This release focuses on one patient’s experiences with proton beam therapy to treat a form of cancer called sacral chordoma. The release is effectively an account of the patient’s diagnosis and his experiences receiving the therapy — but provides little information about potential side effects, cost, or even how well the treatment worked.
We’ve published dozens of blog posts and systematic reviews on proton beam therapy; many of which focus on media messages from a single hospital that has invested in the very expensive technology.
Using an individual patient to shed light on a form of cancer treatment is not uncommon; focusing on the individual gives readers someone to relate to. However, it is important for news releases or news stories to go beyond individual anecdotes and provide readers with information they can use to make informed decisions about their own treatment options. How expensive is this form of treatment? What are the potential side effects? How effective is it? This release provides no information that readers could apply to their own circumstances. The question in this instance is: why did the care provider deem this to be worthy of a news release?
It’s important to keep in mind that the release highlights proton therapy without offering any comparison with any other therapies.
Cost is not mentioned. A visit to the website of the organization that issued the release offered little additional information about cost, noting only that “many insurance plans will cover” proton beam therapy. And many will not. Finding cost information online was surprisingly difficult. According to a 2017 story on MedPage Today, the cost of proton beam therapy can range from $30,000 to $120,000. Those are significant numbers, and the failure to address cost in the release is a significant oversight.
Since these multi-million dollar machines (which can cost in excess of $200 million) are available in a very limited number of locations, many patients, including the one profiled in the release, have to travel for proton therapy treatment so prospective patients would need to add travel expenses to overall treatments costs.
Not only does the release neglect to offer quantified benefits for context on the effectiveness of proton therapy in treating sacral chordoma in general, it doesn’t even articulate how effective the treatment was in treating the sole patient discussed throughout the release. Nor are we told how the patient’s response to the treatment was measured.
The release tells readers that proton beam treatment poses fewer risks than other forms of radiation therapy, but doesn’t explain what those risks are — or what risks proton treatment does pose. As the Mayo Clinic notes on its site, “Proton therapy can cause side effects as the cancer cells die or when the energy from the proton beam damages healthy tissue.” Common side effects range from headaches and fatigue to soreness and digestive problems.
Side effects from proton beam are likely the same as photon beam radiation but the selling point of proton is that it is more precise and thus the overlapping side effects should be fewer. But there have been few, if any, trials to compare proton and photon therapies which would supply the needed evidence to support the claim.
The release refers to “a published research paper,” but offers few additional details. When was the study done? How many patients were involved? What were the quantified benefits? Risks? We were able to find the relevant paper (which was a retrospective analysis of 40 patients), but many readers may not have the wherewithal to track it down (or have access to the journal where it was published). A news release needs to provide at least some basic information for readers.
No disease mongering here. The release provides useful background on the prevalence of sacral chordoma.
It’s clear the release is from a proton beam therapy provider discussing one patient’s experience with undergoing the therapy. The release is clearly marked as coming from the treatment provider, so the conflict of interest is pretty straightforward. And the lack of new findings being prevented means that there is no funding source to discuss. As such, this earns a satisfactory ranking.
The release discusses, in brief terms, the risks and challenges associated with surgical treatment options and with other forms of radiation therapy but it makes no effort to compare treatment outcomes. The release could have been much more clear that treatment options are surgery vs. “traditional radiation” vs. proton beam radiation.
The release makes clear that there are 28 proton therapy centers in the U.S. and that the center at issue here is the only one located in Michigan.
The release doesn’t make any claims about research, or purport to present new findings. As we noted at the very top, it is not clear why this news release was issued. What, if anything, was new or interesting about this particular case?
Proton therapy often gets marketed as newer “precision” therapy that has fewer side effects than traditional radiation. But with few if any clinical trials comparing outcomes, these claims generally don’t hold water.
The release doesn’t employ sensational language. It makes no particular claims about the effectiveness of the relevant treatment option but notes only that it poses fewer risks than other radiation treatment options.