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How Much Would You Pay to Survive Four Months Longer with a Terminal Disease?

A new study of a cancer drug raises a difficult question.

by
Theodore Dalrymple

Bio

February 25, 2014 - 2:30 pm
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When I was young enough still to consider myself rational, I was irritated by patients who tried any remedy in desperation to save themselves from their fatal disease. I have long since mellowed and when an acquaintance of mine with glioblastoma, a rapidly fatal brain tumor, decided recently to go to India to try Ayurvedic medicine, all I could do was wish him luck – sincerely so. After all, the scientific medicine — which he would continue to take while there — offered him little enough hope, a few months at most. (This case, incidentally, illustrates an important point: alternative medicine, so called, is not generally alternative, it is additional.)

Two trials of a very expensive monoclonal antibody, bevacizumab, in glioblastoma, published recently in the New England Journal of Medicine, make disappointing or even dismal reading. This antibody is directed at vascular endothelial growth factor that promotes the growth of new blood vessels; glioblastoma is a tumor particularly rich in new blood vessels, and so it was hoped that by preventing them from forming, tumor growth would either be prevented or at least slowed. Early results were promising but as has so often been the way in the history of medicine, early promise is not fulfillment of promise.

In one trial, for example, 637 patients with this terrible tumor were randomized to conventional treatment plus placebo and conventional treatment plus bevacizumab. Although the latter had a slightly longer period free of progression of the tumor, their overall length of survival was not increased, and indeed they suffered so many more side effects that the overall quality of their lives was worse. The patients taking bevacizumab survived on average 15.7 months; those taking placebo survived 16.1 months. The authors of the paper end:

In conclusion, we did not observe an overall survival advantage first-line use of bevacizumab in patients with newly diagnosed glioblastoma. Furthermore, higher rates of neurocognitive decline, increased symptom severity, and decline in health-related quality of life were found over time among patients who were treated with bevacizumab.

This makes rather odd the concluding words of an editorial that accompanies the trials in the Journal:

Finally, it is worth noting that despite its limitations, bevacizumab remains the single most important therapeutic agent for glioblastoma since temozolemide. Ongoing and future trials will better define how and when it should be used in this population of patients for whom so few treatment options currently exist.

Clearly the viewpoint of the oncological researcher is not that of the sufferer of the disease: he is looking far into the future, while the poor patient (all the poorer if he has to pay for his drugs) is thinking rather less far ahead.

Comments are closed.

Top Rated Comments   
As a patient who has had cancer twice--now stage 4--I think what we all want is to make an informed choice. The side effects and benefits of chemo and other drugs are discussed more openly now. I have been luckier than most, I have had a long time to weigh the options, a long time to say what I want to say to those I love. For me, more chemo is off the table as a treatment option, I want to enjoy the days I have left with as much energy as I can have. So much progress has been made by the many, many talented clinician scientists trying to figure out these tricky diseases. In an ideal future, when the "cancer club" is closed down, I will be comforted knowing that what they learned from treating me led to more targeted, more effective treatment modalities. And on we fight, and on we live each day to the fullest.
21 weeks ago
21 weeks ago Link To Comment
I have my aortic root replaced in 1996, at 19. I thought I was ready to "go" then, but I deferred to my parents, and I learned that I needed a lot more spiritual growth. I got married, had four kids, and suffered an aortic dissection in 2011. Last year, I had my descending aorta repaired. There were serious post-operative complications. I nearly died several times. I ended up on a respirator, mostly sedated, suffering horrible ICU psychosis. I don't know much about what was real and imagined, but there were discussions about whether to "pull the plug." If I'd had my say, they would have, but my wife and parents fought for me, and I had the right surgical team who not only worked to keep me alive but they sought out the proper care and repair of my complications when others might have "pulled the plug." I've had another year with my wife and kids, and while every day has been full of pain, and while I'm far more limited than I used to be, I am grateful for the time.
21 weeks ago
21 weeks ago Link To Comment
Myself, not a dime.

"Survival" does not equate to a quality life.

If you have a disease that is terminal, why continue for whatever small bit of time you can wrest from the disease in pain, potentially bedridden, with a host of hugely unpleasant experiences to accompany your remaining time?

Of course, as a Christian, I know what will happen to me when I die.

We wouldn't inflict that kind of experience on an animal, so why subject ourselves to it?

When it's time to go, it's time to go.
21 weeks ago
21 weeks ago Link To Comment
All Comments   (35)
All Comments   (35)
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I lost my husband to oesophageal cancer last month at the age of 63, four months after diagnosis. He had been given chemo but it had had no effect on the cancer, and in fact the treatment merely reduced his quality of life during the time he had left. He had been a keen cook and enjoyed good food and fine wine. That was taken from him in his final days.

We knew the disease was terminal but the doctors had told him that chemo would buy him more time. In his last weeks they said radiotherapy would relieve the pain in his spine and buy him more time. He chose not to have the radiotherapy but to be placed under palliative pain relief, which he knew would have the effect of hastening his passing.

It was very hard for me and his son sitting by his bed waiting for him to die, but we accepted his decision to go earlier rather than suffer more pain and sickness, just to buy a few days or weeks more, confined to a hospital bed and unable to enjoy even a last decent meal.
21 weeks ago
21 weeks ago Link To Comment
Dalrymple drops a couple of hints in this piece that such extreme measures are also in part a form of experimentation. Something that is not well appreciated is that knowledge of how to treat a disease can come out of clinical experience as well as out of controlled trials. So, while some current experimental treatments are now "junk", as one commenter says, doctors and nurses giving treatments may well find ways to make the medicines significantly more effective. In fact, while controlled trials are necessarily somewhat rigid, to ensure uniform calibrated treatments, clinicians can observe how the treatments are actually working, and can make modifications on the fly. So it's quite likely that many medicines actually have more effect in the clinic than they were projected to have on the basis of regulated trials.

