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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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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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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 Rant

I am involved in a case right now that epitomizes all that is wrong with commercial health insurance.  All in one case.  How convenient.

My patient is a young adult with a sarcoma diagnosed in her liver.  There is one large mass and several smaller ones.  The tumor is not resectable right now, so she will need chemotherapy.

Two issues have arisen this week:  one related to diagnostic imaging (radiology) and the other related to quality of life.  With both issues I have faced significant roadblocks, placed by the patient’s insurance company, that impede my ability to provide the care this young woman needs.

I’ll start with the imaging issue.  The patient’s sarcoma is not one that typically arises in the liver.  Also, the presence of multiple masses is more consistent with spread TO the liver, rather than the tumor arising FROM the liver.  That means, if we hope to cure this young woman, we need to find the primary tumor.  A CT scan of her chest, abdomen, and pelvis showed nothing.  An MRI of her pelvis, to better evaluate her uterus, a place that this tumor could arise, showed nothing.  Because a tumor like she has can come from anywhere in the body, I ordered a PET scan.  The insurance company denied coverage.

Why?

Because, the physician reviewer told me, there is no evidence that a PET scan is useful in this disease.

Of course, the physician reviewer is not an oncologist, and therefore not a sarcoma specialist, so I’m sure he does not keep up with the latest literature about PET scans and sarcomas.  But I do.  A quick search of PubMed using the terms “sarcoma” and “PET” revealed 471 articles.  I faxed him 4 of them yesterday.  I hope that is sufficient evidence to allow me to get the test I, the treating physician, believe my patient needs in order to maximize my chance of curing her.  I’ll find out later today or tomorrow.

The other roadblock involves her quality of life.  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 was 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?

All because her health insurance company wants to save a few bucks.  At least they are “not for profit.”  Imagine the difficulties we face when the insurance company is trying to provide dividends for their investors, instead of health care for their customers.

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One of the cornerstones of medical ethics is the concept of patient autonomy. MedicineNet.com provides a succinct definition: “The right of patients to make decisions about their medical care without their health care provider trying to influence the decision. Patient autonomy does allow for health care providers to educate the patient but does not allow the health care provider to make the decision for the patient.”

At lunch the other day, I was talking about a particularly challenging case when this concept came up. After thinking for a few minutes, I was struck by a sense of irony that I wanted to share in case others have thoughts about this.

The patient is a teenager with leukemia. When she was diagnosed with leukemia, we didn’t really give her parents any choices about treatment. We told them their daughter has leukemia, she needs chemotherapy, and we think she should get this particular regimen. Sure we received informed consent to treat the patient (whether this is truly informed consent is a topic for a future post), but it’s not like we gave the parents a choice of regimens or the option to forego chemotherapy. And because leukemia in children is curable, even if the parents had refused chemotherapy, we would have gone to court to force her to be treated.

Did we respect the patient’s autonomy here? Based on the definition above, I would say we did not. We certainly influenced the decision – by not giving the parents any choices.

Fast forward to last week, when a bone marrow examination revealed residual leukemia. The next course of action at this point is not clear: should she go straight to a bone marrow transplant? If so, should it be a standard transplant, or a more experimental approach? How about more chemotherapy? Is so, which regimen? The right choice is not clear. My “lunch date” is not a physician. So he asked me, “How will the family decide?” Full of respect for the patient’s autonomy, I answered, “Well, I will lay out the options, list some pros and cons, and the family will make a decision.”

This is when Marco asked the question that sparked this posting: “How will they make that decision? They don’t have the expertise to make that call, do they? Isn’t that what you are trained for?”

And that’s when it struck me. This family has had two key decision points: the day the girl was diagnosed, and the day her marrow showed persistent leukemia. At the first point, my expertise was unimportant… any oncologist would have said the same thing (that she needed chemotherapy), and the patient’s autonomy was only a secondary consideration. At the second point, when the optimal choice is NOT clear, when the decision should be MOST informed by someone experienced, that’s when I was explicit about my desire to lay out choices and let the family decide.

I still don’t think I should tell the family what decision to make… I just think it’s ironic that when the decisions are more complex, and my expertise matters more, the patient’s autonomy is even more important.

Maybe that’s how it should be. What do you think?

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Leber’s Hereditary Optic Neuropathy
Leigh Syndrome
Myoneurogenic Gastrointestinal Encephalopathy

What do these disorders have in common? They are all mitochondrial diseases.

What is a mitochondrial disease? Mitochondria are the parts of a cell that are responsible for generating energy. Mitochondria contain DNA, just like the nucleus does. Mutations in mitochondrial DNA can cause them not to function correctly, and some of these mutations cause the diseases listed above (and others).

When a baby is conceived, we think of the baby’s DNA as coming half from the mother and half from the father. That is true for the DNA in the nucleus, but not true for mitochondrial DNA. All mitochondrial DNA is inherited from your mother.

