corp., the world’s leading clinical research organizations.”

So what does that mean? It means they will be selling the information they gather to certain organizations that are interested (probably health insurance companies) BUT that the information won’t be identified with any certain person (de-identified.)

If you are a patient who is concerned that you may be taking drugs that are causing you problems they shouldn’t cause, or if you have been prescribed a drug that is newly on the market and you are concerned that problems could be identified down the road, this can be a good service for you.

If you have more questions about iGuard, they are doing a webcast and you can participate this Thursday (10/4) at 2 PM eastern. Link here.

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Alzheimer’s Patient “Wakes Up”

Those of you who read this blog know my mother has Alzheimer’s Disease. We began to notice problems almost 10 years ago, and my father, sisters and I have suffered along side her.

Last February, I watched an episode of Grey’s Anatomy, when Ellis Grey, the mother of the main character, “woke up” from her Alzheimer’s Disease for a day. The episode was disconcerting, but hopeful, but frustrating, and raised the question of whether that was really possible.

At the time I could find no references online that spoke to this possibility. I blogged about it. Read the post here.

A few days ago, I heard from Loretta, whose mother had the same experience as Ellis Grey did. Her mother was lucid for hours and hours, talked to all their family members, couldn’t believe she had been “out” for years, got all caught up on family happenings…. The family all witnessed the phenomenon — and they video taped it.

I was flabbergasted by Loretta’s email! I believe every word of it. And Loretta and I have exchanged several more emails since then. She even gave me permission to share it with all of you.

And of course, dozens of questions popped into my head…. One of the biggest was — does this happen more frequently than we realize? Are there others who have had this experience, but when they ask the professionals about it, they are dismissed?

And more importantly — can we learn anything about this disease from those who do “wake up” even if it’s just for a short period of time? Does anyone track it? Have others video taped it?

Loretta tells me that the caregivers at her mother’s assisted living center have witnessed it before with other patients. To those who care for Alzheimer’s patients, this doesn’t seem at all unusual.

But why are there no studies? Why isn’t it part of the literature?

Yes — I do know many of the questions we loved ones must face. If I could have my mother back for just a day, knowing she would later retreat to her Alzheimer’s fog, would I want her to be lucid again? Would it be heartbreaking? Or joyful? What would we talk about? Would she be sad or angry? At the end, would we be sad or angry — or simply thrilled that we enjoyed some “bonus” time with her that had been unexpected?

But all of those questions, in my opinion, pale in comparison to what we could learn — for future sufferers. Does this only occur a few years into the disease? Can we figure out what triggers the awakening? Can we draw conclusions about the biology of it? Does it give us some clues as to where the memories have gone, if they have gone anywhere? And of course, dozens more.

What if we began comparing notes? What if we started tracking the phenomenon?

There are so many possibilities for learning about the disease if we can just corral the experiences!

So I have built a page on this blog where those of you readers who have had experiences, or have questions, can begin to share your thoughts. If it outgrows this blog, then perhaps I’ll start another one.

Link to the Alzheimer’s Reports page here — which also includes Loretta’s email to me.

If you know of other resources about this particular phenomenon, please let me know. (Not just Alzheimer’s resources in general — it’s a huge topic, with excellent resources, and one more won’t contribute to the discussion.) You’ll find contact information at Alzheimer’s Reports.

Talk about patient advocacy!! The strength and purpose of individuals who care — let’s see what we can do!

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Human Microchips? Told You So!

A few months ago I blogged about the push by the manufacturers of RFID chips, radio frequency identification computer chips, to begin implanting them in humans. At the time, I was pretty definite about the cons of the subject. I recommended against the idea in — ahem — the strongest of terms.

A report by the Associated Press (click here to access links to 90 different news outlets) states that in fact, the manufacturer, VeriChip, and the FDA may have ignored studies that linked use of the chips to higher incidents of cancer in pets and mice.

Cancer! So they aren’t just a lousy security risk, they cause cancer, too.

I’ll keep my chips on the poker table or in a snack bag, thank you very much.

Thanks to my security guru, Bob, for the heads up….

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Blamers and Fixers: Which One Are You?

You’d be amazed at the email and postal mail I receive from patients who have been hurt by the medical system. Perhaps not at the numbers — I receive a handful each week. Instead, you’d be amazed at what they ask me to do.

