Austin Frakt links to an interesting study on the comparative effectiveness of proton beam therapy (PBT) for a variety of cancers:
ICER’s review found that PBT was superior to surgical treatment of tumors of the eye, and appears to be a safer alternative to conventional radiation in brain and spinal tumors as well as pediatric cancers, although most of the evidence in the latter two conditions has been based on simulation modeling rather than actual clinical study. There was insufficient evidence to determine whether PBT offers any improvement over alternative treatments for many other conditions, including bone, breast, gastrointestinal, head and neck cancers, lymphomas, and benign arteriovenous malformations. For many other conditions, including prostate, liver and lung cancer, PBT provides comparable outcomes but at greatly increased cost. Payments for PBT are typically 2-3 times higher than for other forms of radiation treatment and may approach $50,000 per course of treatment in some situations.
There are three categories of outcomes in that paragraph. Better results than current best practice, about the same results as best practice alternatives at signficiantly higher costs, and potentially worse than alternative results. How does our health system(s) deal with this information and how should our health system deal with this information.
First, let’s deal with the should instead of is. As a value and moral judgement that informs the technocratic equation, I think the idea should be we do and pay for things that work well. And if there is equal effectiveness between various alternatives, the least expensive alternative should be tried first. We should not, as a society, pay for less effective and more expensive treatments while allowing individuals to pay for those courses of treatment themselves. These are moral statements in the garb of technocratic language.
How does these values get expressed in insurance industry plumbing?
There are a couple of ways. For cancers of the eye, as well as brain/spinal cancers, PBT would be quickly and routinely approved as it is better/safer than the alternatives even if it more expensive.
For the cancers where effectiveness is roughly equal but the costs are significantly higher, there are a couple of ways to deal with this scenario. The first is to engage in bundle payments for those particular diagnosises where the average bundle is pegged to the cost of the just as effective but significantly less expensive treatment modality. Clinicians could appeal for PBT bundle uppers if there were unique markers/indicators that lead to a statistical argument that PBT would be the superior course of action, but the default standard of care would be the previous less whizbangy treatment. An alternative modification would be a reference priced bundle where the reference price for the bundle would be the current standard of care plus a little bit while allowing the individual to buy up to PBT if they wanted to.
And for the cancers such as bone and breast where PBT is both more expensive and less effective than the current standard of care, PBT should either be denied as a paid for service pending appeal or the individual can have the choice of either the standard of care at full coverage or paying for the entire expense of PBT. The goal here is to move doctors to a closer to uniform standard of care and treatment modalities while making medicine closer to science than a craft.
How is Proton Beam Therapy treated today?
Medicare Fee For Service is currently forbidden from taking cost into consideration when it receives a claim. As long as a billing code is valid and not deemed experimental and the bill comes from an authorized Medicare provider, Medicare pays. Medicare pays even if there are superior modalities availabile in terms of both outcomes and costs. Medicare will pay its full rate for PBT for breast cancer, it will pay a full rate for PBT to treat prostate cancer, and it will pay full rate for PBT treatments for brain cancer. Only the last offers high value for the money spent. Slowly Medicare is changing as it is experimenting with bundled payments, but those bundles are not cancer related yet.
CHIP and Medicaid payment policies vary by state. Some states’ CHIP programs will not cover PBT in any circumstance. Others will pay for PBT depending on diagnosis and clinical indicators. The same variance applies to Medicaid policies. Managed care states will see PBT vary by managed care organization.
Large commercial insurers will have a variety of responses. Some insurers currently will pay full rates for any prescription by an in-network provider. Others will selectively deny PBT therapy based on effectiveness. For instance, Blue Shield of California won’t pay for PBT for early stage prostate cancer. Even within the same insurance company, policies may vary. An individual covered by a PPO offered by a company may have easier access to PBT for non-cost effective treatments than an individual in that company’s aggressively medically managed HMO. In the HMO, authorization is most likely required for PBT, and it is likely to be denied if the PBT is prescribed as for cancers where there are better and cheaper alternatives. The same situation will apply to on-Exchange policies. The PPOs are more likely to pay than HMOs.
