Fishing, and the Kindness of Strangers

The ability of the internet to catalyze spontaneous events is not limited to Rickrolling or snowball fights. I want to tell a story of the power of the internet, and how it can harness all that is good in people, allowing total strangers to reach out to someone in need and do something special.


One of my patients is a 19 year old young man whose cancer has proved resistant to most every treatment he has tried. Last year, when he was in remission and feeling well, Make-a-Wish granted his wish to go deep sea fishing with his family. T had a great time, and his only regret was that he did not hook a fish large enough to need to be “strapped in.”

Last month T and his mother met with our team (me, the fellow, the nurse, and the social worker) to discuss participating in a clinical trial. The discussion was very frank, and it is clear T knows we no longer believe we can cure him. He told us he just wants to live long enough to go fishing one last time. Specifically, he wants to fish for tuna, and to hook one large enough that he needs to be strapped in to reel in the fish.

I don’t know anyone with a fishing boat. But I do have accounts on Facebook and Twitter. So I used Facebook to put out the word that I needed help finding a charter fishing boat for my patient to fish for tuna. One thing led to another, and within a few days I had the phone number of a fishing boat captain in North Carolina. This man hasn’t met me and hasn’t met T. Nevertheless, he offered the use of his boat for T and his family to go fishing, donating his time and offering to pay his first mate’s fee as well. All he asked was for some help with the cost of fuel. Enter Kind Stranger #2. This other man, someone neither T nor I has ever met, gathered together some friends and raised enough money to cover the cost of the fuel for a day’s fishing trip.

So, with the help of 21st century technology, we were able to arrange for T to go fishing for tuna off the coast of North Carolina, at no cost other than the gasoline to drive down there. Thank you, Captain S and Mr. K. The world would be a better place with more people like you in it.

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A Long Year for Mike

A year ago this week, Mike's sinuses were acting up again.  It wasn't uncommon for Mike to have sinus problems during winter, but last December things were worse than usual.  A trip to his pediatrician led to a CT scan.  The scan found a mass, not a sinus infection, and that's how Mike and I met.

Mike spent last Christmas worrying about the mass in his sinuses, and whether it was cancer.  After a year of surgery, chemotherapy, and radiation, Mike celebrated a very important day earlier this month:  End of Chemo Day.

We celebrated with Mike in clinic.  His family brought trays of sandwiches and desserts to share with the staff.  Mike plays guitar, so he had a special cake.

The food was awesome, the cake was divine.

But the best part of the day?  The smiles associated with the news that the MRI and the PET scan couldn't find any cancer in Mike anymore!

I'm pretty sure this year Christmas will be a whole lot more merry in Mike's house!

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Not Medically Necessary

After a courageous 5-year battle, R lost his fight with cancer. He lived a good life while he was being treated, finishing high school, starting college, and checking items off his bucket list. This holiday season is hard for his family. His absence is palpable … and painful. What could make this time any worse?


The letter they got from their insurance company.

Apparently I ordered a CT scan back in September. The insurance company sent the family a letter telling them that they have deemed the scan “not medically necessary,” and they are refusing to cover it.

I’m used to the things health insurance companies do to try to avoid “medical losses” (their term for payments made to health care providers). I often have to fight with them when they don’t want to cover treatment that is part of a clinical trial (even when the trial is standard of care), or when they don’t approve of my choice of antibiotic, or don’t want to pay for a bone marrow transplant. Those denials, however, are usually couched in terms like “this is not a covered benefit.” This allows the company to claim that they are not making medical decisions : they are making a determination of what is covered – it is up to the physician and patient to decide what treatment is necessary, they are only deciding whether they will pay for it based on the terms of the policy.

This letter is different. It is denying coverage because someone decided the scan was “not medically necessary.” That person has made a medical decision.

Who is the person that made this decision? There is no way for me to find out, but it is likely that the person making that decision is not a pediatric oncologist with experience taking care of kids with multiply relapsed, refractory osteosarcoma. The person who made this determination may not be a physician at all. I am certain of one thing, however. This person was not in the room examining my patient when I decided he needed a CT scan. This person was not responsible for the health of my patient. This person was not trying to decide if a treatment was working, and if not, what we should do next. This person was not helping to treat my patient in any way.

What kind of penalty would I face if I were making medical decisions for patients who I did not see, talk to, or examine … whose cases I was not familiar with? Apparently, there is no penalty for someone making medical decisions from the comfort of their corporate office building, looking at nothing more than the interval of time between two scans.

