The Assertive Cancer Patient

One Way to Keep a Story Out of Print (Or Try To)

One tried-and-true method that PR people use to keep a story from seeing the light of day is to ignore the reporter's requests for a comment or response.

Because then, if you run the story without their input, they can claim that it's biased--even though they refused to reply to questions or a request for an interview in a timely fashion.

I believe this was the ASCO PR folks' strategy when I wanted a reponse from them to my posts about the Abigail Alliance being kept off a panel about off-protocol use of new cancer treatments. It took the PR people more than two weeks to reply to my repeated requests for comment, and then when they did reply, it was a non-answer answer.

See: A Non-Answer From ASCO

Professional PR people respond to media requests within a few hours, typically, even if only to say that they are working on getting the info the writer needs.

Dean Forbes, at SCCA
So here's another one. I've been e-mailing and calling Dean Forbes, who handles PR for the Seattle Cancer Care Alliance, since Monday, to ask him about a doctor who until recently was on staff there.

His reply?

Deafening silence. Not even the customary, "I'm working on your request and will get back to you shortly."

Just for fun, I checked the SCCA Web site to see what it says about media relations. Here's the blurb:

Media Relations Policy

The Seattle Cancer Care Alliance's Director of Public Relations is available to assist journalists with questions regarding the SCCA, its partner organizations, and patients.

Our goal is to facilitate and encourage open and positive relationships between SCCA staff and the media while ensuring that all communications result in an accurate and appropriate portrayal of the SCCA activities.

The Public Relations staff is committed to guarding the privacy and confidentiality of all patients undergoing treatment while recognizing the rights of the individual patient to discuss any and all aspects of his or her treatment and health status with the general public through the media. Patients must sign consent forms before any information will be given out.

Journalists are welcome to visit SCCA. An escort will be available during visits. To arrange an interview, videotaping session, or photo shoot, please contact the person listed below.

Contact 
Dean Forbes 
External Affairs & Communications 
Phone: (206) 667-2896 
Email: dforbes@fhcrc.org

Uh, huh. Well, I'm tired of waiting. The story is going up.

@ Jeanne Sather 2008.

A Non-Answer From ASCO

When is the answer to a question not an answer?

When it doesn't answer the question, of course.

There may be a lot of words there, as in the answer I finally received from ASCO's PR people, but there's not a lot of content.

Let's see if you can decode it.

But first, the question.

I e-mailed ASCO on June 2, asking why ASCO refused to allow a representative of the Abigail Alliance to join a panel at the annual meeting on giving patients cancer drugs off-protocol.

(Here's more about that: ASCO Is Ignoring Me)

Finally, after several e-mail nudges, I received this reply on Wednesday, June 18--more than TWO WEEKS after I first asked for comment (Note to ASCO management: Fire your PR people):

Dear Ms. Sather,

Thank you for your e-mail inquiring about the session on Access to Investigational Drugs Off-Protocol that took place at ASCO’s 2008 Annual Meeting. I apologize for the delay in responding due to the high volume of inquiries that awaited us upon our return from the meeting.

ASCO’s Education Committee, made up of nearly 150 leading oncologists, is responsible for the content of the education sessions presented at the annual meeting, as well as the selection and invitation of the faculty. The educational objective of this particular session was to teach oncologists how to access investigational therapies for their patients when, in their professional medical opinion, it is believed their patient could have a beneficial response.

The panel for this session consisted of three experts in oncology who were selected based on their ability to educate and inform oncologists about the process for obtaining investigational drugs for the care and treatment of their patients. The speakers included medical ethicist, Ezekiel Emanuel, MD, from the National Institutes of Health who addressed the ethical and legal aspects of access to unapproved drugs, as well as Ann Farrell, a physician with the Food and Drug Administration, who reviewed the Agency’s expanded access program for experimental treatments. A third panelist, Judith Ochs, MD, with Astra Zenica, brought the industry’s perspective to the discussion.

Although there are others in the oncology community, including the Abigail Alliance, that have interest in the issues discussed at this session, the Education Committee felt that the breadth of knowledge, information, and perspective provided by the faculty serving on this panel fully met the defined educational objectives of the session.

