Monique Doyle Spencer offers a damning op-ed about the unresponsiveness of Roche Pharmaceuticals to an off-the-shelf remedy (henna) for a widely known side effect (hand-and-foot syndrome) of its cancer drug Xeloda (capecitabine). The fact that she does so with her usual dry humor should not disguise that fact that she has a very serious and important case to make.
Putting aside the bureaucratically ham-handed response from the company to her suggestions, there is a real substantive issue here. Why isn't the company helping to tell the story of a low-cost, easily available antidote to that side effect? The drug they sell is an important and good one. The uncomfortable, and sometimes painful, side effect is openly acknowledged. The antidote works in at least some cases and clearly has no adverse impact on patients. (If henna has a major side effect, millions of Indian brides are at risk!) Why not tell them about it, or at least encourage others to do so?
Meanwhile, Monique herself has begun a small campaign to spread the word about this particular remedy. Check out this new blog she has set up, where she notes:
"I want to spread the word about this treatment. It's simple and cheap. By the way, I don't own any henna companies or websites of any kind. I'm a cancer patient trying to help anyone with this syndrome. If you have it, you understand why."
Pharma companies have all kinds of ways to get their message out when it comes to selling their products. Surely a clever person at this firm could figure out a way to do so here that would enhance their public image and not put them at legal risk. Maybe, as a start, Roche should link their website to Monique's blog.
Disclosure: I have not contacted anyone in our hospital to determine if we have any financial dealings with this company. We are often engaged in clinical trials with pharmaceutical companies, and we may or may not be with this company. As should be evident from what I have just written, any such relationship that might exist has had no influence on the content of this blog posting.
* = Hindi slang for "Yes, is it not?" Sorry, couldn't resist.
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22 comments:
These so called companies should take more heed. Are they not thmeselves offering a cure - so therefore shouldn`t this antidote be looked into. Sometimes it makes you wonder do they really care.
It's not just drug companies that refuse to deal with side effects. My wife is experiencing a serious neurological side effect from a drug that a BIDMC physician prescribed, and we cannot get an appointment with a neurologist at BIDMC to try to address that side effect until December. The prescribing physician knows nothing about this side effect. The side effect may well become permanent, and waiting 5 months for an appointment is going to make that more likely. BIDMC isn't being any more responsible than the drug company that refuses to provide any information about counteracting the side effect.
Paul - Don't you think that maybe the drug company could get in trouble with the FDA for promoting something that hasn't been approved, or somehow recommending something related to their approved medicine that is not included on the FDA's approved label?????
Maybe the patient, (or others), should contact ASCO (American Society of Clinical Oncology), or one of the cancer subspecialty groups to inform them of the treatment - both for their edification and to see if they can put together a more formal trial to see how and when it can best be used.....
re anon 9:09:
I don't know the details of that case, but that doesn't matter - one thing that's too often overlooked is that referral delays can actually lead to harm, and ought to be cataloged as such.
Please hear that, Paul. The data could be pulled together to assess how outcomes might have been different in various cases had an appointment happened within a week of the request. I'm pretty darn sure that the numbers would dwarf the new central line statistics you're excellently posting on your site.
In my case 20 months ago, as a defensive measure because delays had harmed my father (in Maryland), two months before my annual physical I asked my primary doc (at BIDMC) to refer me to a shoulder guy in advance, presuming that my symptoms would lead to a referral; we could cancel the appt if it wasn't necessary.
As it happens, the x-ray at that appointment led to incidental discovery of my kidney cancer six weeks before there were any symptoms, which my primary and I both believe saved my life.
Granted, that's an extraordinary case, but the problem is endemic. Here's the thing: if "it's all about the hospital," then referral delays are just something everyone has to live with; but in the new world of patient-centered medicine (see Tom Ferguson's model and Microsoft's HealthVault Copernican Shift slides), we simply won't put up with it. (Cf. our mutual friend's experience last fall, being unable to get a timely scan at BIDMC, and simply going elsewhere. Good thing she did, too, as you know; the delay would have caused nasty harm.)
Of course, I fully understand the logistical challenges - I'm just saying, somebody ought to be tracking that harm. And mark my words, all, the walls will start to crumble as the Copernican shift proceeds. Providers who say "There's nothing we can do about it" will eventually be irrelevant, because those who do figure out how to solve it will be publicized as having saved lives.
I am not sure where you got the idea that your wife could not be seen by a neurologist at BIDMC until December, but this is simply not correct. Any new patient who is referred by their primary care physician to BIDMC Neurology is seen within 2-3 business days. Just have her call 671-667-3090, and we will make the appointment right away.
