In 1996 my health changed. I was diagnosed with leukemia. I knew I was very lucky to have insurance in place because, as many told me, “you’ll never get insurance now!”

Now flash forward 14 years and 10 years after receiving treatment in a phase II clinical trial. I have no evidence of disease and have not had any evidence for 9 years. The drug therapy I received in a trial has now been approved by the FDA and in Europe as the standard of care. People are living well with this leukemia and it is extending life…some people may even be cured.

So I asked the insurance company to consider giving me the ability to change my policy, to take advantage of lower rates and optimize my coverage for a longer life. The word came back today: DENIED. The reason: “Medical history.” File an appeal? “There is no appeal process.”

For all the buzz about us making progress in the war against cancer the word hasn’t spread to the actuaries. They don’t believe it and won’t budge. They refuse to take a risk on a person that is a FORMER cancer patient and deserves a second look in light of medical progress.
Again, since Northwestern Mutual is a top tier company, I am betting the grade B and C companies are surely telling cancer survivors to “take a hike!” This is not right.

The life insurance industry needs a rational policy of evaluating whether a cancer patient may in fact have helped rewrite outcomes for a disease – whether their health outlook may now be truly good or great.  And that their ability to get or revise insurance should reflect that.

I am sure you have horror stories to tell about fighting to get life insurance or make changes. Please tell us and let’s sound off together to try to get things changed!

Wishing you the best of health,
Andrew

First came the story that some women were diagnosed with breast cancer, very early stage, had treatment – including disfiguring surgery – and then found out they never had cancer in the first place. The pathologist goofed, maybe even a second pathologist also misread the biopsies.

How does this happen? Not surprisingly it comes back to the clinical experience of the doctor. Properly diagnosing breast cancer, whether through radiology scans or pathology biopsies is not always easy. And in many communities the general radiologists and pathologists just don’t have enough specialized experience. This leads to mistakes, especially when the suggestions of possible cancer are subtle and minute.

I have interviewed many patients who were misdiagnosed. This comes as a shock to most of us. One would think a definitive diagnosis like cancer – said with certainty by our local doctor would not be uttered unless they were sure. Of course, they were sure. It was just that they based this on bad information, or lack of experience or both. That’s the part they don’t tell you.

So second and THIRD opinions matter, certainly before you go “under the knife.” Seeing a sub-specialist at a major hospital should be part of your plan. Mistakes can still be made but it can lower your risk.

Story #2: The FDA is considering revoking the approval of a breakthrough cancer drug, Avastin, for breast cancer. This would be a turnaround from the accelerated approval given last year. New studies, done by the company (Roche) itself, and at variance with original data, show Avastin does not make much difference for this cancer. Data is stronger in other cancer areas where Avastin has also been approved, and it will still be a multi-billion dollar drug, just not so many billions overall.

I do think Roche should get some credit for not trying to hide or obscure the data. It was last week when GlaxoSmithKline looked terrible when there appeared to be a “smoking gun” internal email where a company doctor said unfavorable study data about the blockbuster diabetes drug Avandia should not see the light of day.

This just goes to show not everyone at a drug company wears a “black hat.” My experience is most people in that industry want to do what’s right for patients. But in the media the Avandia story looked awful. The Avastin story is a reversal of high hopes in breast cancer, but it least it shows a drug company and the FDA working together to do what’s evidence-based and right.

Story #3: There are reports a Duke University cancer researcher, in part investigating breast cancer and with a trial that was enrolling patients, has lied about his credentials. The trial has been stopped. He’s in hot water. And, appropriately, Duke has launched an investigation.

Let’s step back from the facts now to see the impression created from this:

Some women have been harmed because they were mistakenly diagnosed with breast cancer.

Some women with breast cancer had false hope that a new drug could help them live longer and live better.

Some women enrolled in a breast cancer trial where the credibility of the researcher is suspect.

Wow! This looks really bad as I write this. Thank God these are taken from the headlines. As a news reporter I know this totally ignores the reality that most women ARE properly diagnosed, most women DO get effective treatment, and most researchers ARE ethical. It just doesn’t make the paper or the 11 o’clock news.

To set the record straight a bit, I am happy to tell you we’ll be producing an in-depth podcast series soon on advanced breast cancer with the most highly respected guest-experts. It’s our effort to help women have accurate information they can trust. Stay-tuned for details.

Wishing you the best of health!

Andrew

They have a tough job, those government doctors, scientists, and bureaucrats who are charged with assessing the safety and effectiveness of proposed new medical products. As you know, they rely largely on studies presented by the applicants.

