Happy Birthday wishes to my dear brother, with no wise-guy comments from me, like last year (and last week).
For my wonderful brother, who took the high road and promised not to say bad things about me in the Comments section of the blog, some Three Stooges.
The boys get hired to help prepare for a big birthday party -- Curly shaves some ice, then stuffs a turkey, does some dancing, and then helps Moe and Larry make and serve the cake:
And if you wanted the more traditional "Happy Birthday" song, you can get it here:
Hope you have a happy day, brother. See you soon.
Wednesday, November 18, 2009
Sunday, November 15, 2009
Been a While...
I don't usually like to go this long between blog posts. If it's more than about four days, I start getting phone calls and e-mails from people wondering if I'm OK. I haven't gotten any of those calls yet, but I don't want to push my luck. My apologies -- I'm fine, but I've been busy.
On Thurdsay, I had kind of a breakthrough with the research I've been doing, and I've been focusing a lot of my energy (and thoughts) on the subject. I'm pleased that my sabbatical hasn't been a waste. (Not that it had been a waste up to this point anyway -- I have already written and presented a well-received conference paper, and written and had approved a proposal for a new course.)
I've also spent the last week or so reading Evan Handler's book Time on Fire: My Comedy of Terrors. A few weeks ago, I linked to a PBS show on talking to your doctor, which included an interview with Handler, an actor who fought leukemia when he was 24 years old. Fascinating book. I still have a couple of chapters to go; I'll write about it in a few days.
I'll leave you with this:
Blogs are supposed to include lots of links, and I do my best to connect readers to other experiences. In about a week or so, a new set of 5 very special bloggers will be going online. They are part of Proctor and Gamble's project called "On The Go."
P & G will be sponsoring a public restroom in Times Square in NYC, through its Charmin brand, through the holiday shopping season, beginning November 23.
In a few days, they will finalize their choices for the five "On The Go Ambassadors," who will provide a full social media experience by providing us with "a daily peek inside the cleanest public restroom in Times Square," with updates through Blogger, Twitter, Facebook, flickr, and (God help us) YouTube. Links to all will be available through OnTheGo.com.
I wish my soon-to-be fellow bloggers much luck.
On Thurdsay, I had kind of a breakthrough with the research I've been doing, and I've been focusing a lot of my energy (and thoughts) on the subject. I'm pleased that my sabbatical hasn't been a waste. (Not that it had been a waste up to this point anyway -- I have already written and presented a well-received conference paper, and written and had approved a proposal for a new course.)
I've also spent the last week or so reading Evan Handler's book Time on Fire: My Comedy of Terrors. A few weeks ago, I linked to a PBS show on talking to your doctor, which included an interview with Handler, an actor who fought leukemia when he was 24 years old. Fascinating book. I still have a couple of chapters to go; I'll write about it in a few days.
I'll leave you with this:
Blogs are supposed to include lots of links, and I do my best to connect readers to other experiences. In about a week or so, a new set of 5 very special bloggers will be going online. They are part of Proctor and Gamble's project called "On The Go."
P & G will be sponsoring a public restroom in Times Square in NYC, through its Charmin brand, through the holiday shopping season, beginning November 23.
In a few days, they will finalize their choices for the five "On The Go Ambassadors," who will provide a full social media experience by providing us with "a daily peek inside the cleanest public restroom in Times Square," with updates through Blogger, Twitter, Facebook, flickr, and (God help us) YouTube. Links to all will be available through OnTheGo.com.
I wish my soon-to-be fellow bloggers much luck.
Wednesday, November 11, 2009
The Rules of Cancer
Really nice piece in the New York Times Online yesterday, on their Health section's Well Blog, called "The Rules of Cancer." It's a summary of a longer piece that will appear in Women and Cancer in December, but which is also available now online from CancerConsultants.com in an article called "A Survivor's Compass."
