Archive for the 'Newspapers' Category

Yanking the Cure Rug Out From Under Lymphoma Patients

In the continuing saga of two “miracle” drugs for those who suffer from non-Hodgkins lymphomas… the fifth most common cancer….

I told you six months ago about Bexxar and Zevalin, the two drugs which can treat non-Hodgkins lymphoma but were not being promoted by oncologists in private practice because they cannot, by law, administer it. That means they cannot profit by it. Remembering that American Healthcare is not about health or care, it’s about sickness and money…. we learned then that these drugs must be administered in (usually academic) medical centers because they have a radioactive component to them. So many oncologists provide infusion services themselves, but are not allowed to administer these two drugs, so they don’t tell their patients about them. I remain angry about that subject.

As if that weren’t difficult enough, there is now a new twist to this story, making it even more difficult for lymphoma patients to get this treatment they need — and deserve to have. According to the New York Times, Medicare has decided to reimburse administration of this drug in 2008 at about half the cost of the drug. Medicare made that determination, it says, based on what hospitals have been billing Medicare for the drug — but hospitals dispute that, saying they would never request reimbursement that would cost them almost $10,000 per patient! Patients need only one treatment, but it’s very expensive because the drug itself is very expensive.

Both hospitals and the manufacturers are confused as to how Medicare put together its reimbursement schedule. They believe errors have been made, and that Medicare’s numbers are wrong.

So here’s how this begins to domino….

Find the rest of this post at the new location of the Every Patient’s Advocate blog….

Maybe Surgery Should be Performed in a Restaurant?

Dr. Betsy McCaughey of RID (Reduce Infection Deaths) pointed out in last week’s Wall Street Journal that when it comes to inspections for bacteria and other infection sources, the restaurants in every state in the nation are held to a higher standard than hospitals or other healthcare physicians.

She points out that inadequate hygiene in hospitals causes 100,000 deaths per year, while the CDC estimates that only 2,500 people die from food-borne illnesses like those that may come from restaurants. And those restaurants are inspected diligently in most areas, and far more than hospitals or other facilities ever are.

And here’s a real question mark. According to her article, prior to 1970, hospitals routinely tested the surfaces in operating rooms, patient rooms, labs and other locations for pathogens. In 1970 these facilities were told to stop testing because it was unnecessary. And now, 37 years later, there has been a 32 times increase in the number of deaths from hospital acquired infections such as MRSA. So why hasn’t the CDC updated its policy?

Dr. McCaughey asks the question in regards to hospitals, doctors’ offices and other facilities, “Why aren’t hospitals and doctors’ offices held to the same standard and inspected regularly? Going to a restaurant is voluntary. Going to a hospital is not.”

As patients, we should be asking these questions, too. And insisting, as we are able, that when we do visit any type of healthcare facility that hands are well washed and sanitized, and that instruments, equipment and other surfaces in the facility have been cleaned and sanitized, too.

Last year, at least 100,000 people didn’t do that insisting. And this year, they no longer have that option.


Learn more about MRSA and other hospital acquired infections at

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WSJ Interviews Every Patient’s Advocate

Not only was I privileged to contribute to an article in today’s Wall Street Journal (You Doctor’s Business Ties are Your Business, Too ) — but I actually learned even more than I knew before from the article!

The question asked by the author, David Armstrong, was whether patients have a right to know about any financial ties doctors have to the treatments they recommend. We discussed that topic last week while he was researching for his story. I told him absolutely I believe patients have a right to know, but it’s not so easy as just asking the question.

What I learned from his column is that there is a proposal in Congress called the Physician Payments Sunshine Act of 2007 that will require companies to publicly disclose any payments of $25 or more to doctors. I also didn’t know that the American Academy of Orthopaedic surgeons has mandated, beginning in January, disclosure of any arrangements made between a surgeon and a company which will relate to treatment. So, for example, if you need your knee replaced, and the surgeon stands to profit from the new knee parts — s/he will need to disclose that to you.

Love it! Both are grand steps forward toward transparency and disclosure…

My contribution to the article was a response to the question whether patients should ask their doctors about financial relationships that might affect their treatment …. my answer might surprise you…. (and you’ll have to read the article to find out why!)

Then, when you’re finished, you’ll be interested in this post, too.

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Stealing Hope – Managing Expectations

While visiting Sarasota, FL a couple weeks ago, I missed this article in the New York Times, When Doctors Steal Hope.

Maybe it’s just as well. I would have been one of the first to add my comments, but maybe my own blog is a better forum for that? My advocacy colleague Julia Schopick made her comment — well thought out, as usual.

The article is a blog/commentary about what happens when doctors tell a family that a loved one will die, only to have that loved one recover and go on to heal. In other words, the doctors have stolen hope — for no good reason, it might seem.

I had the same experience — I was told I would be dead within months and that I needed chemotherapy which, even if I had it, would only buy me an extra year of life.

So did my doctors steal hope? Actually — only to an extent. In fact, because I am of the personality I am, I saw my diagnosis instead as waving a red flag in front of me which just p*ssed me off enough so I could prove them wrong!

That said — what the real bottom line is to this issue is the management of expectations. It’s fairly simple concept, yet, it is violated day in and day out by all parties all the time. It’s true in medicine, but it’s also true in any aspect of life where communications is important — in the workplace, at home, with your spouse or sigO, your children, your friends, anyone at all.

A simple metaphor: Little Johnnie wants a new bicycle. His mother tells him that if he gets all As on his report card, she will buy him a new bicycle for his birthday next July. Little Johnnie works very hard in school and gets one A after the next A after the next — BUT — on one of his report cards, he gets a B in math. He’s very upset with himself.