I’ve put the people who write to me about medical errors they have suffered into two categories: The Blamers and the Fixers

The Blamers are those who livid-angry, and they ask me to do things that will help distribute their anger further. They want me to help them write letters to doctors or hospitals or others who have wronged them. They want me to help yank a doctor’s license to practice, or help them sue a provider, or participate in whatever form of punishment they believe is appropriate. In one case, the Blamer was a whistle-blower, and she wanted me to begin publishing her work on this blog or in my columns to bring attention to the plight of whistle-blowers (because no one is paying attention to her own blog.) Another lost both parents to hospital infections. In another case, a man wanted me to publicize his story about the towel that was left in him during surgery because the lawsuit dollars being proposed just weren’t big enough.

Their anger is just so palpable. And I get it! I was there! After my misdiagnosis, I talked to anyone who wanted to listen in hopes it would somehow diffuse my anger.

It didn’t.

My guess is that in many cases, these are people who have been so wronged by the system, that they are grasping desperately for something to fix the wrong. Of course, it can rarely be fixed. Apologies can’t fix the hurt, frustration and pain. They think that punishing the wrong-doers will fix it.

It won’t.

The Fixers are a step beyond. Fixers are people who have been hurt by the system, and have turned that bad experience into something else more positive.

Among my advocate-colleagues, you’d be amazed at how many of us are fixers. Very few have just chosen to take up the cause of patient advocacy out of the blue. Instead, their children have been killed by bad surgeries, or they’ve lost a spouse or parent to a medical error, or a diagnosis has been missed (or misdiagnosed all together) and someone they love — or they themselves — have been treated incorrectly.

The Fixing itself becomes the catharsis for the anger, and it is extremely powerful. Helen Haskell, Ilene Corina, Patty Skolnik, Julia Shopick, Bill Thiel — among many others — are all fixers. They lost children and spouses to a system that didn’t do what it was supposed to do.

In some cases, their work is a spiritual mission. In others, it’s simply their way of dealing with anger. In all cases, they took their anger and sadness and refocused it toward something positive.

I am a Fixer. And I am proud of it.

We, the Fixers, are working toward improving the system that caused us the anger to begin with. We put our voices together and patients and providers are hearing us! We are saving lives with our work. There is NOTHING more powerful, nor cathartic, than saving someone else’s life.

If you find this blog post and you are still one of the Angry Ones, a Blamer, then please consider becoming a Fixer. I promise you, it will make ALL the difference in your quality of life.

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See follow up post: Doctors are Blamers or Fixers, too

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Quick Drugstore Clinics Revisited

Do you have a quick health clinic in a drug or big box store near you?  They are called Quick Clinics, Redi-Clinics, Minute Clinics or other names, and you can drop in at any time for basic needs such as a bad cough, a sprained ankle, or whatever other “simple” ailments you or your children might have.

They are reviewed in today’s NY Times.  Are they a good idea?

I blogged about them a few months ago…. and yes…. for the most part I think they ARE a good idea — but with a few cautions.

But my cautions aren’t those of the NY Times, nor are they the cautions of the American Academy of Family Physicians, or the various State Regulators or the pediatrican groups. 

What are the differences?

My cautions are about the patient’s health, and theirs are about money.

I know, I know — if you read this article, or any of a dozen others written on the subject (cited in my previous blog post), the spokespeople for these various organizations will tell you just how concerned they are about the health of the person who gets treated there. 

But if you read between the lines?  Yeah.  They’re worried about money.  These clinics cut into their income, pure and simple.  A patient has a choice between walking-in (no appointment necessary), waiting 15-20 minutes (instead of who-knows-how-long), being handed his/her prescription on the spot (instead of having to travel to the pharmacy), and paying an average of $18 less than a visit to a traditional doctor’s office.  And $18 is $18.

The AMA calls it “sacrificing quality.”  Pediatricians cite the need to understand a child’s history.  And state authorities are concerned about licensing.  But they are really worried about money.  Because in the case of these quick clinics, patients are bypassing those died-in-the-wool establishments that justify charging way too much money for way too little service.

All that said — there are some real cautions for patients that have to do with their health — so if you are tempted to use one of these quick clinics, please take note:

• Remember that these clinics (and therefore the doctor or nurse practitioner who sees you) do not have your records or your history.  If you are someone who has had challenges, allergies, or reactions to treatments or symptoms in the past, you’ll want to continue seeing your primary care physician.  The clinic provider can’t know what your past history is and could recommend something that makes you even sicker.
• Remember that these clinics are just as interested in selling you the drugs they have on their shelves as they are making sure you get the right medicine.  Your physician will prescribe based on what s/he knows is right.  The clinics will prescribe based on the deals they’ve made with pharmaceutical distributors.  That may not matter — it might still be the right drug — but it might not.
• Drug interactions and contra-indications are a real concern.  With a pharmacist right there, you should be OK, but make sure you take a master list of everything — EVERYTHING — you take on a regular basis, long or short term, and share it with the practitioner you see.  Prescription drugs, yes, but also any pain relievers, vitamins, herbals, etc. 
• Some quick clinics do not accept Medicare or Medicaid, and not all insurance companies will work with them, so ask that question before you see the quick clinic doctor.
• If, in fact, you are really sicker or hurt beyond what you realize, you don’t want one of these quick clinics recommending the next steps — you want that to come from your primary care doctor — or — your specialist.  If you question your situation at all, don’t fool with these quick clinics.  You could end up sicker.