The article is written by a woman named Kathryn Gurland, who has seen two sisters go through a cancer experience, and now serves as a consultant to help others "navigate the system" (hence, "survivor's compass"). She's not so much a consultant with things like complex paperwork (though she may help with that, too); it's more about getting cancer patients to understand that they have control over much of the process of getting better.
It's very practical advice -- understanding that most cancers are not emergencies, and that there is time to stop and gather information about the best course of treatment; that it's OK to ask questions, even if it's the same question over and over because the answers aren't clear; that you should ask for what you need and make people aware of what you do not need.
Two pieces of advice from the article resonated with me especially.
The first is to make sure that everyone you deal with knows that you are a person. People treat people nicely; they don't treat "numbers" very well. I think it's a lot easier to do with your regular oncology team: the receptionist at Dr. R's and I talk about the Red Sox whenever I check in, and the woman who takes my blood knows that I like the radio station that she listens to, and tolerates it when I sing along. But I see them often enough that they know who I am, and they know my story, and they don't treat me like a number.
It's when I deal with other people, who usually aren't in a position to establish a relationship with anyone, that I instinctively let them know that I'm a person, and they need to deal with me as such. It's probably easier for some health professionals to just not get emotionally involved. So I force them to.
I had to have blood drawn at an outside facility a few months ago; the woman drawing my blood never even looked me in the eye. After she found a vein, I said to her, "That's a pretty good vein, isn't it?" She paused for a second, then said, "Actually, yes, it is very good." I told her, "That vein -- it's about the only healthy thing I have going for me." She laughed. We talked for a few minutes after that. She told me about her kids -- she was tired because her teenager was out late and she was waiting up for him.
And I like to mess with the PET scan people most of all. When I need to drink that nasty white milkshake-y thing, I tell them I'm imagining it's a pina colada and that I'm on a beach somewhere. Once, one of them told me I was out of my mind. Another time, when I was in the machine, the tech came on the speaker to ask me how I was doing. I told her she had made me extremely comfortable, and I was falling asleep, and I accused her of getting me groggy and then trying to sell me life insurance. But that made me a person.
The other piece of advice from the article that I really liked: Let everyone know what you don't need. I mostly liked it because of one of her examples -- "Not everyone wants to be thought of as engaging in a battle." I can imagine that's kind of an overwhelming thought for a lot of people, when sometimes just getting through the day quietly is enough of a struggle.
But it reminded me of something that someone told me once. I think it must have been Cancer Survivor's Day, and I told someone that I was a survivor -- anyone who had been diagnosed and was still alive was a survivor. This person, who actually does volunteer work raising money for breast cancer research, told me, "My friend X has breast cancer, and she told me that up until 5 years, you're a cancer victim, then after 5 years, you're a cancer survivor." I told her that victimhood didn't suit me, and that I'll never call myself a victim, and that once I label myself a victim, it means I've given up. I was a survivor, and I didn't plan on waiting five years to be able to call myself that. She was a little surprised at my answer, and so was I -- the whole thing got me a little pissed off -- but for whatever reason, her friend seemed to accept the label "victim" and I don't. It's a nice example of letting people know what you don't need.
Of course, the downside with all of this is that it is advice that's most effective when you know about it before you get cancer. But, as the article says, you start from wherever you are. It's never too late to apply the advice, and start empowering yourself. It's all about moving forward.
The article is written by a woman named Kathryn Gurland, who has seen two sisters go through a cancer experience, and now serves as a consultant to help others "navigate the system" (hence, "survivor's compass"). She's not so much a consultant with things like complex paperwork (though she may help with that, too); it's more about getting cancer patients to understand that they have control over much of the process of getting better.
It's very practical advice -- understanding that most cancers are not emergencies, and that there is time to stop and gather information about the best course of treatment; that it's OK to ask questions, even if it's the same question over and over because the answers aren't clear; that you should ask for what you need and make people aware of what you do not need.
Two pieces of advice from the article resonated with me especially.