We are pleased you were able to join us for ASCO’s annual meeting this year and hope you found the information presented in the scientific and educational sessions to be helpful from your perspective as a patient advocate as well.

Best,
Jenny Heumann



Jenny Heumann
Assistant Director, Public Affairs
American Society of Clinical Oncology
1900 Duke Street, Suite 200
Alexandria, VA 22314
Tel: 703/519-1427
Email: jenny.heumann@asco.org
www.asco.org

OK, Uh Huh...
I was there, and that is NOT what they talked about. I also know for a fact that the first chair of the panel dropped out in protest when ASCO refused to allow a representative of the Abigail Alliance to join the panel. That was the question I wanted an answer to.

What did they discuss? Whether or not a change in FDA rules to make it harder for cancer patients to get new drugs off-protocol, rather that in clinical trials, is a good idea. The panel was slanted toward the "make them join clinical trials" side of the debate.

Sigh. Guess we can't expect much more from an organization that gets the bulk of its funding from drug companies.

To read all my posts about ASCO 2008, click on this link and scroll down: ASCO

@ Jeanne Sather 2008.

ASCO Stalls, Responds (Sort of)

Here's the e-mail I finally received from ASCO, 10 days after I first e-mailed asking for comment on the Abigail Alliance controversy during the ASCO annual meeting in Chicago.

They didn't respond until I had e-mailed twice, and now the PR person is telling me that she has forwarded my e-mail to the policy folks. We'll see how soon they respond. You can bet that if I were working for the Wall Street Journal, or Newsweek, as I used to, I would have a response within the day!

Hi Jeanne,

I'm sorry no one has gotten back to you yet. I forwarded your email to the policy side of our department and they should be getting back to you today. [Which would have been the 12th; no answer yet] Unfortunately, we did not get your email until we had returned from the Annual Meeting because this email account cannot be checked from a remote location [she's kidding, right? This is the e-mail account for media relations inquiries that is on the ASCO Web site], so I apologize for the delay in responding.

Best,
Kelly

Kelly Powell
ASCO Communications
kelly.powell@asco.org

See also:

Abigail Alliance in the Wall Street Journal

ASCO Is Ignoring Me

@ Jeanne Sather 2008.

Abigail Alliance in the Wall Street Journal

The Abigail Alliance has a really good contributed editorial in the Wall Street Journal.

It was written by Steven Walker (who had responded to my questions about the ASCO controversy, see below) and Ronald Trowbridge.

The piece uses Senator Kennedy's brain cancer diagnosis as a news hook, a strategy that I am opposed to, but as a former mainstream journalist I know how essential that news hook is.

It says, in part:

"Most people receiving a terminal cancer diagnosis die before the most promising treatments in the pipeline reach them. Why? Because those tragic events occur on the wrong side of the magical moment when someone at the FDA puts an approval letter on a fax machine declaring the drug they needed – and never got – is 'safe and effective.'"

Read the entire story:

How the Senate Can Help Ted Kennedy

More on this topic:

Censorship Controversy at ASCO

ASCO Controversy: The Abigail Alliance Responds

Boycott Clinical Trials?

ASCO Is Ignoring Me

The ASCO Notebooks

@ Jeanne Sather 2008.

Pay Cancer Patients to Take Part in Clinical Trials

Several years ago, a major clinical trial to compare prostate cancer treatments had to be canceled because not enough men with the disease enrolled in the study.

The oncologist who told me about this said that the reason was men refused to be randomized between the radiation therapy and surgery arms of the trial. (An "arm" is a group.)

I'm not a scientist, but I fail to see why the researchers couldn't have done a "case-controlled" study, where they matched each man who chose surgery with a man of similar age, general health, and race (or whatever other characteristics they were interested in) who chose radiation therapy.

Guinea Pig Phobia
For various reasons, cancer patient participation in clinical trials is low--only about 5 percent of adult cancer patients. This is a problem for researchers and drug companies, because all new treatments must be tested in human subjects before they can be approved.

Now, at the ASCO meeting in Chicago, I learned that there is pressure on the FDA to change the rules for providing new cancer treatments to patients "off-protocol"--that is, outside of clinical trials.