There is some, haphazard cost effectiveness decision making at current. It is not transparent, and it is not easily navigable. Medicare is in the process of reducing their reimbursement rate for PBT so that its costs will equalize with other alternatives that produce similar results. But it is confusing and allowing people to receive less than optimal treamtent at high costs in service of the value of “consumer choice” and “freedom” with the side effect that there are few systemic paths of no that could drive prices down.
aimai
Thank you for this. Very informative. My aunt was just diagnosed–or they just told us–that she is being treated for a recurrence (?) of ovarian cancer. She is an elderly mathematician who has specialized in cancer statistics for her entire career. I think the worked for the NIH as an epidemiologist/statisician before she retired. I know she and my uncle, who is also a mathematician, are exploring every avenue and modality but it shouldn’t take two Ph.D.s and all your free time to figure out what to do.
aimai
Which leads me to another question raised by my brother–who also reads here–which is how do insurance companies (and Medicare) come to “know” about the effectiveness of a given cancer treatment in the absence of large scale trials? How do they deal with issues like repeated rounds of treatments or medical judgment as to effectiveness? Isn’t the move towards personalized, genetic test based, treatments? Isn’t the current understanding that some things will work for one kind/genetic patient and not for others but that we don’t yet have the scientific knowledge necessary to discriminate effectively? Especially with cancers where a tumor focused treatment (removal, shrinkage) isn’t the whole story?
Lee
Does the impact to the patient factor into costs at all?
For instance treatment Z is much more expensive has a similar efficacy rate but is significantly easier on the patient.
I think you could justify the additional cost with the reduction in secondary problems.
thanks!
WereBear
Sadly, though, it often does.
Several years back, I had a cancer scare, and had actually (numbly) signed the paper for the supposedly safest, though somewhat drastic, course the surgeon recommended. But in the few days I had before surgery I spent every free moment researching, and showed up the day before to take that consent back. Frozen sections were not reliable enough for this kind of decision, there were deleterious consequences to going ahead and doing the drastic course that had not been discussed with me, and I wanted the least option. Which is what I got, and I’m fine.
But to be fair, there was a risk and I took it. Also, I’ve discussed this with excellent physicians, who tell tales of a detailed laying out of the different courses, with pros and cons and even statistics, only to get back a deer-in-the-headlights “whatever you say, doc.”
aimai
@WereBear: Yes, I can well imagine both versions of myself, as well as multiple versions of the doctors I’ve had to deal with over the years.
Richard Mayhew
@Lee: Yeah, side effects and keeping the patient in comparatively better shape is definately a cost factor as a generally healthier patient who is puking less and it generally stronger will spend for less time in the hospital on average then someone who is and feels miserable with absolutely no strength to recover between treatment rounds.
OzarkHillbilly
@WereBear:
That is me at least 8 out of 10 times. I recently had a Doc insist on a test so he could decide whether or not to prescribe a med I had already decided I was not going to take. At first I was like, “Oh, alright.” but the more I thought about it, the more pissed I got. For that and another reason I won’t be seeing him again.
J R in WV
I want some proton beam treatments -0- how cool that sounds!!
Doctor, prepare the Proton Beam device for use~!
Prepared!
Ready the fusion reactor for high level power output~!
Ready!
ACTIVATE PROTON BEAM ~!~!~!
Now you have to imagine the sounds made by all this equipment…
Better than Star Trek!
tesslibrarian
@WereBear: The “whatever you say, doc” is what my in-laws do. When my m-i-l was diagnosed with breast cancer several years ago, neither of my in-laws asked asked a question, did a bit of research. Countless times, my husband would get off the phone with his mother entirely freaked out, I’d take < 2 minutes to look at reputable health sites (mayo, nih, jhu, etc), and tell him why what she was telling him wasn't dire, wasn't even unusual.
