Category Archives: Critical Consumer

Cancer Treatment Centers of America (CTCA) Effective?

[I wrote this originally as a response to a question asked by Quora by a Quora user. My response attracted the attention of an employee of CTCA, who engaged me in a debate that I felt was derailing, given that I have access only to what was PUBLICLY available. The employee then solicited the testimonial of a former patient to write a “non-answer” because she does not address “effectiveness” of this treatment center, only how wonderful she felt they were.]

1 Nov, 2012 My response is to the specific component of the question that talks about “effective”-ness, which in the oncology world tends to mean “survival rates.” I’m not talking bedside manners, or how nice everyone is, which are important for patient satisfaction of course, but is not a direct response to EFFECTIVE.

I was not discussing the treatment model, and since I have no conflict of interest (read: access to privileged data or have financial stake in the institution), I could only speak to what is available to me as a member of the general public.
12 Nov, 2011
I’ve seen many commercials for the Cancer Treatment Centers of America (CTCA) here in California. The commercials have one thing in common: comparing how the patient may have been treated (bedside manners) by oncologists elsewhere, versus how patients may be expect to be treated by oncologists at CTCA. I’ve seen 2 different commercials and both highlight how the patients were treated with more compassion and also had a good outcome (these patients survived long enough and are healthy enough to make these commercials.)

I’m sure you’ve already done the internet searches and read about the controversies with CTCA around their FTC settlement:

This was many years ago. Let’s assume for the benefit of this answer (since I’m not going to rehash what you can find searching for CTCA online), here’s the approach I took to answer this question, which asks about practices and treatments.

“What clinical trials are being offered or have been offered by CTCA, compared with other cancer centers?”

The rationale is that patients should expect standard-of-care cancer treatments by both CTCA and a comparator cancer center — but should also expect a substantive number of clinical trials offered by CTCA when compared with comparator cancer center — because this can be an indicator of “best practices” and “clinical options.”

I will compare CTCA with another for-profit treatment center, US Oncology (which has been acquired by McKesson Corporation in 2010).

As of 11/12/2011 a search on showed the following:

CTCA — 23 Studies total
US Oncology — 5928 Studies total

Compared with US Oncology, CTCA has significantly less # of studies total in “experience.” But this may simply be a function of tenure. If you’ve been around forever, then of course you’re going to have more “experience”, so let’s look at history:

CTCA was founded in 1988.
US Oncology was founded in 1999.

CTCA has been around 11 years longer than US Oncology. I’d expect CTCA would have a higher level of research activity. Let’s now look into specific research activities — back to the numbers — if I only include studies that are currently ongoing / recruiting patients:

CTCA — 7 studies total ( )
US Oncology — 1956 studies total ( )

Open studies means alternative treatment options for those patients who may not be able to tolerate “gold standard” treatment options or who may no longer respond / become refractory to the gold standard options. Here US Oncology wins with # of clinical trials available to patients.

Within the open clinical studies for CTCA, 2 of these trials aren’t treatments but rather nutritional/feeding interventions in patients with cancer. So technically, CTCA has 5 cancer studies open versus US Oncology’s 1000+. Also CTCA’s open studies are for solid tumors (breast, lung, liver, ovary) while US Oncology’s open studies span both solid and liquid tumors (leukemia, multiple myeloma). Of course, what actually matters is the patient’s cancer type as opposed to whether current options for studies are for solid versus liquid tumors.

Specific to CTCA, I looked into their page of treatment outcomes, since this serves as a major advertising point for patients: cancer patients want to go where they believe they may have an advantage when it comes to survival. I looked at their “statistics” on breast cancer and prostate cancer, but I looked at patient # that was used to come up with the statistic:

Prostate cancer: “61 advanced-stage prostate cancer patients who were diagnosed between 2004 and 2008 and who received treatment at CTCA for the duration of their illness.”
Breast cancer: “97 advanced-stage breast cancer patients who were diagnosed between 2004 and 2008 and who received treatment at CTCA for the duration of their illness.”