As a side note, the fact that all mitochondrial DNA is inherited from the mother is the basis for anthropological studies that allow scientists to trace the origins of humanity back to “Mitochondrial Eve” in Africa.

Since all mitochondrial DNA is inherited from the mother, replacing mitochondrial DNA that carries a disease-causing mutation with mitochondrial DNA from another source would prevent a woman from passing on such a disease to her children.

That is the basis for the work by Shoukhrat Mitalipov’s group at the Oregon Health and Science University published online in Nature on August 26. This group took an egg from a female monkey and removed the nucleus, replacing it with the nucleus from a different female. This hybrid egg, with nuclear DNA from one female and mitochondrial DNA from another female, was fertilized, and the resulting embryo was allowed to develop. Not every embryo developed normally, but some developed into seemingly normal monkeys like the ones shown above.

This approach would allow a couple with a family history of mitochondrial disease on the mother’s side to have children with mitochondria donated by an unrelated woman, and they could have children with no risk of developing the disease.

The monkeys described in the paper have genetic contributions from 3 adults. Does that mean there are three parents? I guess that depends on how you define “parent.” If you are a parent simply by virtue of having contributed DNA to a child, then yes, these monkeys have 3 parents. Of course, if a parent is defined as the adults who raise you, then a child conceived in this way would have 2 parents. The ones who raise the child.

Experiments like these raise huge ethical issues. Therapeutic cloning like this introduces changes directly into the germline (the DNA that is passed from parent to offspring), something that has long been taboo in the mainstream scientific community. It also raises interesting custody issues (does the donor of the mitochondrial DNA have any parental rights?). I’d be interested to hear what people think about this.

Like it or not, we are on the verge of a new era of genetic medicine. Some aspects of genetic medicine will not be controversial (tailoring medical treatments based on the presence of specific mutations), but other aspects are sure to raise questions (like the experiments described in this paper). It is critical that we begin to have serious, society-wide discussions about these issues, before it is too late and the discussions become arguments.

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In the past, I have blogged about patients of mine who have made the news. This past week, while I was reading the newspaper before going to work, my eye was caught by an article in the Sports section about a man with a familiar name.

(Note: All personal information in this post is also seen in the article in the Washington Post, so there is no violation of confidentiality. Also, some links will require a subscription to washingtonpost.com to see.)

The article was about the head football coach at the University of Richmond, Michael London. The article spoke about Mr. London in glowing terms, talking about how he grew up in Richmond, played defensive back for the University of Richmond, and eventually became a detective in the Richmond Police Department’s street crimes unit.

See the video here.

Eventually Mr. London left the police department and became a football coach. I met Michael London when he was the linebackers coach for the University of Virginia’s football team. At this point his daughter had been diagnosed with Fanconi Anemia and needed a bone marrow transplant. The London family investigated several cancer centers, and settled on Johns Hopkins.

The Washington Post article related the story of Ticynn’s transplant, and how Mike felt about being the donor. Reading about a transplant I had directed, but from the father’s perspective, was very moving. We doctors rarely truly know how our patients perceive what they are going through. We usually only know what they tell us. This time, I got to read how a patient’s family dealt with a transplant without the filter that accompanies talking with a doctor.

I remember Mike, and I remember Ticynn. It was an honor to take care of the London family, and I’m thrilled Ticynn did so well (and continues to do well). Reading an article like this, and seeing how our medical encounter fits into the arc of Mike London’s life was a fabulous experience. I only wish I could see all of my patients’ lives in this way.

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The best part is what Phil did with this experience. He didn’t just tell his treating team. He didn’t just tell his friends. He wrote a case report describing the experience, and with the help of his radiation oncologist, he published it. In a journal called “The Oncologist.”

You can read the paper here, but only if you have a subscription (or are accessing the internet from an institution with one).

Most doctors say that we learn from our patients. But how many have read articles in the medical literature authored by our patients?

Way to go, Phil!

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What a horrid, 50′s-era cliche!

But today, it was true. This afternoon I played golf in a fundraising tournament for the Heather Brooke Foundation. This is a foundation named in honor of a patient with Ewing’s Sarcoma that I once helped care for. When Heather passed away, her mother channeled her grief into helping others. The Heather Brooke Foundation exists to help conquer childhood cancer and to help and educate the families of children with debilitating illnesses.

Today was a beautiful day for golf… if you like playing in gale force winds! Of course, if you’re as terrible as I am (other than Putt Putt, today is the 3rd time I’ve played golf in my entire life), the wind really doesn’t matter so much.

But for my buddy Dean, who really plays quite well, the wind was a problem.

We played at The Timbers at Troy, a beautiful local course. It was a fabulous day, and everyone seemed to have a great time.

Last year’s tournament raised enough money to buy a PCR machine for my lab. With the help of this machine, we generated the preliminary data that convinced the National Comprehensive Cancer Network to fund our clinical trial for patients with recurrent and refractory sarcomas. You should have heard the applause when I made that announcement at the post-tournament lunch!

Yes, it was a beautiful golfing day.

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