She was diagnosed with diabetes a few years prior to the cancer, and has never seen (nor intends to see) an endocrinologist. She recently brushed off my sister-in-law's concerns with, "she is only pushing me to see another doctor because she went to nursing school."
It's frustrating. And bewildering. But mostly upsetting, because there is no helping those who don't want it.
(edited for clarity)
WereBear
@tesslibrarian: You mean she’s not treating the diabetes?
That’s gonna be horrible.
Librarian
“Do you expect me to talk?”
“No, Mr. Bond, I expect you to get cured of cancer!”
aimai
@tesslibrarian: That is really terrible. I feel for you and your husband.
tesslibrarian
@WereBear: Oh, she’s on all sorts of medication prescribed by her GP. And for her other lingering health issues, also. But she only tests her blood sugar when she gets up.
We had no idea of any of this. After my husband started asking her lots of questions about her follow-ups for the cancer, she quit talking to him about anything at all. We only know about the latest diabetes issues (“this just happens sometimes”) because my brother-in-law emailed my husband to let him know they’d sat both of them down for a serious discussion and felt brushed off. They are not the most perceptive people, but they got that one right.
pseudonymous in nc
The NHS approach to this, I believe, has been to refer cases where there’s evidence for PBT’s benefits to the major Swiss facility that’s become a European hub for treatment, or for children, to a facility in the US. (All paid for by the NHS, including travel costs.) That’s because having treatment centralised means that you get consistent protocols, more experienced staff, and better research data. If the research shows broad value in the treatment, then the UK will get its own facility.
The US approach seems to have been for high-end hospitals to jump on the PBT bandwagon and roll out a bunch of facilities, because ka-ching, and they can advertise as having the latest and greatest (and most $$$$) medical toys.
tesslibrarian
@aimai: Even if she chose to ignore the endocrinologist, at least she’d have more information. She is smart enough that she’d act if told she needs to do so. I think she just doesn’t want to be told.
MomSense
I wish more people knew about your posts, Richard.
OT update. One of the little feral kitties we found and brought to the shelter has a forever home!! Her foster family named her Gracie and apparently Gracie and their young daughter have fallen in love. Gracie sleeps on her head at night and she is now a part of the family!! Yay! I found Gracie under a big hosta. Gracie is one of the cutest kittens I have ever seen. She is a muted calico with lovely markings.
WereBear
@tesslibrarian: Oh, hey, I’ve been in the same boat with relatives. They don’t want to think about it, because that would mean they’d have to do something about it…
My maternal grandfather found out he had diabetes… and stopped eating cake and pie. My maternal grandmother had high blood pressure for decades, and didn’t even know it until she started having a series of mini-strokes that ended in rampant dementia.
They were die-hard doctor haters for decades, blaming medicine for not saving my aunt. It’s a wonder they lasted as long as they did.
WereBear
@MomSense: Yay!
I tell everyone who has a good shelter nearby to take kittens there instead of trying to place them by themselves. That way, they get vet care, and go to someone who really wants a kitten.
Debg
Really enjoyed this post and the ensuing discussion. Great news about the kitten, MomSense! Helping people who don’t want to be helped = me and my dad on health issues, computer issues, pretty much any issue. There’s little but frustration on that path.
Slugger
Proton beam therapy was initially developed in the late 1980’s and early 1990’s to address the inaccuracy of the photon based radiation of that time. However, progress in photon treatments based on the improvements in computational power during the last thirty years has resulted in photon treatment being almost as on target as protons. At the present time, the difference is about one or two millimeters in accuracy. This means that there are only a few situations where this makes a difference.
The big difference is in the payment from Medicare where protons get a lot more money.
The purveyors of protons do very few randomized clinical trials. Many of the trials that are done come from Japan/Europe.