Immediately I have problems with these statistics:

Are you telling me that in 4 years’ time, you have treated only 61 advanced stage prostate cancer patients and 97 advanced stage breast cancer patients? I bet US Oncology treats that many patients within a 6 month period. Even if you have fewer centers than US Oncology, I take pause in these low #’s of patients included for analysis… until:
I look at this critical statement: “who received treatment at CTCA for the duration of their illness” — this means those who received treatment BUT DID NOT RESPOND WELL are likely EXCLUDED from the analyzed data. Why? Because patients with advanced cancer who are not improving at CTCA will likely go elsewhere to receive alternative treatments or get on a clinical trial. This means the data that was analyzed to show impressive survival rates may be SELECTED and therefore, BIASED.

In other words, I can’t believe these survival claims. It doesn’t mean that CTCA can’t be telling the truth, it only means that for the above, it is a selective sample and not necessarily the whole truth. Show me the # of patients who stayed for the duration of their cancer treatment at CTCA with the # of patients who LEFT for another treatment cancer for the duration of their cancer treatment and then we’ll have a more meaningful discussion.

Since I’d “deleted” the answer (it’s actually not truly deleted, but still resides on Quora if I choose to reactivate my account in the future) I wanted to include the comments from other (critically thinking) users. No doubt, my answer being featured in the Quora digest was what attracted CTCA’s “PR” damage control team. Hey, I used to work in pharma, I know all about tactics, and I also know from experience, this does not make the company / establishment more “credible”.
2013-01-06 01.06 AM22

Feb 27, 2013
One of my network colleagues happen to be using CTCA for her care and has this to say: “In 1 day at Cancer Treatment Centers of America they scheduled more diagnostics than what was possible at both ___ and ___ hospitals in months. I expect to know what’s what and options by close of business on Weds! This bodes well as I am not good at chewing cud!” — This is good feedback for the responsiveness of CTCA to this aspect of patient care.

Kanzius Cancer Treatment

Right now my conservative answer of the viability of this treatment is: it looks promising in theory, but it is too early to tell.

I look at VIABILITY of a cancer treatment along 2 general lines:

Promise of the cancer treatment and Scalability of the cancer treatment.

What makes any cancer treatment promising includes, but are not limited to:

Specificity — treatment must differentiate between abnormal cells and normal cells and be specific primarily if not solely to abnormal cells
Tolerability — treatment must be tolerable to patients such that the physical and emotional cost of receiving treatment does not exceed the benefits of receiving treatment (this is where we get into quality of life v. quantity of life debates)
Long term feasibility — treatment must be useful in the long term, both in terms of length of treatment as well as long term side effects. It is not uncommon for a cancer patient to keep one cancer in check with a cancer treatment, only to experience a secondary cancer due to the cancer treatment. This to me is trading one cancer down the road for getting rid of the cancer present in the body right now, and that’s not a good trade-off.

What makes a cancer treatment scalable includes, but are not limited to production concerns of:

Ease of production — treatment must be produced in large quantities with (relative) ease. If it is very complicated or difficult then the treatment becomes “too expensive” to produce thereby limiting affordability to a few.
Standardization of product — treatment production must be standardized so that from batch to batch you have fidelity of treatment “strength”. Autologous cancer vaccines for example, are not standardized because these require as raw materials the patient’s own tumor cells: every patient therefore gives rise to his/her own unique cancer vaccine. If it works, that’s great, but it will likely work only for that one patient.
Stability of product — treatment must endure distribution such that the treatment can get from one location (manufacturing) to the patient without losing its treatment strength. If you take out a vial of drug and it degrades within 5 seconds, it’s not going to do much good in a larger population.

I am not an expert in RF ablation therapy. But I can use the above rough criteria on the Kanzius cancer treatment and say “show me the human clinical trial data”.