The FDA has the power to not approve a new drug or product or even pull it off the market. Right now it is considering limiting or, pulling GlaxoSmithKline’s diabetes drug, Avandia, because of newly discovered data that it may have caused heart attack in some patients – data mysteriously not shown in GSK’s own studies. If the drug is pulled it will cost GSK billions of dollars in lost revenue but, from the FDA’s point-of-view, it will be protecting the public. And, after all, there are safer diabetes drugs on the market as alternatives.

The FDA also is careful when considering approving new drugs. Sometimes applications come from big companies, GSK among them, and other times from small, biotech companies, that have devoted years and hundreds of millions of investors’ dollars to develop a useful, safe, effective new drug.

When it comes to the many forms of cancer, in this age of personalized medicine, increasingly the proposed new drug may be a “niche” product. It may help just a small number of people with a rare condition. And, with an aggressive cancer, it may not cure the cancer but only extend life by weeks or months. Plus, if a drug comes to market, it will be expensive. Biotech drugs are hard to develop and tricky to manufacture.

Over the past few years I have wondered whether the FDA was playing fair as it evaluated these niche drugs from smaller companies that have few resources to challenge or appeal action by the FDA. One such “little guy” is a Seattle company called CTI. A few months ago an FDA panel voted against approving a new drug from CTI called Pixantrone, a drug for an unmet need of treating patients with relapsed or aggressive Non-Hodgkin’s lymphoma. The panel, guided by Dr. Richard Pazdur, effectively the “Czar” of cancer drugs in America, said the drug’s study did not meet the agreed upon endpoint…that it wasn’t effective.

A company spokesman told me they felt betrayed as they had had previous meetings with the FDA to agree upon a smaller sampling of patients than originally proposed and, with that smaller sample, the results were compelling in offering a life extending option to patients who otherwise had none. The company said, with the rare condition and short life span, it was impossible to get the larger sample originally discussed.

I am not a scientist nor a statistician. I can only fall back on what I witnessed with my own eyes and ears about three years ago when I attended another cancer drug advisory hearing shepherded by Dr. Pazdur. As I wrote then, patients got the short end of the stick. Another drug, a “bunt single” for CLL, my disease, went unapproved even though world experts advocated for it. The company went into a tailspin, researchers were laid off and disillusioned, and the type of patients who did well in the trial were denied the drug. My impression then was Dr. Pazdur had too much power and took pleasure in killing off a little guy rather than helping them reach the goaline in an ethical way. I felt patients lost and it sounds like that may have happened again with CTI’s Pixantrone.

Is there just smoke and no fire? Does Dr. Pazdur just have commercial entities expressing sour grapes and is style is only grating but not malicious or does he ruthlessly exercise power Congress never intended for him to have? I lean toward the latter and, in a NY Times article a few months ago, other people did too.

As for Pixantrone, they need to consider an appeal with Dr. Pazdur’s group – obviously to be pursued as they watch over their shoulder every step of the way – or they might try to fund another trial. That costs hundreds of millions of dollars more and patients die while waiting for a new therapy.

My view is someone with a higher pay grade than Dr. Pazdur or a Congressional committee should review his record and the transparency of the process. That would be the right thing for cancer patients who need every edge to beat – or beat back – their life threatening disease.

I welcome your comments and wish you and your family the best of health!

Andrew

Why am I living well 10 years after treatment for leukemia when others, who received the same treatment, are no longer with us?

We are starting to unlock some of the answers as doctors test our bodies to understand the exact biology of our cancers and aim personalized treatment at the offending cancer cells. But so much is not known yet about why one person responds to medicines and another does not.

We also are often clueless why one person develops cancer in the first place and others who live and work alongside them, even identical twins, do not.

That is why statistics can be meaningless. While most people might have a short life with, for example, lung cancer, some people survive. You are the statistic that counts not some bigger number on a page.

That doesn’t mean we all shouldn’t understand reality and understand the odds. But we do need to understand how reality applies – or doesn’t – to our own situation.

Mike Katz, in our recent myeloma webcast, is an inspiration. So is David Smith, the 39 year old Austin, Texas firefighter who was diagnosed with rare adrenal cancer and a featured guest in an upcoming program. One doctor told him he had a short time to live. That was a year ago and now he’s back to work.

My message is don’t buy into the statistics. Never give up hope. And know one other person’s experience with what seems like the same disease may be very different from yours.

And through it all, be a Powerful Patient! And review our coverage of our first “How to be a Powerful Patient” event.