Next time you hear an ad about the latest and greatest treatment, you might reflect whether profit-making should be the goal of medicine.
Peter
But the real question is, how do proton beams affect ghosts?
schrodinger's cat
What about the long term radiation effects of protons? Does this cause secondary cancers down the line?
ETA: Laser beams are made up of photons not protons. The title is confusing.
schrodinger's cat
What about the long term radiation effects of protons? Does this cause secondary cancers down the line?
ETA: Laser beams are made up of photons not protons. The title is confusing.
schrodinger's cat
@MomSense: That’s wonderful! What about the other kittehs in the litter? Did you manage to get near them?
Mnemosyne
@Slugger:
Interesting! I would guess that’s probably why it’s markedly better for eye and brain tumors — where one or two millimeters can make a huge difference — and not much different for other kinds of tumors where that level of precision isn’t as necessary.
tesslibrarian
@WereBear: My sister-in-law thinks her meds overlap in ways that might be causing the problems–they sat down to talk about it during a week-long visit where she noticed our m-i-l having problems. But we don’t know what she’s taking for that or other health issues. My husband is just trying to come to terms with getting a bad phone call one day out of the blue–until now, we thought we’d know via his brother.
If I’d been talking to her, I’d have asked her if she thought my sister-in-law would be getting a kickback for the recommendation or something. But my husband never learned to be sarcastic to make points when dealing with his parents.
Snarki, child of Loki
@J R in WV: If I ever get a diagnosis like that, I’m going to demand ANTI-PROTON therapy.
They should pay ME for that, right?
Tissue Thin Pseudonym (JMN)
@MomSense: The cutest kitten in the world is the one you’re looking at right now. If you happen to be looking at multiple kittens, they are all the cutest kitten in the world. It’s not a tie; they are each individually the cutest.
If you don’t understand that, don’t worry; it’s how the kittens wanted it.
TriassicSands
I had two initial responses to your post. First, Medicare’s payment policies are crazy and must be changed. Second, Medicaid and Medicare should have identical payment policies. Universal health care should not allow for superior outcomes based on income levels.
By adopting more rational payment policies, Medicare could save a very substantial amount of money. Those savings could help offset increases in Medicaid costs caused by the adoption of equitable treatment policies. In a wealthy country, it is immoral to let income levels dictate the fate of sick and injured citizens. (I leave the question of residents and those without legal status for another discussion concerning what the moral obligations of a country are to treat non-citizens, whatever their legal status. There will undoubtedly be disagreement. Of course, as long as there are Republicans, there will be disagreement about pretty much everything I’ve written so far.)
Medicare’s current payment policies are designed to pamper people who are less interested in sound medical practice than in what they personally want. Any denial is automatically going to be interpreted as a “death panel.”
But Medicare’s current payment policies are unsustainable and not based on sound practice, which, unfortunately, will sometimes result in otherwise avoidable deaths. The problem is moving from population statistics to individual cases.
TriassicSands
Richard, this is America. Shouldn’t all treatment and payment decisions be based on their effect on the bank accounts of doctors and hospital administrators?
I find it difficult not to be cynical when considering our current health care system.
MomSense
@schrodinger’s cat:
I’m feeding the kittens and the momma because I can’t get to them. She found one helluva spot under a front stoop. For now they are fine but I will probably see if I can get some professional help. These kittens are so cute they’ll get adopted easily and I would at the least like to get the momma spayed.
Ultraviolet Thunder
@schrodinger’s cat:
Thank you. I’m a laser engineer and I assure you all that proton /= photon.
ETA; I worked for insurance companies for 13 years and the rest of your analysis is unfortunately spot on.
Botsplainer
@TriassicSands:
That would be my misanthropic, racist, never produced a dollar, lazy, just plain ass indolent grandmother and her hip replacement when she was 94. She wouldn’t leave the house or walk around much anyway, so what was the fucking use?