I’m a stickler for wanting human clinical trial data, because I cannot tell you how many therapeutic interventions that look promising in preclinical (in vitro and in vivo) models that end up failing in human trials.

So when I see press releases from researchers who talk about preclinical data to generate a ton of buzz for themselves, I go a bit crazy. Because I see this as drumming up unproven hope for patients whose lives are literally on the line, and now you get the alternative (I’m NOT talking about complementary) therapy quacks flying in to prey on these patients by offering them large doses of colloidal silver or ginger pills or whatever pills that they will then talk about being “completely safe”. OK I’m digressing in this paragraph at this point, let me steer myself back to sanity.

The human clinical trials of RF ablation therapy will show us the degree of promise that this modality will deliver over the long term. It is too early to tell, and I fully support moving into human clinical trials to yield the data that we need to make any definitive statements.

Autism is NOT Over-Diagnosed

Autism today is better recognized, correctly categorized, and autistics offered more accomodation/treatment options than decades ago when they were misdiagnosed then hidden away in institutions and asylums.

Analysis follows:

One of the ways to examine this question of “over-diagnosis” is to go back to the evolution of autism diagnosis itself.

In Chapter 1 “History and Evolution of the Autism Spectrum Disorders” (Chapter authors Julie K. Irwin, Jennifer MacSween, and Kimberly A. Kerns) of The International Handbook of Autism and Pervasive Developmental Disorders (Springer 2011 — the authors described the following historical issues:

Children exhibiting autistic behaviors/symptoms prior to the 1940s were thought to be / diagnosed with schizophrenia.
In 1943 Dr. Leo Kanner at Johns Hopkins published “Autistic Disturbances of Affective Contact”, and labeled children he was observing with similar symptoms as “autistic” [the word autism was rooted in Greek: autos + state/action = autocentric thinking and behaviors that appear to withdraw from the social world]. Autism came from a Swiss psychiatrist, Bleuler who also coined “schizophrenia.”
In 1944 a German psychiatrist named Asperger used the same autistic label to describe children exhibiting similar symptoms and noted these children exhibited different symptoms than disintegrative personalities seen in schizophrenia.
In 1979, a UK-based epidemiological study of children under age 15 yielded the “triad of impairments” that we are familiar with today in lay language: (1) deficits in social communication, (2) deficits in verbal and non-verbal communication, and (3) deficits in symbolic play.

Thus based on the above:

The appearance of over-diagnosis in autism may be attributed to:

Our ability to diagnose autism more effectively today (we have more data and observations collected since the 1940s) than before.
Our awareness of autism symptoms that allow us to “find” children who may be suffering from autism (see my answer to Education: What is ‘Child Find’?)
The fact that autism used to be mistaken as schizophrenia and therefore, misdiagnosed in the years past versus today, when autism may be more accurately diagnosed.
The evolution of the autism diagnosis to include a “spectrum” — hence the term, “Autism Spectrum Disorders” to span patients who suffer from varying degrees of the impairments that are observed in autism.
The possibility of misdiagnosis of other psychiatric as well as somatic illnesses, including ADD/ADHD, OCD, Rett’s Syndrome, Pervasive Development Disorders Not Otherwise Specified (PDD-NOS), Angelman syndrome — that share characteristics of autism spectrum disorders but are not “autism” — misdiagnoses may also count toward “autism” prevalence when in fact should not be counted
Autism did not even appear in DSM (Diagnostic and Statistical Manual of Mental Disorders or DSM) until the 1980s in DSM-III. Before this, people suffering from autism were still shunted into the schizophrenia category.
The fact that we no longer treat patients with autism the way we used to treat patients with cancer: imprisoning them in homes and from schools and from society. Would you believe in the old days patients with cancer are kept in “cancer houses” and not allowed to come out because it was thought they were contagious or beset with the Devil? Well, patients with neurological and mental illnesses (and autism is debated on whether it should be considered a mental illness) suffered similar fates. In fact, children with disabilities were excluded from schools altogether, so you’d never see them. Now that we “see” these individuals, we may perceive there is an “increasing prevalence” when in fact, this is an artifact of people no longer being hidden away from view.