So if you have cancer and also have some level of altruism, if only for your children, it could turn out over a span of time that your treatment helps others survive for a considerably longer time.
21 weeks ago
21 weeks ago Link To Comment
Only in America. Medicare and Medicaid plus all those government employee plans means that our version of socialized medicine never says no. Unheard of in any other part of the world. That is why companies spend money developing this junk. Taxpayers cannot pick up these costs.
21 weeks ago
21 weeks ago Link To Comment
What a shame we can't "down vote" on this site.
21 weeks ago
21 weeks ago Link To Comment
Suppose the meds were free and that the payoff for 'buying time' was the advancement of knowledge re treatment? Worth it? I'd say yes.
21 weeks ago
21 weeks ago Link To Comment
Conventional wisdom has it that the majority would always choose to have "everything done" for themselves or their loved ones when faced with a terminal illness or accident. Not true! There are as many different reactions to illness or mortality as there are responses to anything else in life. There are those that readily accept their fate, those that succumb to depression, fear, anxiety, those that lean on their faith, those that fight like hell to the bitter end, those frankly, too ignorant or in other ways, aloof , apathetic, preoccupied who don't bother to assert themselves in these circumstances. Health costs stats only capture consumption. They do not capture costs saved by those who, for whatever reason, choose or do not partake in medical treatments/therapies.

I believe we should always attempt to respect the decisions and actions of patients and/or their families and make every attempt to maintain an informed populace by providing public anticipatory guidance for these type of healthcare scenarios.
21 weeks ago
21 weeks ago Link To Comment
I guess I get to look at this a little bit differently...
Having lost my mother in January from what should have been a treatable illness, I would give anything for her to have had the 3 or 4 months.
21 weeks ago
21 weeks ago Link To Comment
Sorry for your loss.

There's a difference, though, isn't there, between missing a window for effective treatment, and prolonging the inevitable?

In some cases, it makes sense. A woman is kept functioning long enough to carry a baby to term, or to see her first grandchild, or her son come home from war.

But for an elderly person, to spend several fortunes to eke out a few more weeks.... I'm not sure that really makes sense.

"To every thing there is a season, and a time for every purpose under heaven."



21 weeks ago
21 weeks ago Link To Comment
Howdy Mark v
Given the pain and other effects of aggressive treatment programs, struggling for the last few months is often agonizing as well as expensive. And if my son were on his way home, I might take all that.
Then again, if my dad was going through that while waiting for me, I might hide my tears as I said he should let go.
Tough calls; when people on the sidelines tell the people in the arena what they "must" do, I bristle up.
21 weeks ago
21 weeks ago Link To Comment
Yep. All of the above.

I 'got' to be the one to make my sister-in-law face reality, and held my brother's hand as he breathed is last after the machines were removed.

Had that discussion with my mother, brothers, and sisters about my Dad when his time came.

It ain't easy.
21 weeks ago
21 weeks ago Link To Comment
As a patient who has had cancer twice--now stage 4--I think what we all want is to make an informed choice. The side effects and benefits of chemo and other drugs are discussed more openly now. I have been luckier than most, I have had a long time to weigh the options, a long time to say what I want to say to those I love. For me, more chemo is off the table as a treatment option, I want to enjoy the days I have left with as much energy as I can have. So much progress has been made by the many, many talented clinician scientists trying to figure out these tricky diseases. In an ideal future, when the "cancer club" is closed down, I will be comforted knowing that what they learned from treating me led to more targeted, more effective treatment modalities. And on we fight, and on we live each day to the fullest.
21 weeks ago
21 weeks ago Link To Comment
I think it is inherent in most people to want to live. We can all philosophize about whether we would want to live if our illness severely reduces our quality of life, but I think most people would still choose life. One of the problems under our current system in the U.S. is the prohibitive costs associated with drugs and other treatments used to prolong life and add to the quality of it in certain circumstances. In large part, this can be traced directly back to a lack of free-market principles in medicine and the production of new drugs. The business end always adjusts to the rules of the game. The rule-maker is almost always government over-regulation. It should not cost drug companies a billion dollars and ten plus years to bring a new drug to market. Likewise, over-regulation in the practice of medicine, the construction of medical facilities, the development of medical devices, and the insurance industry is killing our society, businesses and innovation.
21 weeks ago
21 weeks ago Link To Comment
I've read drug trial results that conclude person X lived 4 months longer than person Y and think...Really ? All that for 4 months ?

Not to mention that drawing such a conclusion between individuals of varying biological makeup is something like comparing apples and oranges.
21 weeks ago
21 weeks ago Link To Comment
"Two trials of a very expensive monoclonal antibody, bevacizumab, in glioblastoma, published recently in the New England Journal of Medicine, make disappointing or even dismal reading."

This story of another monoclonal antibody (seek and destroy mission against protein on the surface of tumor) Brentiximab Vedotin was pretty fricking amazing to me.

http://www.dailymail.co.uk/health/article-2567455/Cancer-patients-lethal-70-tumours-disappear-just-two-WEEKS-thanks-pioneering-treatment.html
21 weeks ago
21 weeks ago Link To Comment
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