There aren’t many times that I am left speechless, but this is one of them.

If you are a regular reader of CNN’s Empowered Patient, offered each week by Elizabeth Cohen, then you know there have been any number of outstanding advocates featured. People who work tirelessly to improve our safety, access and navigation through the dysfunctional American healthcare system. Some are healthcare professionals, others are patients just like you and me. Many have lost someone to the system or have suffered a medical error.

This week Elizabeth highlighted six advocates and called them “Empowered Heroes,” citing the fact that each has taken a negative experience with healthcare to transform it into a way to help others. I am privileged to be among them.

Take a moment to read about the other heroes:  Victoria and Armando Nahum who lost their very healthy son to a MRSA infection and now work tirelessly to prevent hospital and community acquired infections, Dr. Tom Ferguson who built one of the first health websites ever created, and coined the term “e-patients,” Ysabel Duron who recognized the need for cancer support among the Latino community, Gilles Frydman who founded ACOR, the Association of Online Cancer Resources, and Michael Cohen who, early on, recognized the problem of prescription drug errors and founded the Institute for Safe Medication Practices.

It’s an honor, a privilege, and in many ways I believe “I’m not worthy!” Well. OK. I’m just not so worthy as so many others. Because this list is only six people.  There are dozens of advocates who work on behalf of all of us to improve the system.

I can only say thank you for the recognition, and — now you know why I am left speechless.

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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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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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Over the years, I’ve had conversations with a handful of health conspiracy theorists. They claim there is a cure for the common cold, but the makers of symptom relief medicines block that cure from making it to the marketplace. OR, they claim certain cancers can be cured, but the cures have been developed by the companies that manufacture the machines and drugs that keep it at bay, and more money can be made over time by keeping someone partially sick instead.

I have no idea who is right or who is wrong. I do believe that these kinds of coverups take place. I’ve read about them and written about them. And I had my own experience with an oncologist who wanted to make money from putting me through chemo when I didn’t really need it.

Several months ago, I blogged about a treatment for lymphoma patients that is kept secret by most oncologists. Since it can only be offered at academic medical centers, meaning most oncologists can’t profit by it, they don’t tell their patients about the treatment which could save their lives. Instead they offer an inferior treatment option that provides profits to them, but doesn’t do as much for the patient as the unmentioned drug administered at another center.

The big problem, of course, is that there are charlatans across the globe claiming to have developed treatments for any malady large or small. Patients diagnosed with a lifelong or life threatening disease or condition seek any small piece of hope, and spend money and waste their time to pursue that hope, only to have their hopes dashed. It’s a sad fact of medicine. And it becomes difficult to weed out who is being truthful.

A few days ago, I was contacted by a physician scientist who asked me to alert you about a cure for kidney disease if it’s caught in the early stages. Now — I’m not a health professional, so I’m very VERY reluctant to showcase these kinds of things, or to comment on them. But I did ask for an explanation of how it works, and it turns out that it is a treatment that is based on genetic code.

It’s based on the concept of personalized medicine. In this case, the genes responsible for kidney disease are reviewed, and, according to David Moskowitz from Genomed, the company that has applied for a patent for this treatment, if the patient is in the earliest stage of kidney disease, then it can be reversed. That’s been documented with more than 1,000 patients, published in a peer-reviewed journal, and the basics are available at PubMed.

Reversed? Good grief — that means cured, doesn’t it? So if that’s true, then why don’t we hear about it in the mainstream press?

The answer, for those who buy in to conspiracy theories, is that the info doesn’t make it to the mainstream because too many others stand to make too much money as long as patients are tied to kidney dialysis, surgeries, drugs and other profit-producing treatments.

I can’t tell you whether this approach for reversal of kidney disease works. But I can tell you that they have applied for a patent — not FDA approval, but a patent. Also, they don’t administer any treatment. Instead, they work with your doctor to help you. It does sound on the up and up, doesn’t it?

So if you are in the early stages of kidney disease, or if you are at risk because others in your family have suffered from kidney disease, you might want to take a look. The same holds true for people with COPD or high blood pressure. They’re developing life saving treatments for those diseases, too.

Conspiracy theories? Just because we’re all paranoid doesn’t mean they aren’t out to make money from us.

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