MomSense
@Tissue Thin Pseudonym (JMN):
I’ll have to send the pic to AL to post so you can see what I’m talking about!! Hearing the tiniest little mews and then pulling back big hosta leaves and finding the puff ball made it really special. You are right though–every time I look at a little kitty I think it is the cutest kitty ever.
libar
@Ultraviolet Thunder:
Actually, neither the word “photon” nor “proton” appear in the Bible. ergo. Photon != Real and Proton != Real ergo Photon = Proton.
Don’t be startled. That was just the sound of you being schooled … by God.
schrodinger's cat
@Ultraviolet Thunder: Indeed, photon = quantum of light, proton =
nucleon
rest mass of a photon = 0
proton =1.6 * 10^(-27) kg
photon = boson
proton = fermion
and so on..
Very different indeed
Richard Mayhew
@Ultraviolet Thunder: Sorry — when I was writing this, I was just playing the Death Star scene in my head — health insurance accuracy strived for at the cost of minor scientific accuracy.
MomSense
@Richard Mayhew:
I of course went straight for the “fire the photon torpedoes” as I read the post.
raven
chicken train
runnin’ all day
chicken train
runnin’ all day
chicken train
runnin’ all day
I can’t get on
I can’t get off
chicken train take your chickens away
laser beam
in my dream
laser beam
in my dream
laser beam
in my dream
I can’t get on
I can’t get off
laser beam’s like a sawed off dream
piratedan
@raven: ty for that Ozark Mountain Daredevils shout it… and it’ll shine when it shines… so on and so forth.
raven
@piratedan: Something like Spaceship Orion?
piratedan
@raven: well I was more of an EE Lawson kinda guy, but yeah, I enjoyed their stuff, not sure if they were ahead of or behind the times, just happy that they found some time…
https://www.youtube.com/watch?v=Qc6b8pdd7kU
JCJ
@Richard Mayhew:
Actually for localization for most radiation treatments lasers are used. I do not work in a clinic with protons but I would imagine lasers are used in those facilities as well. For brachytherapy and stereotactic radiosurgery lasers are not needed. Lasers can help sometimes with electron treatments but are not always needed. If proton facilities do indeed use lasers for localization then they would need to be “warmed up” and their alignment checked prior to being used on a daily basis.
As far as the main gist of the post I could not agree more. If some man with prostate cancer wants to be treated with protons that is fine, but the individual should pay any difference in cost. @Lee asked a question above regarding side effects. The proton folks should have to prove either better long term survival (overall as well as cause specific) or decreased morbidity. @Slugger mentioned the accuracy of protons compared to previous photon treatments. High resolution image guided intensity modulated radiation therapy really has taken away much of the advantage protons once had for most treatments. The treatment plans for protons do look a little prettier in that there is sometimes less dose to surrounding normal tissues, but does that matter? In children quite possibly. @Schrodinger’s cat asked about secondary malignancies. Since these often take a long time to develop it might take years to see any advantage. The NSABP B-04 and B-06 studies are both over 30 years old and I am not aware of any reports showing a significant increase in secondary cancers in the women who received radiation in these studies (they were both studies of breast cancer.) Side effects during treatments can be monitored both during and following and if there were a clear benefit to protons it should be evident.
As far as improved results in brain tumors – which ones? In children or adults or both? Radaition fields for glioblastoma are usually large enough that protons would offer only very little advantage in terms of how the plan looks, but would it translate in to bettter outcomes? Since the outcome in GBM is often quite poor I would be surprised. If you are referring to craniospinal radiation in a child with medulloblastoma I would imagine there is likely an advantage.
raven
@piratedan: Long long time for that one. . .
Roger Moore
@WereBear:
I can understand not wanting to take an animal to the shelter if it might be euthanized. If your local shelter is a no kill shelter, by all means take the kitten there.
schrodinger's cat
OT: The Onion has competition from the NYTimes!
