Wednesday, May 13, 2015

Is it in Rochester, Mayo? Or Boston?

In the post below, I report on a technical study that reviews the clinical efficacy of proton beam machines.  In short, for the most common forms of cancer, there is no appreciable difference in results, but the cost of the proton beam technology greatly exceeds that of technologies generally in use around the world.

The exceptions are some of the more difficult forms of cancer, and who can argue with making this modality available to the few people who can benefit from it?  Such was clearly the case with 12 year old David Gerfast, who received several weeks of treatment for chordoma, a rare type of cancer that occurs in the bones of the skull and spine.  As noted here: "Chordomas are generally slow growing, but are relentless and tend to recur after treatment. Because of their proximity to critical structures such as the spinal cord, brainstem, nerves and arteries, they are difficult to treat and require highly specialized care."

What more moving presentation could be offered by Mayo Clinic than to present David's case as an example of what will be possible in its new $180 million proton beam facility, particularly in association with the grand opening event this past week?

There's only one problem with Mayo's use of David's story.  He was treated at the proton beam facility at Massachusetts General Hospital.  This is not mentioned by Mayo--here's the script from the video--although at one point in the story, there is an onscreen credit associated with some of his images.

And, if you search old stories about the case, you can learn the same thing. Here's one from the local ABC affiliate back in January: "David is preparing to undergo Proton Beam Radiation Therapy in Boston, his father said."

Why does this matter?  The good news is that David was effectively treated, something for which we should all be grateful. And, as I note above, the issue is not the efficacy of proton beams in these types of cases.

The issue is how many $200 million machines do we need in the country.  Yes, it was inconvenient for David and his family to travel to Boston. But look again at this map and note how many proton beam facilities there are and will be within just a few hundred miles of one another in the Midwest--and Texas--and Florida--and the East Coast--and California--and the Southeast:

For the remarkably small number of appropriate cancer cases that would benefit from proton beam therapy, we could spend a tiny portion of the billions being invested in facilities and offer deluxe travel arrangements for all affected families, including support for those left back home.  Instead, we spend the billions, and then hospitals justify the use of the machine on cancers that are not appropriate clinical targets for this form of radiation.  It is hard to imagine a less rational form of health care planning for the country.

Beyond this issue of national policy, I would be remiss if I didn't say something about Mayo's use of a case treated elsewhere as part of its own publicity, with no acknowledgement of that fact.  (Here's the script again.)  I am at a loss to find the right words for this oddly deceptive presentation. What possible purpose was served by the omission?


Ash Paul ‏@pash22 said...

From Twitter:

Incidence of chordoma is 1 in 1 million. So USA with 300 million population would only have 300 cases of chordoma.

RadOnc doc said...

Thanks for sharing---such a total travesty, shame on my specialty.

Anonymous said...

Thanks for bringing this up. The cost of proton therapy and the over building of the these facilities has been debated at length within the radiation oncology community. Medicare reimbursement is 3x the cost of standard IMRT which initially drove the growth a couple of years ago. Now, the majority of private payors are not reimbursing common cancers (ie. prostate cancer) which is what the investors were counting on to drive a return for the huge upfront costs. Proton therapy companies have even gone to extreme lengths as to lobby state legislators (Oklahoma) so that proton therapy is not denied, which is beyond absurd since there is no supporting clinical data beyond rare tumor types, which are already covered. It'll be interesting to see how this plays out, but already majority of centers coming online are extremely nervous they will not cover the upfront costs which is why there are these big advertising/news paper stories touting the benefits. Also, costs for new facilities are being driven down and new companies are advertising single room facilities for 25-30 million.