Wishing you and your family the best of health!

Andrew

In a whirlwind face-to-face series of meeting with publishers on a very recent sunny Tuesday in Manhattan I got a glimpse of their angst and did my best to convince them that a book, yes even all sorts of electronic versions and in-the-palm-of-your-hand “aps,” could make them boatloads of money and do the right thing for America’s healthcare consumer (just maybe such a work could be translated into Swedish and do good there in a return of the favor literary effort).

First I was sitting across the table from three female representatives from the huge Bertlesman group – an elevator ride up from a lobby that introduced me to what I quickly called the “Taj Mahal of Publishing.” These women warned me they had tough questions about whether my work, “The Web Savvy Patient,” could sell and how well I could publicize it myself. The editor was gracious and the questions, in the end, weren’t so tough. Did I sell them on taking a chance on patients? No word yet.

After a brief lunch as guest of my very well-known agent (I am lucky to have her!) at a gathering of very well connected New Yorkers hearing the perspective of a writer who has already made it, Ken Auletta of “Googled” fame, it was on to more meetings with publishers. The woman to my right at the luncheon, the sister of U.S. Senator John Kerry, wished me luck. Was this to be the beginning of my New York success story? Was a beleaguered publisher about to recognize an insider’s book about how to separate the online health information wheat from the chaff was worth the risk?

Meeting #2 was with an “inprint” known for its health orientation in books and magazines. Only one representative could make it. They are pulled in so many directions these days. I was passionate once again: my 25 years devoted to producing patient programs – 15 on the Web starting with its inception – helped me know like few others the routes and back alleys to critical health information and where things are headed. I was “eating my own dog food” by now: “The Web Savvy Patient,” was what I dubbed “the American health consumer’s survival guide” as they let their fingers and pc “mice” do the walking across countless web pages promising cures or a return to better health. Again, was I convincing enough that in tight publishing times this guy from Seattle, the far corner of the continent, was worth the risk?

The third and final meeting was a Lexington Avenue bus ride away. My agent was hopeful. The appointment was with her old friend in the book business. He met us in the ground floor lobby with a winning smile, a radio voice, and a fun sense of humor. We were rolling now. And the focus, as the agent admonished, would be almost solely on how to maximize sales by winning over health conscious consumers, ones with diagnoses and ones in top shape, through any and every channel of print and electronic reach. Could Andrew Schorr become your best friend and pathfinder when you are worried about your health and don’t know who to trust online? The online marketing whiz came into the meeting. The discussion turned to “aps.” With the iphone IV coming out and a parade of new smartphones behind it, could this book be the kind of multi-media, muti-format information resource that will get the NY publishing cash register ringing again? I nodded enthusiastically feeling sure you’d vote with your credit cards. I couldn’t tell if the savvy and maybe jaded NY publishing types were nodding too.

As I write this, at 39,000 feet and winging across the Pacific to a Hawaii vacation courtesy of supportive in-laws waiting when we land, I have no idea if the phone is about the ring. Will my dear agent, with her thick New York accent, announce a sale and a successful next step in my venture into becoming an author and doing good for patients, or will the publishing world say either consumers already know what they need to know or they don’t wait to want to hear it from me, a relative unknown (a CNN health reporter already has a book deal about patient empowerment but reportedly says little about the Internet).

I am optimistic and see this as an adventure, no matter what. My right hand person at Patient Power, Blake Shewey, says even a negative response is just another challenge to overcome. Nothing new for me, a cancer survivor, or for many of you readers, probably emotionally strong patients too.

One way or another, “The Web Savvy Patient,” and my take on this online health world will emerge before long. That’s the last chapter. I am confident of that. I just don’t know how the chapters between this one and the last one read just yet. It’s a page turner for me. I’ll keep you updated!

From somewhere over the Pacific and, wherever you find yourself this summer, wishing you the best of health,

Andrew

We stayed at a quaint bed and breakfast called The Blue Goose in the small town of Coupeville, Washington on Whidbey Island northwest of Seattle. It was restful and, with great sunny weather, rejuvenating.

At a bed and breakfast, of course, you typically chat with other people over coffee, egg soufflé, and bran muffins. The experience can be tiresome and too chatty. But sometimes it can be riveting.

It was the latter the other morning as we chatted with Diane about health matters and she shared her pain about two episodes in her life.

The first involved her sister, a woman with a high powered career in corporate business management. In her 50’s she began to forget things she should know. She showed up for family events in the wrong week and at the wrong family member’s house. It was more than being forgetful and this was not at all a “ditsy” woman. The eventual test brought the worst news: early onset Alzheimer’s. The sister was angry and in denial. She started to slide downhill. She moved in with one of her grown children. But the young adult couldn’t handle the stress.