I am opposed to any change that makes it more difficult for doctors to prescribe treatments off-protocol.

There are many reasons a cancer patient might not be able to enroll in a clinical trial. In addition, if drug companies and other researchers are having problems finding enough cancer patients to take part in their trials, they need to improve patient recruitment--not tighten access to drugs off-protocol.

One way to improve recruitment would be to PAY CANCER PATIENTS TO TAKE PART.

Now, researchers aren't going to want to do this, because it will increase the cost of the trials, but think about it--cancer patients who take part in clinical trials are risking their lives. They are also risking their quality of life during what could be the last months of their lives.

Why shouldn't they be compensated for the risks they are taking?

You can also expect researchers to say that paying subjects would skew the results, but I disagree. People are already being paid to take part in all kinds of scientific research, most of it much less risky that cancer clinical trials.

For example:

** Novum Pharmaceutical Research Services, in Las Vegas, advertised "for healthy individuals to participate in one of our paid research studies to earn up to $600.00." Novum Pharmaceutical describes itself as "one of the world's largest research companies in the testing of generic medications."

** Novum ran a second ad in the same issue of the Las Vegas "Employment Guide" seeking women between the ages of 18 and 50 to stay at its facility for two nights and apply various "investigational creams and ointments to your arms and make assessments." For this, the fee is $220.

Not research, but still giving up valuable bodily fluids:

** A company called LifeSera is advertising for paid plasma donors, who it said could "earn extra money twice a week." And more if they qualified for a "specialty program."

And while we are on the subject of money, do you know any cancer patients who are not having financial difficulties? I know maybe one, and she works for Microsoft.

@ Jeanne Sather 2008.

ASCO Is Ignoring Me

Here's the e-mail that I sent to the ASCO PR folks on June 2:

To: communications@asco.org

Question about Abigail Alliance

Hi--I attended a panel yesterday about giving patients cancer drugs off-protocol, and was told that ASCO refused to allow a representative of the Abigail Alliance to join the panel.

Can you comment please, for publication on my blog? I'm at ASCO now, and will be checking e-mail throughout the day.

Thanks,

Jeanne

Jeanne Sather
The Assertive Cancer Patient
www.assertivepatient.com

I'm resending the e-mail today (june 11), and we'll see if they reply.

The folks at the Abigail Alliance responded within a day.

Read more: The ASCO Notebooks

@ Jeanne Sather 2008.

The ASCO Notebooks

Here are the links to all of my posts about ASCO, in chronological order, from April 18 to the present. More to come: I still have lots to write about.

ASCO and a Better Mood

An Answer From ASCO, Sort Of

Time to Come Clean

Asco: Arrived in Chicago

ASCO: Amazing Organization

The ASCO Dress Code

ASCO: Herceptin Headlines

ASCO: Tykerb Warning

Censorship Controversy at ASCO

Sunday Highlights

ASCO: The Exhausted Cancer Patient

If You're Trying to Reach Me ...

ASCO Controversy: The Abigail Alliance Responds

Boycott Clinical Trials?

ASCO Is Ignoring Me

Support this blog: the donate button

@ Jeanne Sather 2008.

Boycott Clinical Trials?

Here's a question: Should we consider boycotting clinical trials until the FDA sees sense on the off-protocol issue?

Don't know what I'm talking about? Read these two posts, and then post a comment below and tell me what you think.

Censorship Controversy at ASCO

ASCO Controversy: The Abigail Alliance Responds

Remember, they (drug companies and cancer researchers) can't do it without us (cancer patient guinea pigs). Because the law says that no new cancer treatment can be used until it's tested on human subjects. Again, that's us.

The public has been very slow to get this, and participation rates in clinical trials are very low. (See: Soapbox No. 4: NIMBY to the Max) In general, I support participation in clinical trials, and I've taken part myself several times over the almost 10 years I've been living with cancer.

But now I'm beginning to wonder. After all, the drug companies profit hugely when they have a hit, like Genentech's Avastin and Herceptin. I think cancer patients should be PAID for their participation in clinical trials--after all, they are risking their lives.

