Monday, June 22, 2015

60 Minutes Expose on “The High Cost of Cancer Drugs”


Last night CBS reran their expose of the high cost of cancer drugs in the U.S. which was narrated by Leslie Stahl - http://www.cbsnews.com/news/the-cost-of-cancer-drugs/

I was appalled the first time I watched this and doubly appalled the second time I saw it. Here’s what I remember from watching it:

  1. The cost of cancer drugs is ridiculously high – no matter where you live.
  2. Cancer patients in the U.S. pay significantly more for the same exact drug – e.g. Avastin – than cancer victims in other countries.
  3. By law, drug companies in the U.S. get to charge anything they want for these drugs.
  4. Dying cancer patients often go broke/bankrupt trying to pay for these exorbitantly expensive drugs.
  5. The drugs don’t work miracles (like actually cure something) and often just extend lives by weeks or months.
  6. New cancer drugs rarely offer any important advances in effectiveness or patient benefits.
  7. Cancer doctors get kick-backs for prescribing the newest, more expensive cancer drugs.
  8.  The only good news is that the good folks at Memorial Sloan Kettering, one of the nation's premier cancer centers, led by Dr. Leonard Saltz is chief of gastrointestinal oncology , have a moral backbone and decided to stop prescribing the newest, prohibitively expensive  and not particularly more effective cancer drug.
  9. They not only decided to stop prescribing it, they wrote a New York Times OP-ED article stating why they decided to do so.
Here's a link to Sloan-Kettering's  OP-ED co-written by Peter B. Bach, Leonard B. Saltz and Robert E. Wittes (my new heroes). http://www.nytimes.com/2012/10/15/opinion/a-hospital-says-no-to-an-11000-a-month-cancer-drug.html?_r=0

Shockingly, “Right after their editorial was published, the drug's manufacturer, Sanofi, cut the price of Zaltrap by more than half” said Dr. Peter Bach Sloan’s in-house expert on drug costs.

I recommend that you watch this and, if you live in the U.S., write your congressman. If you don’t live in the U.S. write your relevant governmental agency and thank them profusely.
 

Thursday, June 11, 2015

Caring for the (Brain Tumor) Caregiver


I have great respect for caregivers of all shapes and sizes. My wonderful sister was my caregiver when I came home from my first brain tumor operation. She was patient, attentive and gentle.

She did all that in spite of the fact that I was a mess: I had trouble walking, my short-term memory was reduced to about a nanosecond and nobody in their right mind would let me near a stove. Said differently, she was an angel and I was incredibly lucky.

In a month or so, though, I became nearly self-sufficient – so much so that my wife could leave me at home alone with huge worries.

Not all brain tumor victim caregivers are so lucky.

If you or your caregiver is not so lucky, I think you’ll find the American Brain Tumor Association’s “Caregiver Resource Center” section particularly useful: http://www.abta.org/brain-tumor-treatment/caregivers/
 
It’s got information on:

  • The Impact on the Family Unit
  • Helping the Children and Teens Cope
  • The Role of the Caregiver
  • Managing Physical Symptoms
  • Managing Cognitive Symptoms
  • Caring for the Caregiver
  • Getting the Help You Need
  • Safety at Home
  • Tips for Extended Family and Friends
  • Navigating the Health (USA) System
  • Caregiver Terms and Worksheets
And, just as importantly, it’s got caregiver videos: http://www.abta.org/brain-tumor-treatment/caregivers/caregiver-videos.html  The videos are honest, raw and informative.  Please don’t underestimate the importance of these videos. Just like brain tumor support groups for patients, I find that connecting caregivers with other caregivers, somebody to talks to who really understands your problems, provides a world of good.

Thursday, June 4, 2015

The Importance of Resilience

Here’s a link to a nice article by a group of writers about the “importance of resilience” – how some children bounce back from adversity better than others: http://content.time.com/time/magazine/article/0,9171,1015897-1,00.html

As you may guess, I see this as not only child development learning, but also instructive for brain tumor victims.

As I talk to brain tumor victims and stroke groups, I find some people determined to maximize their “new normal” and others in the midst of giving up and shutting down no matter how much support or love or attention they receive.

Most of the article is written with child development in mind, but I love the idea of helping brain tumor victims improve their resilience, build their resilience and fortify their resilience.

I hope it similarly inspires you.

John