The first is to make sure that everyone you deal with knows that you are a person. People treat people nicely; they don't treat "numbers" very well. I think it's a lot easier to do with your regular oncology team: the receptionist at Dr. R's and I talk about the Red Sox whenever I check in, and the woman who takes my blood knows that I like the radio station that she listens to, and tolerates it when I sing along. But I see them often enough that they know who I am, and they know my story, and they don't treat me like a number.
It's when I deal with other people, who usually aren't in a position to establish a relationship with anyone, that I instinctively let them know that I'm a person, and they need to deal with me as such. It's probably easier for some health professionals to just not get emotionally involved. So I force them to.
I had to have blood drawn at an outside facility a few months ago; the woman drawing my blood never even looked me in the eye. After she found a vein, I said to her, "That's a pretty good vein, isn't it?" She paused for a second, then said, "Actually, yes, it is very good." I told her, "That vein -- it's about the only healthy thing I have going for me." She laughed. We talked for a few minutes after that. She told me about her kids -- she was tired because her teenager was out late and she was waiting up for him.
And I like to mess with the PET scan people most of all. When I need to drink that nasty white milkshake-y thing, I tell them I'm imagining it's a pina colada and that I'm on a beach somewhere. Once, one of them told me I was out of my mind. Another time, when I was in the machine, the tech came on the speaker to ask me how I was doing. I told her she had made me extremely comfortable, and I was falling asleep, and I accused her of getting me groggy and then trying to sell me life insurance. But that made me a person.
The other piece of advice from the article that I really liked: Let everyone know what you don't need. I mostly liked it because of one of her examples -- "Not everyone wants to be thought of as engaging in a battle." I can imagine that's kind of an overwhelming thought for a lot of people, when sometimes just getting through the day quietly is enough of a struggle.
But it reminded me of something that someone told me once. I think it must have been Cancer Survivor's Day, and I told someone that I was a survivor -- anyone who had been diagnosed and was still alive was a survivor. This person, who actually does volunteer work raising money for breast cancer research, told me, "My friend X has breast cancer, and she told me that up until 5 years, you're a cancer victim, then after 5 years, you're a cancer survivor." I told her that victimhood didn't suit me, and that I'll never call myself a victim, and that once I label myself a victim, it means I've given up. I was a survivor, and I didn't plan on waiting five years to be able to call myself that. She was a little surprised at my answer, and so was I -- the whole thing got me a little pissed off -- but for whatever reason, her friend seemed to accept the label "victim" and I don't. It's a nice example of letting people know what you don't need.
Of course, the downside with all of this is that it is advice that's most effective when you know about it before you get cancer. But, as the article says, you start from wherever you are. It's never too late to apply the advice, and start empowering yourself. It's all about moving forward.
Monday, November 9, 2009
Two Anniversaries
Today and tomorrow are special days. Each is a significant anniversary:
Today is the 20th anniversary of the fall of the Berlin Wall.
Tomorrow is the 40th anniversary of the premier episode of Sesame Street.
********************
I remember the Berlin Wall falling. (Here's Peter Jennings announcement of the news from 1989.) Isabel and I had met a couple of months earlier, as we started grad school at Northeastern and we were both beginning our teaching careers. Our offices were next to each other. I remember her wearing Hard Rock Cafe Moscow sweatshirt; she had gone to the Soviet Union with friends the year before. (The Hard Rock didn't actually open up in Moscow until 2003; her illegally-acquired bootleg attire just made her more attractive to me - I dug the bad girls back then.)
I remember Isabel telling us about her trip, and how she got the clear impression that the Soviet Union wasn't going to last much longer. So in some ways, it was no suprise when The Wall fell.
But what I remember most about The Wall falling was a student coming to me and asking if she could miss class for four days. When I asked why, she said she was going to Berlin with her father. Apparently, Dad was an entrepeneur, and when he'd heard that the wall was coming down, he made arrangements to fly to Germany. His plan was to get as much of the rubble as he could so he could sell it. He wanted his daughter to come along. How could I say No? I made her promise to write about it when she got back.