Diane, a nurse, stepped forward. She took sick leave from her corporate job, took her sister into her home and cared for her. After two years, and working only part-time, the stress was too much. Like other care givers of someone with Alzheimer’s, she saw herself cracking and had to seek an outside resource. It happened when Western Washington got hit with rare, heavy snows around Christmas. Diane had dropped her sister off at an adult daycare center that also provided full-time care. Diane was just trying to go to work for a few hours. But the staff urged her to allow the sister to stay over. The roads were too dicey to drive back and forth. Diane acquiesced and so began her sister living full-time at the center, where she still lives today, and Diane began getting her life back.

Diane, a religious woman, was performing a blessing in caring for her sister. But it was also a blessing when she learned to let go. She visits her sister often, she is recognized, and fortunately, the woman with Alzheimer’s seems happy and well cared for. It is still a tragic situation, but Diane and her family are at peace.

The conversation went on as Marty, the owner of the B&B, continued to supply coffee. Diane had another story where the pain lingers. It ties in with our recent program about end-of-life planning and care.

Diane’s father, a man, as she said, who always had projects, had become sick and debilitated. He made it clear he did not want extraordinary measures to keep him alive. But when he faltered in his home in a small outlying city, he was flown by helicopter to a major medical center. His wishes did not go with him. When his wife arrived at the medical center the man was on life support – extraordinary measures he never wanted. He was eventually released but only lived a short time, and did not live well. Diane says his wife, still alive, blames herself for not preventing the medical establishment from using technology to give her husband extra time he didn’t want.

One family’s story of disease, illness, medical care, ups and downs and regrets.

I am sure we all have stories like this. While we wish we could all have good health to a ripe old age and then just die in our sleep, it rarely happens that way to an individual, and surely not throughout a family.

Diane summed up what she learned: with her sister, learn to let go and draw on reliable, caring resources. With her father, take a firm stand on what the patient wants and let everyone know.

It’s tough in these emotional situations to think clearly. Diane admits there’s a wisdom that comes with hindsight. But her experience could be yours or mine. I was taking note. Perhaps you should too.

As always I welcome your comments and suggestions and wish you and your family the best of health!

Andrew

The Issues From ASCO from Patient Power® on Vimeo.

What’s Old is New at ASCO from Patient Power® on Vimeo.

Shifting the Focus to Patients at Medical Conventions from Patient Power® on Vimeo.

The exhibit hall is filled mostly with surgical equipment, imaging and surgical device companies. A few pharmas are here: the makers of pills for erectile dysfunction, enlarged prostate, and overactive bladder. One interesting one is Amgen, a newcomer, setting the stage for understanding of their drug to stop bone destruction from advanced prostate cancer. This is new science for the urologists who are, after all, surgeons.

Seattle’s Dendreon, now with FDA approved Provenge, is here in a big way on the road, like I am, to the big ASCO cancer convention later this week in Chicago. As you may recall, Provenge is a personalized immunotherapy to help men with very advanced prostate cancer activate their weakened immune system to knock back the cancer and lengthen life…for a few months for some men, longer for others. And there’s hope, if used earlier, it could have a more dramatically positive effect.

It’s expensive, like other biotech drugs, approaching $100,000, and it’s an infusion. Urologists are not accustomed to doing infusions. Typically men with advanced prostate cancer are sent off to oncologists for chemotherapy. The question now is will urologists finally invest in infusion rooms and equipment to keep from not “losing” the patient. Some savvy observers here think the answer is yes. After all, a man diagnosed with prostate cancer usually starts with a urologist, why should they ever move on?

It’s not urgent urologists vote with their checkbooks just yet since Provenge capacity is limited. Gearing up started even before FDA approval at the very end of April, and now it’s in full swing. But it will take a year to get to big nationwide capacity where community urologists can more easily get the drug for their patients.

In the meantime it will be interesting to see the jockeying between oncologists and urologists as to who are the prostate cancer docs: one, both, or with the addition of the radiation oncologist too? While there are multi-disciplinary teams at university medical centers, in smaller towns and cities, the docs are small business people who compete. Stay tuned on this one.

I am wrapping up in the “City by the Bay,” which I love dearly, and will soon report for you from the cancer convention in Chicago. Send me comments and questions for the experts as questions@patientpower.info.

Wishing you and your family the best of health!

Andrew