But for now, let's keep the issue simple. And the issue right now is whether or not the FDA will tighten the rules to make it harder for oncologists to give their cancer patients new drugs off-protocol, which means outside of a clinical trial. Some 100,000 U.S. cancer patients are now receiving drugs off-protocol.

I think I'm one of them, actually. My treatment is a made-for-me combination of drugs put together by my oncologists. And it's working.

@ Jeanne Sather 2008.

ASCO Controversy: The Abigail Alliance Responds

I talked to Steve Walker of the Abigail Alliance on the phone while I was still at ASCO, but then ran out of energy before I got this post up. So here it is, better late than never.

Also, this debate is just heating up, as far as I can tell. So those of you with a thing for lobbying and jumping into the public debate, please consider doing so on this issue: Giving cancer patients new drugs off-protocol (vs. forcing them to get new or experimental treatments ONLY in clinical trials).

My earlier post was about a session titled “Access to Investigational Drugs Off-Protocol: What Do We Owe Patients?” chaired by a great doctor I know from Seattle, Tony Back.

After the panel, Tony told me that ASCO had refused to let a representative of the Abigail Alliance speak as part of the panel. Tony said that he and others on the panel considered canceling the session (because all viewpoints were not represented), but decided to go ahead.

Here's that earlier post: Censorship Controversy at ASCO

"It's not about good science anymore," the Abigail Alliance's Steve Walker said, "it's about power and money."

Steve said that the doctor who originally was to chair this panel at ASCO dropped out, because ASCO decision makers refused to let a representative from the Abigail Alliance take part.

Steve asked, "How can me have a rational discussion about OUR issue without us being there?"

I e-mailed the ASCO PR folks at the same time that I e-mailed the Abigail Alliance, but they (ASCO folks) have not gotten back to me. No surprise there, I guess. Kind of cowardly, though ...

The Abigail Alliance's purpose (from its Web site):

The Abigail Alliance is dedicated to helping create wider access to developmental cancer drugs and other drugs for serious life-threatening illnesses. The Abigail Alliance is promoting creative ways of increasing expanded access and compassionate use programs. We are working to help promote creative ideas to get promising new drugs to the market sooner.

The Abigail Alliance is dedicated to helping better inform cancer patients, other patients, and their doctors about the web sites, clinicaltrials.gov and cancer.gov. These important web sites list clinical trials of developmental cancer drugs and other important drugs. We need pharmaceutical companies to advertise these vital web sites.

The alliance's tools include lawsuits, lobbying, and more.

The reason for the debate NOW is that the FDA is in the process of changing the rules for receiving drugs off-protocol. I understand that drug companies are pushing for tighter rules, in order to force patients to get these drugs only in clinical trials, so that they (drug companies) can get the data they need to get their drugs approved.

My position on THAT is that drug companies and others who conduct clinical trials need to improve their recruitment of cancer patients--including paying patients who take part in trials--rather than tightening up the use of cancer drugs off-protocol.

Go to: Abigail Alliance

@ Jeanne Sather 2008.

If You're Trying to Reach Me ...

If you're trying to reach me, the best way right now (and normally, too) is to e-mail me at jeanne.sather@gmail.com.

It took me two days to get home from ASCO on USAirways (which was having a VERY BAD couple of days getting its passengers where they wanted to go) for various reasons and I'm pretty exhausted.

So I need to take it easy as I slowly get back up to speed--answering voice mail, paying bills, sorting out all sorts of paperwork, doing laundry, catching up with my dog, who isn't home yet, and then writing lots more about ASCO.

And of course I haven't seen either of my two sons yet, although Younger Son and I talked on the phone yesterday. Older Son is not returning my calls, for reasons yet to be determined. And I need to catch up with Car Guy. I'm making him an ice cream sundae tonight to make up for the $10 one I ate in Chicago without him.

It was an amazing event--I made all sorts of contacts and learned all sorts of things that I didn't know, and I met some people who I will stay in contact with, both for personal reasons (I like or admire them, or both) and because it will help advance my goal of having a voice in the debate about medical care in this country.

@ Jeanne Sather 2008.