And she did write about it. She wrote about watching her father take swings at the wall with a sledgehammer while she gathered the pieces up and shoved them in a bag. At one point, someone in a uniform yelled at them in German, so they took off running. Very entertaining stuff.
And she brought me back a piece of the wall. I still have it. Oh, sure, maybe it's just a three-inch chunck of concrete with blue paint on one side that she found on the street in Kenmore Square, but I still think it's a real piece of history. And if not, it's a good story.
******************
Now, as for Sesame Street: This has come up before on Lympho Bob. I know the whole topic upsets my brother, because Sesame Street came out when I was a toddler, and my brother was already too old for it. So while I learned to count to 10 in Spanish and sing about the letter L, my brother "suffered through" Mr. Rogers, and only came out of childhood with the advanced people skills that he still possesses to this day. Sad, really.
I've loved Sesame Street all these years, and I still see life lessons in the episodes -- maybe even the kind of thing that you'd learn from Mr. Rogers. For example, one could easily learn about the Seven Deadly Sins through Sesame Street. Oscar is clearly a representation of Anger. Cookie Monster (my favorite, which I'm sure comes as no surprise) represents gluttony. I'm pretty sure that Lust is covered by The Count, but I need to think that through. Not sure how Big Bird fits into the whole scheme. Doesn't matter. The point is, I can count to 10 in Spanish.
But the life lesson I learned most and best from the Street was this: You've got to put down the duckie if you want to play the saxophone. Damn good advice for a cancer patient: some things you've just got to face.
Today is the 20th anniversary of the fall of the Berlin Wall.
Tomorrow is the 40th anniversary of the premier episode of Sesame Street.
********************
I remember the Berlin Wall falling. (Here's Peter Jennings announcement of the news from 1989.) Isabel and I had met a couple of months earlier, as we started grad school at Northeastern and we were both beginning our teaching careers. Our offices were next to each other. I remember her wearing Hard Rock Cafe Moscow sweatshirt; she had gone to the Soviet Union with friends the year before. (The Hard Rock didn't actually open up in Moscow until 2003; her illegally-acquired bootleg attire just made her more attractive to me - I dug the bad girls back then.)
I remember Isabel telling us about her trip, and how she got the clear impression that the Soviet Union wasn't going to last much longer. So in some ways, it was no suprise when The Wall fell.
But what I remember most about The Wall falling was a student coming to me and asking if she could miss class for four days. When I asked why, she said she was going to Berlin with her father. Apparently, Dad was an entrepeneur, and when he'd heard that the wall was coming down, he made arrangements to fly to Germany. His plan was to get as much of the rubble as he could so he could sell it. He wanted his daughter to come along. How could I say No? I made her promise to write about it when she got back.
And she did write about it. She wrote about watching her father take swings at the wall with a sledgehammer while she gathered the pieces up and shoved them in a bag. At one point, someone in a uniform yelled at them in German, so they took off running. Very entertaining stuff.
And she brought me back a piece of the wall. I still have it. Oh, sure, maybe it's just a three-inch chunck of concrete with blue paint on one side that she found on the street in Kenmore Square, but I still think it's a real piece of history. And if not, it's a good story.
******************
Now, as for Sesame Street: This has come up before on Lympho Bob. I know the whole topic upsets my brother, because Sesame Street came out when I was a toddler, and my brother was already too old for it. So while I learned to count to 10 in Spanish and sing about the letter L, my brother "suffered through" Mr. Rogers, and only came out of childhood with the advanced people skills that he still possesses to this day. Sad, really.