A cautionary tale?  Yes, but no less enthusiasm for a good idea whose time has come.

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The Concept of “Patientude”

I’ve only lived in this health and medical environment for not-quite-three years, and I am always in search of opportunities to learn more.  I attend workshops, interview doctors and other providers, network with others who do advocacy work, talk to other patients, read, read, read, and mostly just listen.  As each day passes by, I learn more.  And the more I learn, the more I realize I don’t know.  Life’s like that.

With each new person I meet (including the air conditioning guy who had to fix our A/C today — thank heavens for the A/C guy!),  I am asked, “Every Patient’s Advocate, huh?  what does that mean?  What do you do?”

Then I have to explain that I’m not a patient’s advocate in the traditional sense.  I don’t really help individual patients with their care.  I have no formal health or medical training.  I hate the sight of blood and I barely passed high school biology. 

So what DO I do?

I write. I speak. I write some more.  I record my radio show.  I give workshops.  I write some more.  All of which could be activities totally unrelated to healthcare. 

I’m a teacher, an author, a webmaster, a speaker, a columnist, a radio talk show host…. all aimed at helping patients help themselves.

Which often begs the question — “If you aren’t a doctor or a nurse or trained in healthcare then how DO you help patients?”  Which then leads me to explain why I do the work I do, and what I hope to accomplish…..

Then, finally, the light bulb went off.  Just last night, I hit on a word — a new word which I now lay claim to.  A word I am inventing, right here and right now… 

I am a teacher and trainer of “Patientude” !  Yes — that’s it!  I help patients develop the ATTITUDE and the skills they need to get the healthcare they deserve. 

It’s not enough to learn how to get ahold of medical records, or how to look up med-speak, or how to decipher a written prescription.  It’s about developing a take-charge attitude, sticking up for oneself, communicating respectfully with providers — and expecting the same in return.  It’s about taking responsibility for one’s own healthcare decisions and then sharing that attitude with other patients so they can develop their OWN patient-tude!

Are you with me?  Do you like that word?  Do you buy the concept?  What do you think?

Patientude.  A word for our times.

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Microchipping for Better Human Health?

The AP issued an article this week (picked up in many pubs, I’m sure — here’s a link) about injecting microchips into humans, in part to improve their healthcare.

The idea is that there are a number of problems we human beings could solve if we just had a microchip implanted in our arms.  For example it could identify us if we needed to enter a nuclear power plant, or it could replace a credit card so we could make purchases, just by walking by a cash register that could read the chip in our arms.  Healthcare-related applications include:  it could figure out who we are if we have Alzheimers or another dementia and can’t find our way home.  Or if we have a life-threatening illness and passed out or could not talk, it would identify the condition we had, such as diabetes or heart problems.  Or it might contain all our health insurance information, or even the list of drugs and doses we take in case someone needed to help us with those things.

The chips are called RFID:  Radio Frequency Identification.  They are the size of a large splinter, and they get injected under your skin. Whatever information is included in the chip can be read by RFID scanners. 

These RFIDs are already used in a variety of non-human applications.  For example, you can get your pet implanted with one and if your pet gets lost, the vet has the scanner that can tell who your pet belongs to.  Or if you keep cattle… well…. I don’t think a major portion of my readers are cattle farmers.  Some maybe, but not too many.

Anyway — call me old fashioned — but let me humbly share my opinion on these human applications for RFIDs.

NO WAY !!  NO FRIGGIN’ WAY !!

Just in case there is anyone who questions how I think about them — I think they are a lousy idea for humans.  There are way too many ways such an identifier could be misused, and almost nothing positive it can do that can’t be handled in some other way.

If I ever want to visit a nuclear power plant, I’ll figure out another way.  If I get Alzheimer’s and my family is worried I will wander away, or if I develop diabetes or heart problems, then I”ll just wear one of those medical ID bracelets.  And if I need to make a credit card purchase, I’ll happily pull the card from my wallet.

Nope.  This slope is just way too slippery.  Don’t even think about it…. well….. unless you want to get your dog back.

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