If she already has a neurologist at BIDMC, then she may have to wait for an opening to see that person. But this should never take more than a few days. If that is the case, call the office of Dr. Clifford Saper, the chief of neurology, at 617-667-2622, and we will straighten it out.
btw, while riffing off of Anon 9:09's post, I forgot to mention - I've already circulated Monique's excellent op-ed to the Kidney Cancer list on ACOR.org. Lots of people there have hand-and-foot syndrome.
I really appreciate the interest in this issue. Henna has made such a difference in my ability to tolerate treatment. Since I hope I'm looking at many, many years of taking Xeloda, that's a pretty big deal.
I'm going to try Dr. Miller's approach and contact ASCO. Thanks for that.
The surprising thing to me was the legalistic, yet oddly disorganized, responses I received from Roche. I would have expected simple curiosity from them if nothing else.
I'm used to the world of oncology at BID, I guess!
Monique Doyle Spencer
P.S. A few people have asked me if henna dyes the skin. Yes. I look like I eat Cheetos with my fingers and toes.
Dear Dr. Saper,
Thank you -- I'm relieved to report that we were able to get an appointment for Friday with a different BIDMC neurologist by quoting your comments here. We appreciate your help!
Ditto for circulating the op-ed to an ovarian cancer patient friend who is posting it on her group's site. She was taking a different drug but had to stop it due to the same problem.
I can see Dr. Miller's point, but on the other hand you'd think Roche would have an interest in their drug being taken by as many people as possible and therefore want to help minimize the number of people who stop the drug due to complications. I just think their bureaucracy wasn't set up to deal with this sort of correspondence/information; hence the bizarre response. Too sad that computers or pre-determined scripts rather than cerebrating people answer most correspondence these days; many opportunities are lost that way. But profits must be made, mustn't they? (sarcasm intended)
nonlocal
nonlocal
Yesterday I received a letter from a grieving woman whose brother suffered for years from HFS while fighting for his life. I think of that man dealing with so much UNNECESSARY pain on top of chemo and it breaks my heart.
Anybody from Roche out there?
Heck, I might get on the phone and try to find a live "cerebrating human."
Kool and the Gang come to mind: Cerebrate, Cerebrate, Dance to the (Patient-Centric) Music...
You know, it's not as if it would take a six-month $100k market research project to find out what people want.
Dr. Miller,
You raise a very good point. I don't know the legal limits of what a drug company can cite about possible remedies to its side effects. Maybe someone out there can advise on this.
I understand that a drug company might face legal limits on something like this, but if that's the issue, it would be really nice if they'd just say so, instead of sending what appears to be a form letter and wishing her mother (who died in 1988) the best of health.
Hey, Monique has been holding out on us! :) Several weeks ago she started a blog of her own, to help share this information!
btw, HFS is a side effect of other chemo treatments, including the Sutent used for some kidney cancer patients.
Hi Dave,
I linked to it above. Maybe it wasn't clear. Glad you reinforced the point.
Doh! No wonder some of the wording sounded familiar!
So much for the infallibility of e-patient. :)
Any regulated "ethical" pharamaceuticals company official working in a company like Roche would sooner be boiled in oil than be accused of prescribing an unapproved substance. If you asked them if you should brush your teeth after meals, they would go to the legal department to assess their liability in responding.
Yeahbut, that still (imnsho) doesn't forgive a brainless form letter.
Lord knows they make enough money to afford thinking humans instead of the "trained monkeys" that some web sites joke about.
Dear Dr. Levy,
I am sure you get requests for medical advice all the time, but I hope you will consider my plea. My sister-in-law, Shin Na (you wrote about her in your blog today) has very aggressive cancer (started as breast cancer, now in liver, bones, brain). Shin lives in Singapore and is sharing her detailed journey including her entire course of treatment, drugs, and results through her blog at http://shinscancerblog.blogspot.com/
I know this is an enormous thing to ask, but if you could possibly let us know (via her blog would be best) any and all possible treatment options she may not be aware of. I realize you could not possibly recommend treatment, but if you could let us know what options are available so she can discuss them with her doctors in Singapore, it would be greatly appreciated.
Thank you for your consideration.
Sincerely,
Christine Raza
Hi,
I am sorry but I am not a doctor and so am not qualified to give that kind of advice. I'll pass along your request to others, though.
Thank you so much for passing my request on. I am thrilled and touched that you would even consider my request.
If you use pure safe henna to help alleviate HFS symptoms, be sure to purchase from a reputable supplier.
And if you are not so crazy about the dark stains left on the hands and feet , you can work on that too.,
If you mix your henna powder with boiling liquid and or mix it and leave it in a covered container for about 10 days you can exhaust a lot of the dye content.
When you leave the henna out it will not spoil as henna is also a natural antibiotic, and diabetic people also use it to help with foot pain.
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