Yes, I will appeal the denial. Hopefully the insurance company will agree to cover the bill. But only Ebeneezer Scrooge would think it reasonable, during the holiday season, to mail such a letter to the parents of a child who just passed away. Only the Grinch, whose heart was two sizes too small, would think it reasonable for someone in an office building to look over my shoulder and decide that a CT scan I ordered to evaluate the progress of my dying patient’s cancer was “not medically necessary.”

 
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More What You'd Call "Guidelines" than Actual Rules

Of course, Captain Barbossa was referring to The Pirate Code, but he could just as easily have been referring to documents released last month by the US Preventive Services Task Force or the American Congress of Obstetricians and Gynecologists (ACOG).

In an unanticipated coincidence, these two groups, operating independently, reached similar conclusions about commonly utilized screening tests: mammograms and Pap smears. Both groups reviewed the data and concluded that routine use of these screening tests, as currently recommended, may not be warranted.

Much newsprint has been expended since then discussing the political implications of these new recommendations. As this is not a political blog, I will leave that discussion to others.

What I want to talk about is how guidelines (should) influence patient care.


I think a lot of the worry surrounding these guidelines stems from concerns that they will be interpreted by those who pay the bills in our system (meaning the Federal Government, through Medicare reimbursement regulations, and the private insurance industry) as “Actual Rules” rather than “Guidelines,” meaning that if you get a mammogram or a Pap smear but don’t meet the “Guidelines” your service won’t be covered. In the current environment, this may be true, but it shouldn’t be.

The key to my argument is the highlighted words above: “routine use” and “as currently recommended.”

The key to understanding why both groups reviewed the published data and reached similar conclusions is an understanding of the nature of screening tests as well as a bit on biostatistics. My work colleagues who read this will laugh at the idea that I am trying to teach anyone statistics, but that’s what I’m going to do.

To start, the accuracy and usefulness of any medical test can be described by the terms “sensitivity” and “specificity.” Sensitivity refers to how likely the test is to be positive if the condition is present. So a sensitive test will pick up every case. Specificity is the mirror image – if the test is positive, how likely is it that the condition is present. Screening tests are designed to be very sensitive, even if they are not very specific – that way, no cases are missed (very sensitive), but sometimes the test is positive even if the patient does not have the disease (not very specific).

The other statistical consideration is the concept of positive- and negative-predictive value. This means, how likely is a positive test to mean the disease is there, or how likely is a negative test to mean the disease is absent? Two concepts factor into the positive- and negative-predictive values of a test: the sensitivity and specificity AND how common the condition is in the population being tested.

These considerations underlie the new recommendations. Mammograms save lives. No one disputes that. Early detection of breast cancer saves lives. No one disputes that. But mammograms are not very specific, and the positive-predictive value of a positive mammogram is MUCH more if the woman is at risk of developing breast cancer than if the woman is at relatively low risk. Since a woman with a strong family history of breast or ovarian cancer is at higher risk of developing breast cancer in her 40’s than a woman with no such history. Thus, the positive-predictive value of a mammogram in a 40 year old woman is higher if the woman is at higher risk. This is why the Task Force no longer recommended ROUTINE mammograms for women under 50.


This is where the practice of medicine comes in. As the doctor treating a 40 year old woman, it is important to remember that a mammogram will be valuable if the woman is at risk, but far less valuable if the woman is NOT at high risk. So blindly refusing to order a mammogram simply because the patient is 40 makes no sense (and an insurance company refusing to pay for it based solely on age makes equally little sense). A 40 year old woman whose mother had breast cancer should have a mammogram and it should be covered. A 40 year old woman with no relatives who have ever had cancer may not need a mammogram. Determining whether a screening test is needed is a decision for the doctor and the patient to make together.

This isn’t rationing care, this is good medicine.


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A Smarter War on Cancer

The headline in the Washington Post caught my eye: “Fighting a smarter war on cancer,” [sorry, you must register to read the article] an opinion piece by Dr. John Marshall, a faculty member at the Lombardi Cancer Center in Georgetown. It is about the intersection between health care reform and cancer care - it seemed like just the thing to read while drinking my morning coffee. But halfway through the article I found myself feeling marginalized, and that got me thinking. Although Dr. Marshall makes some good points, I think he missed a golden opportunity to propose changes that could make a real difference in our lifetimes.


