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Archive for May, 2008

An ER Nightmare: Hit to the Psyche and the Wallet

Star Lawrence is a fellow health and medical blogger, commenting almost daily on the state of American healthcare, and her experiences. She’s often funny, and she’s always to the point. One of those “I have to laugh so I won’t cry” types of commentary.

Star sent me a post to share with you, and it has been added to my Guest Posting section. Entitled A Stroke of True Genius, you’ll learn about her latest emergency room adventure, and the nightmare it has created to both her ability to make choices about her healthcare, and her wallet.

It was quite a different experience from my emergency room adventure of 14 months ago, which I shared with you afterwards.

But the bottom line to both posts is the same: being empowered isn’t optional. Our lives, and our life savings, depend on it.

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FDA Tells Merck “NO” — Twice Burned, Twice Shy?

A few weeks ago, the FDA refused Merck Pharmaceuticals permission to sell a newly developed drug called MK-0524A  that combines niacin and a cholesterol drug . Today we learn that Merck has now stopped trials of the drug.

As you know if you read this blog or my other blogs regularly, Merck has been caught with its pants down twice in the past years — first with Vioxx, a pain-reducing drug that the FDA approved, not knowing that Merck had already learned that patients with pre-existing heart problems were dying after taking it. Merck is now paying out billions of dollars to the families of those who died, or people who got sicker from taking Vioxx.

Then earlier this year, Merck, in cohoots with Shering Plough’s eager marketers, finally released study results that showed Vytorin — a very EXPENSIVE cholesterol reducing drug — didn’t work the way they anticipated, and no better than far less expensive cholesterol reducing drugs. At least Vytorin (so far) isn’t considered dangerous. It just doesn’t work like it should.

You know — once burned, twice shy. But now the FDA, and Americans who took those Merck drugs have been burned twice (that we know about!)…. I wonder if this most recent denial of approval doesn’t reflect that?

Thank heavens the FDA is finally putting its foot down and not bowing to the big bucks of big pharma.

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Update: Carmelo Rodriguez’ Ignored and Missed Diagnosis

I first told you about Carmelo Rodriguez last January. He joined the Marines in 1997 and during his induction physical, the doctor found a spot of melanoma, recorded it in Rodriguez’ medical record, but never told him about it.

Over the years, that spot grew, became inflamed, and filled with pus. While in Iraq, the military doctor told Carmelo not to worry about it, it was just a wart. In January of this year, Carmelo died from the melanoma.

Compounding the ignored diagnosis was the fact that the Marines discharged Carmelo to go home and die. Then, because he had been discharged, they refused to pay for his military funeral.

Further compounding this enormous insult to his family, and the tragedy of his loss, is the fact that, by law (called the Feres Doctrine), the military doctor who missed Carmelo’s diagnosis cannot be sued.

Carmelo Rodriguez is back in the news today. The congressional representative from the district in which he lived has introduced a new bill to change that inability to sue. Called the Carmelo Rodriguez Military Medical Malpractice and Injustice Act, it allows soldiers, or the families of lost soldiers, to sue the military doctor who harms the soldier or misdiagnoses him or her.

The question here is fairness. It seems quite unfair to me that an ordinary citizen would have the ability to right a wrong through the courts, but a soldier, the very person who fights to retain that right for the rest of us, doesn’t have that same ability.

I’ll be watching what Congress does with this. I expect you will be watching, too.

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When Egos Transcend Common Sense and Doing the Right Thing

I’ve been reminded twice in the last two days about the oncologist who was a part of my misdiagnosis story. He’s a big part of it; if he hadn’t been such an arrogant SOB, then I probably would not have changed careers to help other patients help themselves.

But most days I don’t even think about him. So two reminders in two days? That’s a double whammy.

The first came yesterday as I participated in the Susan G. Komen breast cancer Race for the Cure. There were almost 8,000 participants, among them several hundred breast cancer survivors. I had the opportunity to speak to a handful of them, and when they were particularly happy about how successful their treatment was, i would ask them who their doctors were.

One woman shared a litany of doctor’s names, among them was the same oncologist I had dealt with. She spoke in glowing terms about all the other doctors, but his name was just a part of the list. Nothing good to say — he was just a participant.

I didn’t comment. I didn’t ask her about her experience with him. I have never shared his name publicly because my goal has never to cast dispersions on him personally. I will confess, however, that if someone is seeking a new oncologist for a second opinion, or for referral purposes, and they have told me he is under consideration, then yes — I have shared my experience. Have I had an influence on which patients have chosen to see him? Yes, I’m sure I have — but not much of one.

Then this morning, I found this article from the New York Times, entitled, “Doctor’s Start to Say ‘I’m Sorry’ Long Before ‘See You in Court.’ And there it is again — that feeling…. argh. He held my life in his hands, and he was so ready to treat me with deadly chemicals for no reason….

One aspect of my dealings with him continues to confound me. He never apologized.

Once my misdiagnosis was proven by the National Institutes of Health, I contacted all the doctors who had participated in the odyssey. Of those who had made mistakes and contributed to the errors, I asked for apologies. I made it clear I was not interested in lawsuits.

All the doctors who had contributed to the mistakes apologized — except the oncologist. In fact, he sent me a long letter outlining why he had done the right things. Never mind the fact that he had never read the results of lab tests indicating one more test was being run — yet he had never looked at the results. Never mind the fact that when I told him I wanted another opinion, his answer to me was “what you have is so rare, no one will know anymore about it than I do!”

There is much in the medical literature these days about the positive outcomes when doctors own up to the mistakes they’ve made. This article from the NY Times is one example. Patients heal better, fewer lawsuits are filed, there are so very many aspects of improved health and service that come as a result of professionals taking responsibility.

It’s too bad for this particular doctor that his ego won’t allow him to do the right thing. On the other hand — had he been more forthcoming, perhaps I would not have been angry enough to make sure these kinds of problems wouldn’t happen to other patients?

We’ll never know. But I sure as heck hope that, as time goes on, he’ll realize his ego is getting in the way of his competency. A good doctor is a decent human being, too. In my opinion? Until he learns to own up to mistakes, he’s not much of doctor.

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Moms With Alzheimers Need Mother’s Day, Too

My Parents

At least I think they do.

I returned a few days ago from spending a week with my parents in Florida. My mother is in a “Memory Support Center” — a too-hopeful title for a place where people who suffer from Alzheimer’s Disease and other dementias can benefit from assisted living and nursing care, plus daily activities for supporting what memory they still have.

Mom was diagnosed with Alzheimer’s disease about nine years ago. It’s been a very long and sad road, especially for my dad who has been at her side, on and beyond what most caregivers, even spouses, provide. He has been there for her through too much thick and even more thin. My sisters and I have worried that her debilitation would be the death of him.

What do you do for a mom who has Alzheimer’s disease and apparently has no memory of even her children?

You do the same as you would do if she remembered every moment of your lives together. Because honoring her and loving her doesn’t change, just because she doesn’t seem to get it. So my sisters and I sent flowers. And when I visited last week, I gave Mom a teddy bear with angel wings and a halo.

And then you do what you need to do to support prevention or cure for this “long good-bye,” so others won’t suffer the same way. To honor Mom, my sisters and I donate to the Alzheimer’s Association, and we walk in the annual fundraising walk each year. We’re doing what we can do.

I hope your family is never touched by this horrible disease. If it is, you may be interested in some of the material found on this blog. If you’d like to share more information about your experience with it, feel free to leave comments in the Alzheimer’s section.

And if you don’t deal with it — count your lucky stars.

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