But Johnnie’s mother buys him a bicycle for his birthday anyway — because the point was for Johnnie to work hard, and that’s what he did.

In this case, his mother managed Johnnie’s expectations — he knew exactly what to expect, and he knew what his role was in making it happen. Ultimately, even though the outcome was a bit different from what was expected, it was win-win for them both.

Suppose Johnnie’s mother had just told Johnnie he had to “work harder” or “get better grades” — meaning — she wasn’t specific enough? Johnnie might have thought Bs were OK — and that would not have gotten him the bike. And everyone would have been disappointed.

The point to this story is just that when we are sick, or a loved one is, there are ways our expectations can be managed to make sure we fall within a set of expectations. Clearly, patients don’t always have control over their health. And clearly, the health care professionals can only do so much. BUT — there are boundaries that can be expressed — for example:

“We’ll keep an eye on your husband, Mrs. Smith. If his blood pressure drops again, we might lose him…. but if it stays stable, there is a better chance he will recover. That’s not a promise because we never know what else can go wrong — but we know his blood pressure needs to stabilize to give him his best chances.”

Then — because Mrs Smith is a wise patient — she will repeat back to the doctor exactly what she heard. (and if the doctor is wise, he will ask Mrs. Smith to repeat it back to him to be sure she is clear on it.)

And if the doctor doesn’t give Mrs. Smith those parameters? Then she should ask! “Doctor, what’s the worst case scenario? And what’s the best case? And based on your experience, what is the expectation?”

It’s communication — plain and simple!! Subtracting –OR providing hope is about words — not about medicine. And asking for clarification, and management of expectations, is how an empowered patient works collaboratively with her doctors.

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More Evidence for the Positives of Apologies

Those of us who work in patient empowerment couldn’t help but notice the results of a Harvard Medical School study released this week about what happens to a relationship between doctor and patient when the physician makes an error. The story was reported in US News and World Report the New York Times and other outlets.

Originally published in the New England Journal of Medicine (NEJM), the commentary called Guilty, Afraid and Alone: Struggling with Medical Error basically says that when a doctor commits an error against a patient, trust is eroded and doctors feel guilty. (Did anyone question this?)

Turns out that in many cases, the patient’s family members feel guilty, too, for not protecting their loved one. Even nurses who lost family members to medical errors reported feeling isolated, and fearing their loved one was going to receive substandard care due to the guilt of those who had imposed the errors. The words “fear” and “rude” and “mistreatment” polka dot the report.

What’s the bottom line? Once again we hear the benefits of apologies by those who have violated trust. Nothing new here at all. Groups like Sorry Works have been talking about this for years. Thirty-four states have enacted legislation to grease the skids. Those doctors who understand the dynamics, even for their wallets, are beginning to get the picture.

Test it here yourself. Another story published within days in Miami, about a 3-year old who died at the hands of medical test administrators — even though the family questioned the procedure. So very sad. And a good illustration of how we feel on the other end of the tragedy when responsibility is taken by the guilty party. Apologies are plentiful, restitution is being made. By the end of the story, you’ll feel bad for the offenders, too — although not nearly so sympathetic as you do for the family, of course.

Doctors and providers — please pay attention. Your patients truly need you to understand the guilt aspects of errors, and then step up to the plate. Your careers, and our health, depend on it.

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From the desk of (10/20/07)….

In the midst of this week’s craziness (WAY too much on my plate at the moment!) I have afromthedeskof.gif few miscellaneous, but no less important, points and thoughts to share. I don’t want them to get lost, so I’ll just put them all here…. a potpourri of information. This may become a Saturday or weekend habit. Seems like a good idea!


My friend and colleague Linda Lowen has become the guide for Women’s Issues. Her new guide site launched about one week ago. Of course, women’s issues are people issues, and health care consumerism and patient safety are people issues, too.

If you have interest in a variety of women’s topics, many of which you may not have considered, some of which you’ll want to cheer, and more than a few that might make you go “hmmmm,” then check out — better yet, BOOKMARK — Linda’s new guide site at I promise you you’ll be fascinated.


I’m leaving Monday for Sarasota, FL — visiting parents (Happy Birthday Mom!) and teaching three patient empowerment workshops while I’m there. If you’re anywhere near Sarasota and want to come by — the more the merrier! I promise you real tools that can help you. Contact Adult and Community Education for the Sarasota School District.

I do love getting out and speaking to groups — patients and providers. If you have need for a speaker, I keep a speaker resume online. Check it out.


Speaking of workshops, I spent Thursday evening teaching my “Diagnosis Detective” workshop. GREAT group of people — very participative. On the way out, one of them reminded me of a saying I have heard before: What do you call a doctor who graduated at the bottom of his class? (The answer: “Doctor”) ouch.


Some of you know I have a “looking for” section to this blog. I get contacted by a variety of people, mostly journalists and producers, looking to make contact with patients to help tell their stories. One posting this week has not been too fruitful, so I’m going to mention it here. If you are anywhere in Central New York State (upstate, not the city!) and are an angry patient who wants to participate in a documentary, the producers would like to talk to you. Learn more on the Looking For…. page.


A handful of people have asked me about the launch of AdvoConnection. It has been delayed (yes, I really do need to update that blog, too). You’ll know why in just a few weeks — a BIG ANNOUNCEMENT! that I can share with you then. I hope.


Tune in again next week for “From the desk of….” ! (OK. well. maybe.)

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. . .This Blog Has Moved!. . .

Where did everything go?

Not far.
We just relocated, that's all.

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