How did Dr. Marshall make me feel marginalized? He wrote the following about chemotherapy:

“The most common approach to treatment involves exposing large populations of patients to highly toxic poisons in the hopes that the treatment will kill the cancer cells and not the patient. This strategy has succeeded with several types of less-common cancers, curing some patients with leukemia, lymphoma, testicular cancer and most childhood cancers [emphasis is mine]. But it has not worked for more common forms of the disease, including breast, prostate, lung, colon, pancreas, stomach and ovarian cancers. These cancers represent an enormous public health problem, consuming the majority of our cancer-specific health-care costs and research dollars.”

I realize that childhood cancer is rare, and that to make an impact on the total health care system in our country will require real progress against such public health menaces as breast and lung cancer. However, I believe that rather than brushing aside the approach that transformed childhood cancer from a death sentence to a treatable disease, the medical oncology world needs to embrace it.

Most oncologists know this, but in a single generation, collaborative clinical research in pediatric oncology, exemplified now by the Children’s Oncology Group, has revolutionized the way childhood cancer is treated in this country. Once uniformly fatal, there are now some types of childhood cancer that are cured 95% of the time. This transformation did not come about by chance. It came about because of a culture change that is now a huge gulf between pediatric oncology and medical oncology: the role of the clinical trial.

Dr. Marshall hints at this in his article: “In cancer medicine, fewer than 5 percent of all patients in the United States enter clinical trials. That means more than 95 percent are treated with the ‘standard of care’ -- a legal term denoting a minimum level of care for an ill or injured person.” In contrast, being entered on a clinical trial IS the standard of care in pediatric oncology. Partly this is born out of necessity – childhood cancer is rare enough that unless nearly every child with cancer is treated on a trial, not enough patients can be studied to yield reliable results, making progress impossible.

The cultural difference in the view of clinical trials between medical and pediatric oncology is readily apparent in my every day practice, particularly when I have to approach an insurance company about enrolling a patient of mine on a trial. In the “adult” world, a clinical trial is something offered when there is nothing “standard” to offer, just as Dr. Marshall implies. What this means is that insurance companies often feel justified in denying coverage for trials, since these are “experimental therapies” and “not standard.” In the “pediatric” world, everyone goes on a clinical trial. Coverage is routine, because the trial IS the standard.

Dr. Marshall makes an excellent point about where the future of cancer therapy lies. He believes, as do I, that the future is in “personalized medicine,” meaning treatments that are individualized for each patient, based on the molecular and cellular composition of their individual cancer. Unfortunately, therein lies the problem. In the world of “personalized medicine,” there will be no standard. What works for Patient A will not necessarily help Patient B. Destruction of the concept of “standard of care” in oncology will make coverage decisions by insurance companies far more complex. This will need to be accounted for as we move towards a reformed health insurance system.

More importantly, demonstrating the value of “personalized medicine” will require more clinical trials. Only by enrolling patients in such trials, painstakingly dissecting the molecular changes in each patient’s tumor, and carefully proving that tailoring therapy based on these changes dramatically improves outcomes can real progress be made. Because these molecular changes will, by definition, vary widely from patient to patient, treating only 5% of adults with cancer on clinical trials will never get us to where we need to be. The medical oncology world needs to learn from the successes of pediatric oncology. Being treated on a clinical trial needs to be the standard, not something that is reserved for use when “standard of care” fails.

Instead of marginalizing pediatric oncology, hold our system up as the model. Only then will real progress be made in the war on cancer.

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When Bad Things Happen to Famous People

In a press release issued earlier this week, former NBA star and actor Kareem Abdul-Jabbar announced that he has been diagnosed with leukemia. Specifically, he has chronic myeloid leukemia (CML). Abdul-Jabbar went on to say that his disease can be managed by taking daily oral medication and he expects to live a long healthy life.

With leukemia? How is that possible?

Abdul-Jabbar has benefited from one of the first and most exciting applications of the translational research I have blogged about in the past.

Before 2000, CML was treated with a combination of a chemotherapy drug called cytarabine and another drug called alpha-interferon. Patients treated with this combination usually responded well, but none were cured. The only curative treatment was a bone marrow transplant, and in adults, bone marrow transplantation carries a significant risk of death.

So how will Kareem Abdul-Jabbar lead a long healthy life by just taking a daily oral medication?

The answer lies in the molecular biology of CML. It shows how basic research, undertaken for no reason other than to understand the biology of cancer, can lead to unexpected therapeutic breakthroughs. Such research can transform a disease like CML from one that kills without a bone marrow transplant into one that is managed just like high blood pressure.

