The Foundation Dedicated to Discovering a Cure for Neuroendocrine Cancer

Caring for Carcinoid Foundation

Ethics, Activism, and Education!

Hello everyone,

Happy Thanksgiving!

I’m giving thanks for all the amazing patients that I’ve gotten to know over the past five years.

3 topics to think about:

1. Clinical trials:

Is it ethical to deprive patients receiving a placebo in a clinical trial from the drug being tested…when such drug proves to have significant benefit?

2. Congratulations Canadian Rare Disease Activists!

The power of activism in any form cannot be underestimated.

3. 2011 Locations for CFCF’s Neuroendocrine Tumor Patient Education Conferences

Locations to be determined based on past patient and physician enthusiasm and participation.  Where do you want them to be?


1.  Clinical Trials

Did you read the New York Times article on Clinical Trials? 

Patients have few ways to treat their metastatic neuroendocrine cancer.  One way is by participating in clinical trials.  But, what should happen when one patient in a trial receives a placebo while his counterpart receives a highly effective drug (that a measurable decrease in his cancer burden)?  In one clinical trial testing melanoma drugs, described in the NY Times recently, patients receiving the placebo were prevented from receiving the drug, which was yielding great benefits for patients.  Some placebo-receiving patients died as a result of cancer progression.

Click here to view the full article from New York Times.

In your opinion, is this ethical?  Should a trial participant on a placebo receive the actual drug once it’s shown to benefit the other patients?  Another question: if you are on a clinical trial and have been receiving a drug, should you continue to?

E-mail me with your answers.  I believe the answers are:

No—this is not ethical.  It doesn’t meet the do no harm standard.

Yes—especially if the placebo-receiving patients are dying.

Yes—if you participate in a clinical trial, you should continue to receive that drug, if it has helped you, after the trial ends.

If you’re participating in a clinical trial, please discuss any concerns you have with clinical trials with your physician.  Always ask questions!

2.  Canadian Rare Disease Activists

Congratulations to Canadian activists for achieving progress on convincing the Canadian government of the need for treating rare diseases and orphan drugs differently, as the United States and Europe does.

Below is an excerpt from the article. Click here to access the full article.

Later in October, Health Canada will launch consultations on broad drug-regulation reforms and, for the first time, how orphan drugs should be treated differently and incorporated into the regulatory framework will be part of those conversations.

The department hasn't committed to implementing a formal orphan drug policy but the changes that will eventually be made as part of wider modernizations to Health Canada rules are considered major progress and a departure from previous positions.

"Certainly it represents to us a change in terms of their understanding of rare disorders and a different attitude toward these diseases," Durhane Wong-Rieger, president of the Canadian Organization for Rare Disorders, said in an interview.

Members of the advocacy organization were asking MPs to support an orphan drug policy when they were on Parliament Hill Thursday as part of an annual lobbying day.

There are thousands of rare disorders that affect only small groups of people, but altogether, an estimated one in 12 Canadians has a rare condition and many people are undiagnosed.

3.  2011 Locations for Patient Education Conferences

In 2009 and 2010, CFCF held fun and educational neuroendocrine tumor patient conferences in 4 cities: Boston, Los Angeles, Houston and Palo Alto.

In 2011, CFCF will return to locations where patients and key doctors were enthusiastic, supportive and turned out in great numbers.

Based on these metrics, CFCF would like to hold 2011 conferences in Los Angeles and Palo Alto, and a mini-conference in Houston.  We will hold one more in a new location.

Tell us where!

Tell us where the new location should be:

CFCF’s goals for patient conferences are:  Education – Unity - Equality

All patients should have the opportunity to meet others with the same rare disease, to learn from each other, to learn from the esteemed panel of expert physicians, and to unite toward the common goal of achieving a cure and improved, scientifically designed treatments.

For video and related materials from all previous CFCF neuroendocrine tumor education symposia please click here.  It’s free!

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