I've loved Sesame Street all these years, and I still see life lessons in the episodes -- maybe even the kind of thing that you'd learn from Mr. Rogers. For example, one could easily learn about the Seven Deadly Sins through Sesame Street. Oscar is clearly a representation of Anger. Cookie Monster (my favorite, which I'm sure comes as no surprise) represents gluttony. I'm pretty sure that Lust is covered by The Count, but I need to think that through. Not sure how Big Bird fits into the whole scheme. Doesn't matter. The point is, I can count to 10 in Spanish.
But the life lesson I learned most and best from the Street was this: You've got to put down the duckie if you want to play the saxophone. Damn good advice for a cancer patient: some things you've just got to face.
Friday, November 6, 2009
Bexxar
I write a lot of Zevalin (like I did a couple of days ago), but there's a second RadioImmunoTherapy (RIT) therapy available called Bexxar.
Bexxar works in roughly the same way as Zevalin, but uses a different type of radiation. The choice of using Bexxar or Zevalin depends on a few factors (too technical to get into here). I think we hear more about Zevalin because the rights to it have bounced around a lot, and the company that currently has its rights has been fairly aggressive about getting different approvals for its use. But the important thing is, they both work well.
So I need to give some love to Bexxar, the quiet cousin of Zevalin, too.
Two recent pieces on Bexxar:
The first is an article from the most recent issue of the medical journal Current Oncology called "131I–Tositumomab in Lymphoma." (131I–Tositumomab is the real name for Bexxar.)
Of course, the best part of the piece is that one of the co-authors is J. A. MacEachern from McMaster University in Canada.
The article is a review of 18 clinical trials on Bexxar, and looks at trends in the trials. Bexxar shows a complete response in 65-72% of Follicular NHL patients who had been previously treated. The authors think Bexxar is a promising treatment, especially as an option for patients who have not had success with chemo.
Which was the case with Jamie Reno, whose name has come up before in Lympho Bob (a link to a piece in Newsweek, where he interviewed Farrah Fawcett's oncologist soon after she died, in which the doctor gave passionate support for RIT.) Jamie tried the chemotherapy treatment CHOP in 1996, but had his fNHL come back three years later. Doing extensive research on his own, he decided that Bexxar was his best option. He writes about it in an article on the web site called LymphomaInfo.com called "Radio-Immunotherapy Saved my Life." It's an easy read, and makes the point pretty clearly about RIT's usefulness. He points out that results from a Bexxar trial will be available next year, and may lead to Bexxar getting the same front-line status that Zevalin now has.
Here's to hope.
Bexxar works in roughly the same way as Zevalin, but uses a different type of radiation. The choice of using Bexxar or Zevalin depends on a few factors (too technical to get into here). I think we hear more about Zevalin because the rights to it have bounced around a lot, and the company that currently has its rights has been fairly aggressive about getting different approvals for its use. But the important thing is, they both work well.
So I need to give some love to Bexxar, the quiet cousin of Zevalin, too.
Two recent pieces on Bexxar:
The first is an article from the most recent issue of the medical journal Current Oncology called "131I–Tositumomab in Lymphoma." (131I–Tositumomab is the real name for Bexxar.)
Of course, the best part of the piece is that one of the co-authors is J. A. MacEachern from McMaster University in Canada.
The article is a review of 18 clinical trials on Bexxar, and looks at trends in the trials. Bexxar shows a complete response in 65-72% of Follicular NHL patients who had been previously treated. The authors think Bexxar is a promising treatment, especially as an option for patients who have not had success with chemo.
Which was the case with Jamie Reno, whose name has come up before in Lympho Bob (a link to a piece in Newsweek, where he interviewed Farrah Fawcett's oncologist soon after she died, in which the doctor gave passionate support for RIT.) Jamie tried the chemotherapy treatment CHOP in 1996, but had his fNHL come back three years later. Doing extensive research on his own, he decided that Bexxar was his best option. He writes about it in an article on the web site called LymphomaInfo.com called "Radio-Immunotherapy Saved my Life." It's an easy read, and makes the point pretty clearly about RIT's usefulness. He points out that results from a Bexxar trial will be available next year, and may lead to Bexxar getting the same front-line status that Zevalin now has.