Steeplejack
@MomSense:
Alley Cat Allies. Seriously. My friends in Atlanta took care of a whole colony of ferals living in the woods behind their house with the help of ACA. Got them checked by a vet and neutered—even the matriarch, who was incredibly street-smart and skittish. Here’s one of their videos, with a playlist of others by them and by ACA.
Note: When they neuter a feral they crop the tip of one ear as a marker.
Southern Beale
I’m pretty sure you can’t cure any cancer in this country without a colored ribbon and national series of race events. That’s what I’ve been told. Sorry, lasers.
Wag
@tesslibrarian:
What is your mil’s hemoglobin a1c? Is she well co tiles on one or two oral medications, or does she require insulin?
If her a1c is less than 7 or ( depending on her age) 7.5 and she’s on one or two meds, then seeing an endocrinoligist is the equilivent of the PBT for lymphoma or breast cancer discussed by Richard above. More expensive with equilivent outcomes. Same ahold for testing blood sugars. If a patient is only on oral meds, then frequent testing increases costs without any benefit. Medicare won’t pay for it.
Quite often the beat thing an elderly patient can have is an excellent PCP who calls for reinforcements only when needed
mtiffany
I would amend that statement: “the least expensive alternative, the choice of which preserves the most alternatives as viable options should it fail, should be tried first.”
There are treatment paths which, once chosen, preclude other paths of treatment.
Dave
As one who actually was treated for prostate cancer in 2005 with PBT, I think I have some authority to speak on the subject(an admittedly rare situation). I received a total dose of 76 Gy, fractionated over 44 treatments. My treatment was performed at Loma Linda University Medical Center in Loma Linda, CA, over a period of 9 weeks.
I remain cancer-free to date, but I understand there are no guarantees. I had very minimal side-effects, which included mild fatigue starting about mid-way through my treatment, and a little “sunburn” spot on each hip where the proton beam entered my body. This turned to tan and then disappeared within a few weeks. The fatigue subsided within a month after the end of treatment. I’ve had no quality of life issues with incontinence or impotence. Since I was only 57 years old when diagnosed, incontinence was my most feared side effect when I was trying to decide on a particular treatment. I felt like I could live with impotence, but really didn’t want to have to wear diapers for the rest of my life.
I also picked Loma Linda because they had been using this treatment modality since 1990, quite a long history. It was also closer to home than the only two other centers in the U.S. offering this treatment at that time (Boston and Bloomfield, Indiana).
I was also fortunate to have a job that allowed me to continue working remotely during my treatment. I also was lucky to have insurance that covered most of the cost. My largest out-of-pocket expense was for 9 weeks of temporary living expenses.
A few comments on the accuracy issue… While targeting technology may mean that conventional radiation has caught up with PBT in targeting accuracy, the physics of the proton beam delivers a higher percentage of the radiation to the targeted tumor, thus less radiation to the intervening tissue. This is important in reducing overall dose to the patient, which should result in fewer secondary impacts of the treatment. Additionally, Conventional radiation treatment plans must consider entry and exit paths of the radiation, while PBT only requires consideration of the entry path, since there is no radiation exiting the target. This is a really big deal with brain and ocular tumors, and no small thing with the prostate.
Long story, but I think there is more to measuring “effectiveness” than just considering whether the tumor is destroyed. Quality of life issues and long term results (fewer secondary cancers from the radiation) should also be considered.
JCJ
@Dave:
All true, but is this theoretical difference an actual difference? Loma Linda has been doing protons for at least as long as anyone, but have they reported a difference in either short term toxicity (fatigue, diarrhea, urinary symptoms such as burning, urgency and frequency) or long term toxicity (radiation proctitis, radiation cystitis, radiation enteritis, impotence, incontinence, secondary malignancies?) Also, do they still do 76 Gy over such a long course? For early prostate cancer IGRT can be done in 28 fractions or perhaps even stereotactic body radiation can be done in only five treatments.