February 25, 2010 - A Time to Act

Today I received an email from Lance Arm- strong’s Livestrong organi- zation. It begins with this call to action, issued in coordination with the American Cancer Society Cancer Action Network:

“Today, our elected leaders in Washington are gathering to continue their debate on overhauling a health care system that fails far too many Americans. We’re hopeful they do the work we elected them to do: break through the gridlock, work together and leave the partisan posturing at the door.”

“Partisan posturing” is right. Along with a great many other Americans, I’m feeling appalled by Congress’ growing dysfunction, especially on the matter of health care reform.

Poll after poll has indicated that this is the number-one priority for the electorate. What’s wrong with our elected officials, that they can’t make any progress on this issue – which for a great many of the uninsured is literally a matter of life and death?

Not that our Senators and Representatives know much about that. Personally, they’ve got some of the best medical insurance around. No part of their health care system seems broken.

Nowhere is this clearer than in an incredibly boneheaded comment House Republican leader John Boehner made to the President at today’s healthcare summit. He gestured towards a copy of the Democrats’ proposal and grumbled, “This right here is a dangerous experiment. A dangerous experiment with the best health care system in the world.”

What planet does that man come from? “The best health care system in the world?” Sure it is, for members of the well-insured elite like Mr. Boehner. Not for most of the people who elected him: whose taxes bankroll his princely medical benefits, that allow him to continue to dwell in such a fantasy world.

Republicans, it’s time to put people ahead of politics and stop your random, mindless obstructionism. Democrats, it’s time to find some nerve, and negotiate from the strength of your majority - filibuster or no.

I invite you to join supporters of Livestrong, the American Cancer Society and myself in signing this bipartisan petition to Congress, urging them to break the deadlock and move forward.

February 20, 2010 - The Senator Joins the Club

News bulletins yesterday focused on one of our U.S. Senators from New Jersey, Frank Lautenberg, who’s just been diagnosed with cancer and will undergo chemotherapy.

Some of the early news stories about the Senator’s condition were shockingly inaccurate. Even the venerable New York Times got it wrong, saying Lautenberg has “stomach cancer.” A subsequent article corrects the error.

What the Senator actually has is the same thing I’ve got: non-Hodgkin lymphoma. The sub-type is diffuse large B-cell – which also happens to be the same aggressive form of the disease for which I was treated in early 2006. The indolent lymphoma I now have is small B-cell.

There’s a world of difference between stomach cancer and a lymphoma that manifests itself in or near the stomach. Subsequent news reports do seem to be getting it right, though.

I wonder if Senator Lautenberg will be receiving R-CHOP chemotherapy, as I did. One of the articles speaks about 6 treatments, 3 weeks apart, which certainly does sound similar.

An article in the Newark Star-Ledger quotes Roger Strair, director of Hematology, Oncology and Internal Medicine at the Cancer Institute of New Jersey, who observes that lymphoma is “an unfortunate consequence of the body's need to make hundreds of millions of immune cells every day.” Sometimes, he explains, those cells are “copied" incorrectly.

“It’s not because of or the fault of what people ate or drank, or the way they live their lives, or electrical lines in the backyard,'' Strair said.

That’s because NHL is largely a genetic disease. Most often it strikes randomly, without regard to family history.

The article includes a general prognosis for all forms of NHL, provided by Dr. Aaron Chevisky, chief of surgical oncology and co-director of the Carol G. Simon Cancer Center at Morristown Memorial Hospital: “The survival rate after one year is 80 percent; after five years, it's 65 percent after five years and 54 percent after 10 years.” That’s pretty good news. With the generally favorable prognosis for B-cell NHL and the wealth of effective treatments out there, I have a good chance of living with the disease a very long time. Which, of course, is better than dying from it.

I feel for Senator Lautenberg and his family, as he continues treatment and – as I presume he will – experiences side effects like hair loss. Right now, I expect he’s in he midst of the whirlwind. The papers do say he plans to continue in the Senate, though – showing up for debates and votes as he is able. That will surely be a tough road for an 86-year old.

With the Demo- crats’ health care bill balanced on a razor- thin majority, Senator Lautenberg’s presence and the Senate floor will be very much needed. I hope he won't have to rush over for any votes during one of the bad weeks out of the 3-week cycle.

Welcome to the club, Mr. Senator: the club no one wants to join, but which a great many of us will join eventually. You’ll find there’s a lot of support and caring among other members of the cancer community.

February 10, 2010 - Bean-Counter 1, Oncologist 0

Snowed-in today – or, to be more accurate at the moment, sleeted in. It’s a “wintry mix” out there – a real mess.

