Family’s pursuit of proton beam therapy is focus of international controversy

Proton beam therapy – which I’ve written about many times – is in the headlines for new reasons, including:

• a little boy with brain cancer
• charges of denial of treatment
• “an international manhunt”
• extradition hearing
• a statement by the British Prime Minister

A Google search comes up with more than 2,000 returns on the story.  But I haven’t seen a single one get at some of the issues I raise at the end of this post.

The little boy is 5-year old Ashya King.  He has a brain cancer called medulloblastoma.

The New York Times reports:

After being told that Ashya would not benefit from proton beam radiation therapy — a cancer treatment not available to brain tumor patients in Britain but sometimes paid for by the National Health Service abroad — the Kings took their son out of the hospital against doctors’ orders on Thursday. They left the country later that day, taking Ashya and his six siblings along.

A European arrest warrant was then issued by the British police, on the grounds of parental neglect. Ashya relies on the attention of medical specialists and there was concern that his removal from the hospital could put his health or even his life at risk. The family was arrested near Málaga on Saturday. Before the arrest, in a YouTube video of himself and Ashya, Mr. King denounced the police hunt as “ridiculous.”

He said the family believed that proton beam treatment, despite what British doctors had told him, was the best available treatment for his son’s condition, a cancer known as medulloblastoma. They went to Spain, Mr. King said, to sell an apartment they owned there in order to raise money for the treatment in the Czech Republic.

The Telegraph posted an ITV Daybreak video with the mother of another British boy who traveled to the US to be treated with proton beam, and who claimed it saved her son.

The Behind the Headlines project in the UK reported:

The (British National Health Service) sends patients abroad if their care team thinks they are ideally suited to receive proton beam therapy. Around 400 patients have been sent abroad since 2008 – most of these patients were children. …

Some overseas clinics providing proton beam therapy heavily market their services to parents who are understandably desperate to get treatment for their children. Proton beam therapy can be very costly and it is not clear whether all children treated privately abroad are treated appropriately.

It is important not to lose sight of the fact that conventional radiotherapy is, in most cases, both safe and effective with a low risk of complications. While side effects of radiotherapy are common they normally pass once the course of treatment has finished.

In all of this, there is a golden opportunity to improve the public dialogue about new medical technology. Issues such as: how many such devices does one city, one region, one country, the world need?

Two years ago,  I pointed to another story about another British youth who came to the US for proton beam therapy. The journalist raised important policy questions:

“But while the British boy is getting cutting-edge cancer treatment here, others who live in America are struggling to obtain the medical care they need. And when they are seriously ill or have a long-term condition, many will not be able to pay the bills that pile through the door. Two-thirds of personal bankruptcies in the US are related to healthcare costs.”

Why does the US (with more than a dozen operating and more than a dozen in the works) have so many proton beam facilities?  Much of the proliferation – not all of it – is for reasons other than treating kids with difficult-to-treat brain cancer, where the evidence is strongest but where the number of cases is relatively small.  It’s to treat the prostate cancer cash cow, for a condition where the evidence is questionable.

That’s a part of the technology assessment, technology proliferation story that isn’t often told.  Some background:

• An American Cancer Society official’s blog post, “Is proton beam therapy for prostate cancer worth the cost?” Excerpt: “With this limited availability and no evidence that proton therapy is better, why is use of the procedure rising at such a feverish pace? Financial incentives may be playing a role. …men who are choosing treatment today should be aware that proton therapy’s hoped-for benefits have not yet been proven.  Meanwhile these men (as well as Medicare and other insurers) should reasonably ask, “Does it make sense to get the same results yet pay twice as much?”

• A Columbus Dispatch story about an Ohio man having to go to Florida for proton beam therapy for prostate cancer. But the story seemed to promote the plans for two proton beam facilities of their own in the near future right there in central Ohio so no one would have to travel to Florida anymore. No hard questions about whether two are needed, or about the evidence for use in prostate cancer.

• 3 proton beam facilities being built within 40 miles of each other – two of them just three miles apart – in the Washington-Baltimore area.

• Two proton centers for Dayton, Ohio plus another in Cleveland.  Meantime, the Cleveland Clinic states: “we have chosen not to offer proton beam therapy. There is no long-term data to show that this option is any better than standard radiation therapy (for prostate cancer). Recently published research also suggests that complication rates with proton beam therapy are actually higher, not lower, than with standard radiation therapy.* At this time, we want to offer our patients only those therapies that have proven to be effective and have the fewest side effects.”

• Two proton centers in the Chicago area
• Two Mayo Clinic proton centers
• Two Oklahoma City proton centers

(Note that it’s becoming more rare to see a single proton center in a given area.  They multiple like rabbits – competing rabbits – going after the same carrots.)

• An article in the Journal of the National Cancer Institute, “The Proton Beam Debate: Are Facilities Outstripping the Evidence?“

So while the Ashya King story has many ugly angles, let’s not turn it into a story of the big, bad British health care system that doesn’t have any proton beam facilities up and operating for kids like this yet.  That angle – about allocation of limited resources – is a lot more complex.

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