Here's to hope.
Wednesday, November 4, 2009
More Zevalin News
Good news yesterday about Zevalin; it has been given a new reimbursement status from Medicare/Medicaid.
Quick review: Zevalin is a type of RadioImmunoTherapy (RIT). Since blood cancers like lymphoma are moving targets, conventional radiation treatments don't work on them, unlike solid cancer, which stay more or less in one place. But RIT bonds radiation with a monoclonal antibody that seeks out lymphoma cells, giving each cancer cell a zap of radiation when it adheres to it. RIT has proven to be a pretty successful treatment for many lymphoma patients.
However, RIT is very underused, for a bunch of reasons, including the fact that it needs to be administered by a radiation oncologist, not a regular oncologist. Another issue keeping it from being used has been its reimbursement status; from what I understand, doctors basically lose money when they administer RIT like Zevalin. Even though it is an injected treatment like chemo, it hasn't been reimbursed by Medicare/Medicaid as an injectioned drug, but as a radiation treatment, which pays less to doctors.
The new reimbursement status removes one more issue that seems to have been holding back more doctors from using RIT. I like to think it hasn't been a really big reason -- I have more faith in doctors than to think they'd withhold treatment that could save someone because they'd lose a few dollars. (I know, I know -- probably naive, but my faith in humanity is what helps me get out of bed in the morning). Still, it was probably a kind of last straw in a list of reasons for a lot of doctors.
And, of course, this good news comes pretty soon after FDA approval for Zevalin to be used as a consolidation treatment after chemo. Some see this as another barrier broken down, since regular oncologists will be able to treat first with chemo before passing a patient on to a radiation oncologist.
From what I've heard, patients had a big role in pushing for the new reimbursement status. Power to the people.
Quick review: Zevalin is a type of RadioImmunoTherapy (RIT). Since blood cancers like lymphoma are moving targets, conventional radiation treatments don't work on them, unlike solid cancer, which stay more or less in one place. But RIT bonds radiation with a monoclonal antibody that seeks out lymphoma cells, giving each cancer cell a zap of radiation when it adheres to it. RIT has proven to be a pretty successful treatment for many lymphoma patients.
However, RIT is very underused, for a bunch of reasons, including the fact that it needs to be administered by a radiation oncologist, not a regular oncologist. Another issue keeping it from being used has been its reimbursement status; from what I understand, doctors basically lose money when they administer RIT like Zevalin. Even though it is an injected treatment like chemo, it hasn't been reimbursed by Medicare/Medicaid as an injectioned drug, but as a radiation treatment, which pays less to doctors.
The new reimbursement status removes one more issue that seems to have been holding back more doctors from using RIT. I like to think it hasn't been a really big reason -- I have more faith in doctors than to think they'd withhold treatment that could save someone because they'd lose a few dollars. (I know, I know -- probably naive, but my faith in humanity is what helps me get out of bed in the morning). Still, it was probably a kind of last straw in a list of reasons for a lot of doctors.
And, of course, this good news comes pretty soon after FDA approval for Zevalin to be used as a consolidation treatment after chemo. Some see this as another barrier broken down, since regular oncologists will be able to treat first with chemo before passing a patient on to a radiation oncologist.
From what I've heard, patients had a big role in pushing for the new reimbursement status. Power to the people.
Monday, November 2, 2009
Clinical Trials an Ethics
I always do a unit on ethics and writing with my students, because I think they should be aware of how they will deal with ethical dilemmas once they enter the workforce.
Ethics, I tell them, deals with gray areas -- things that aren't technically against the rules, but which might keep you up at night. An ethical dilemma is, by definition, an ethical problem with no clear right answer. No matter what you decide to do, someone is going to get screwed.
I read a really thought-provoking article from the New York Times last week on clinical trials and doctors who try to bend the rules to get their patients entered into a trial. It's a classic ethical dilemma.