So, I have a little time to do a blog entry.

I just happened upon a link to a blog posting by a pediatric oncologist, David Loeb, who works at Johns Hopkins. It’s called “Why David Hates Health Insurance Companies.” Here’s some of what he writes about one of his patients, a young woman diagnosed with liver sarcoma:

“My patient will need a chemotherapy drug called ifosfamide to treat her tumor. This drug has a significant risk of infertility associated with it. After consultation with a reproductive endocrinologist, we decided that the best way to try to protect her fertility would be to use a drug called Lupron. Unfortunately, Lupron is expensive, so it requires prior authorization from the insurance company. I just received an email from our clinic coordinator that read, in part, ‘It won't be covered if it's for fertility reason (per her case manager).’”

“So... I have some choices to make. Do I lie and say the drug is being prescribed for another indication? Do I tell the truth and risk the family having to pay $750 per dose out of their own pockets? Or do I choose a different drug, one that will not work as well, and know that I am not providing optimal care for this young woman, and am increasing her risk of infertility?”

The rest of the blog entry indicates how hard this doctor has been working, documenting all the complexities of the case, emailing copies of medical-journal articles to insurance-company drones – trying to convince them to make an exception. Bravo to Doctor David for going the extra mile for his patient. I hope he gets someone to listen to him.

Who can put a price on a young woman’s fertility? The very notion of it boggles the mind. Yet, this is the Godlike power our broken health-care system places in the hands of insurance-company functionaries.

Think about it: an insurance-company clerk at a computer terminal vs. an oncology specialist at Johns Hopkins. The clerk is supposedly advised by a consulting physician – who’s on the payroll of the company and who receives bonuses for declining claims – who may not even be an oncologist. And who’s this “case manager,” anyway? My case manager, when I had one, was a nurse. A very capable and helpful person, but certainly not the equal of a Hopkins oncologist when comes to making treatment decisions.

This is the nitty-gritty of our present healthcare mess. This is where it gets up-close and personal. Those rageaholics at Tea Party rallies, ranting on about mythical “socialized medicine,” are perpetuating a system that forces highly-trained specialists to take precious time away from caring for patients to educate insurance-company bean-counters.

It’s not that this is an occasional aberration. This sort of Kafkaesque scene is replayed day in and day out, in hospitals across this land. It’s why our healthcare dollars buy so little patient care.

In a comment on Dr. Loeb's posting, his clinic coordinator chimes in:

"Why do physicians have to charge a high rate for service? They have to pay for me! On a daily basis, I have at least 20 cases on my desk to try and convince an insurance company to approve treatment and/or medications that will improve the patient's quality of life. This is distressing for the unfortunate loved ones who have to deal with the sometimes long wait. As if a child with cancer is not enough to deal with!"

We all know it’s a wasteful, inefficient system. Yet, there are also hidden costs, like this doctor’s and this clinic coordinator's time, that don’t show up on the usual balance sheets.

I wish every obstructionist Senator could read Dr. David’s blog entry.

This is our national shame.

February 4, 2010 - A Double-Dog Dare

Today is World Cancer Day. One of the simple facts about cancer, as we all know, is that early diagnosis is tremendously important. Sometimes it can mean the difference between life and death.

Yet even so, there are many people who have noticed something unusual or out of the ordinary about their bodies, but procrastinate on going to the doctor. Of the lump or mole or recurring pain they say, “I’m sure it’s nothing,” then go back to business as usual – until the next time, when they’re just about as likely to repeat the process.

Although I had none of these symptoms, myself, I did have a recurring sense that something wasn’t quite right, and felt led to ask our family doctor to check me for an aneurysm (something my father had experienced, and nearly died from). It was that ultrasound scan that revealed the presence of the large abdominal mass that was later diagnosed as lymphoma.

An email that arrived today from Lance Armstrong’s Livestrong organization suggested I pass along a little reminder that, if you’re going to get checked for cancer, sooner is surely better than later. Here’s the message:

Know your risks. Call your doctor….What are you waiting for?

Learning about your family history and talking to a doctor about your daily habits can give you valuable insight into the steps you need to take, right now. It’s true – talking to your doctor about cancer can be scary, and many of us just forget to bring it up. But your health is important to me and that’s why I’m asking you to start the conversation now.

All of us can take some simple steps, like this one, to fight cancer. For help in taking that first step, go to livestrong .com and DARE TO CALL YOUR DOCTOR.

Want to nudge your friends to call their doctor? Drop the soda? Stop smoking? You can do it here.

So, I dare you. No – I double-dog dare you.