Here’s how it happened:

Working in Chicago in the 1970’s, Janet Rowley discovered that the “Philadelphia Chromosome,” an abnormal chromosome seen only in the leukemia cells of patients with CML, is actually composed of pieces of two different chromosomes. Her idea, that so-called chromosome translocations could result in the creation of new genes that can cause disease, was heretical at the time, but is now a part of the standard dogma of oncology. She was rewarded with a Lasker Award (often called the “American Nobel”) in 1998.

Subsequent research demonstrated that the Philadelphia Chromosome instructs the leukemia cells to make a new enzyme (called a tyrosine kinase) that causes the leukemia.

Researchers led by Brian Druker eventually developed a drug that blocks the activity of the tyrosine kinase that results from the Philadelphia chromosome. This drug, called imatinib (the trade name is Gleevec), is a pill that, taken daily, kills CML leukemia cells. This work was also rewarded with a Lasker Award in 2009.

The net result of the work of Dr. Janet Rowley, Dr. Brian Druker, and a host of others is that CML has been transformed from a disease curable only by bone marrow transplantation, into a disease that can be managed as a chronic condition, by taking pills every day. An incredible change over a short period of time!

This is the model of basic and translational research those of us in the field emulate, and the prime example of targeted therapy for cancer.

Work that started out as very basic science, motivated only by a desire to understand biology, has led to a transformative new medicine, and now Kareem Abdul-Jabbar (and many people far less famous than him) should be able to lead a healthy, active life taking daily oral medication, despite having leukemia.

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As Breast Cancer Awareness Month Draws to a Close

As breast cancer awareness month draws to a close, I wanted to highlight a few breast cancer posts from other medical bloggers:

Suture For a Living asks: "Is Breast Cancer Over-Diagnosed?"

Bayblab writes about research on a diabetes medication killing breast cancer stem cells.

Science Update Blog discusses claims that we are "Two years from breast cancer cure".

Highlight Health's Allison Bland says "The Review is in: Lifestyle Changes Prevent Breast Cancer
and Healthcare Hacks discuss the benefits of weightlifting in breast cancer survivors.

If you've found any interesting breast cancer blogs or posts, link to them in the comments!

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The Sarcoma Program Goes 21st Century

Modern technology impacts everything we do. The very fact that you are reading these words attests to how technology touches your life.

Well, the Johns Hopkins Sarcoma Center has engaged Web 2.0, too. If you follow this link, you will hear a podcast featuring my partner, Dr. Kristy Weber, the chief of orthopedic oncology at Johns Hopkins.

Bruce Shriver, one of the founders of the Liddy Shriver Sarcoma Initiative, asked me about chemotherapy for high grade sarcomas, and you can see that video here. An article in their online newsletter, ESUN, discussing my laboratory's research, is here.

Over time our group will be producing more podcasts. I will post links to them as they appear.

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I went in to say "Good bye"

We knew this day was coming. Over the summer her cancer came back even though she was getting chemotherapy. We switched gears, giving radiation and chemotherapy aimed at controlling pain, no longer at curing disease. But that doesn’t make this day any easier.

Overnight, last night, it became harder to breathe and her pain worsened. A chest x-ray showed almost no air getting to her left lung. Hoping there was fluid that could be removed, she had a CT scan today; but there was no fluid, only tumor. Tumor that hadn’t been there 10 days ago.

I went in to the hospital today, to see her one last time before she went home. We watched some of the football game together. We talked about her kindergarten teacher, a brave woman who was a tremendous support before she died of breast cancer in August. She told me about the tombstone she wants – a softball diamond with a girl sliding into home plate, with a caption that reads, “Safe at home!”

But rather than complaining, or asking “why me?” the young woman and her family had different plans to discuss. Their community had raised a large sum of money to help cover medical expenses, and there is going to be a lot left over. As her father said, “The community has done a lot for us. We need to give something back.” So, on the day she was going home, my patient was deciding how she was going to help her community.

They decided to give some money to a fund established in memory of her kindergarten teacher. They decided to give some money to a neighbor who, because of sudden illness, had fallen months behind on his mortgage payments. And they talked about how they could still contribute to Ewing sarcoma research. “Just because this is happening to me, doesn’t mean I don’t want to keep trying to help,” she said.

Photo Credit
I hope that when I am in her situation, I can show half as much grace as she did this afternoon.

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