Doctors have an obligation to their patients, to do whatever they can to see that the patient gets well. That's a kind of immediate obligation. They also have an obligation to see that their patients might be helped in the future, a long-term obligation.
Some doctors have patients who are no longer being helped by available treatments. But they know that some treatments available in clinical trials might be of some help. That's their immediate opbligation. But the patients don't necessarily qualify for the trial because they might have advanced cancer or other health probelms. So what do you do?
If you get the treatment to the patient, it might help. But if you bend the rules and get the patient into the trial, and it doesn't work (it's unproven, which is why it's ina trail) it might also throw off the trial results ("Wait -- we had a patient die while in the trial? We need to stop this now and investigate"). And there's the long-term obligation to the trial, ensuring the treatment is being tested fairly and properly.
Oy.
Some drug companies have "compassionate use" policies that allow unapproved drugs still in trial to be given to patients who wouldn't qualify for the trial, once the FDA approves the one-time use, and, I would imagine, the patient assumes all of the risk.
Someone in the support group gavce a link for a blog by a breast cancer patient. The blog is called The Assertive Cancer Patient, and the author, a former journalist, is in the middle of a compassionate use fight with Wyatt/Pfizer. The fight isn't going well. I wish her luck.
(Incidentally, The Assertive Cancer Patient is a pretty good blog. The author is very down on some aspects of Breast Cancer Awareness Month, which is a really nice idea, but which she finds to be exploitative in some ways, especially by companies that Put on the Pink but don't seem to be giving any monetary support to breast cancer research. Click around her blog for posts from the last month.)
Anyway, it's a very interesting dilemma, and while compassionate use seems like a reasonable solution, it apparently isn't an easy one. But then again, with cancer, there never really are any easy answers, are there?
Ethics, I tell them, deals with gray areas -- things that aren't technically against the rules, but which might keep you up at night. An ethical dilemma is, by definition, an ethical problem with no clear right answer. No matter what you decide to do, someone is going to get screwed.
I read a really thought-provoking article from the New York Times last week on clinical trials and doctors who try to bend the rules to get their patients entered into a trial. It's a classic ethical dilemma.
Doctors have an obligation to their patients, to do whatever they can to see that the patient gets well. That's a kind of immediate obligation. They also have an obligation to see that their patients might be helped in the future, a long-term obligation.
Some doctors have patients who are no longer being helped by available treatments. But they know that some treatments available in clinical trials might be of some help. That's their immediate opbligation. But the patients don't necessarily qualify for the trial because they might have advanced cancer or other health probelms. So what do you do?
If you get the treatment to the patient, it might help. But if you bend the rules and get the patient into the trial, and it doesn't work (it's unproven, which is why it's ina trail) it might also throw off the trial results ("Wait -- we had a patient die while in the trial? We need to stop this now and investigate"). And there's the long-term obligation to the trial, ensuring the treatment is being tested fairly and properly.
Oy.
Some drug companies have "compassionate use" policies that allow unapproved drugs still in trial to be given to patients who wouldn't qualify for the trial, once the FDA approves the one-time use, and, I would imagine, the patient assumes all of the risk.
Someone in the support group gavce a link for a blog by a breast cancer patient. The blog is called The Assertive Cancer Patient, and the author, a former journalist, is in the middle of a compassionate use fight with Wyatt/Pfizer. The fight isn't going well. I wish her luck.
(Incidentally, The Assertive Cancer Patient is a pretty good blog. The author is very down on some aspects of Breast Cancer Awareness Month, which is a really nice idea, but which she finds to be exploitative in some ways, especially by companies that Put on the Pink but don't seem to be giving any monetary support to breast cancer research. Click around her blog for posts from the last month.)
Anyway, it's a very interesting dilemma, and while compassionate use seems like a reasonable solution, it apparently isn't an easy one. But then again, with cancer, there never really are any easy answers, are there?
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