Pharma Companies that Can’t Handle Comments Should Get Off Facebook, Good Riddance!

Jonathan at Dose of Digital talks about pharma’s fear of Facebook pages centering around 2 issues that pharma thinks require 24/7 monitoring: Adverse Events and negative publicity.

I hear the same excuse on why pharma companies are so scared to look at patient comments on blogs: adverse events.

I’m sorry, but adverse events are happening whether pharma companies are monitoring or not, and this is different from monitoring whether someone’s posting something “bad” about your company (newsflash: not everyone’s going to like you, better to expect it and have rules to address it than bury your head in the sand).

Adverse events are crucial for patient adherence and avoiding Facebook comments for fear of posts on AE is a missed opportunity for pharma to engage with patients in an issue that they all care about.

Patients expect drugs to work — rarely will patients want to get on a pharma page to thank the company for making a product that works. You may have a cancer patient who will do this if the company has gone above and beyond the call of duty to help the patient gain access to the drug that the patient otherwise cannot afford. But for the most part, patients have a “love-hate” relationship with pharma companies that is more “hate” than “love”, and I can’t blame patients for feeling this way.

What patients gripe about, and fear, and dread, are the adverse events.

Adverse events chip away a patient’s hope of getting better.

Adverse events erode a patient’s quality of life.

Adverse events make patients wonder, “would I rather stay ill, or deal with this horrible side effect?”

Then they look at companies avoiding discussion about something that is so key to their treatment experience, they naturally assume “profits before patients”. Never mind the realities of bureaucracy in adverse event reporting, I know it’s a bitch… the FDA knows it too.

That’s how pharma companies come across in their being so scared about Facebook.

Funny… I rarely recall pharma companies coming across scared when some of their sales and marketing teams find creative ways to fly under the radar to promote off-label. Somehow these companies are fine with breaking the law to “expand” usage of their drugs, but now they’re claiming they can’t deal with lack of guidance where Facebook pages are concerned.

Better companies pull their pages off Facebook if they are hard-headed about not allowing comments. Leave those who are more enlightened to get those patients’ eyeballs and possibly gain some goodwill.

Companies who want to control the message and behave hypocritically are doing the right thing by leaving Facebook: they aren’t adding value on the social network anyway.

Pharma and Social Media: It’s Not About Controlling the Conversation, but Finding the Right Venues for Engagement

Now that Facebook Pages is to Marketing what LinkedIn Profiles is to Job Seeking – pharma companies are in pickle: Facebook is going to open up comments no matter what.

This means pharma companies can no longer restrict people from commenting on their Facebook pages.

Er…. DUH! Why is this big news? People get on Facebook to socialize – and not just to socialize – but to socialize in a mildly (or very) uninhibited manner. Facebook is MySpace done artfully and profitably, where we aren’t subjected to blinking starry page backgrounds or annoying music on auto-loop.

But remember why Facebook was created, and why Facebook has taken off with businesses – it is because when people are less inhibited, they are more suggestive, and more likely to click on links that businesses want them to click to buy stuff!

If businesses want stuffy and formal – there’s already a Facebook for that – it’s called LinkedIn.

I realize that it makes good sense for pharma to get its brands and company names out there. The problem is that when the public engages pharma, if they don’t ask about products, what would they want to engage pharma about?

[Assuming they aren’t interested in engaging pharma companies to ask, “why are you charging such high prices for drugs I need to save my life?”]

It’s akin to expecting a customer who drives a Toyota Corolla here in the U.S. not to engage the company Toyota to ask about the Corolla he drives. Unless that customer happens to work in an area that involves some business process, thereby predisposing the customer to want to ask about how Toyota “the company” works, customers often equate the company with the brands they use.

I understand that pharma industry supporters, including myself, would love if pharma can once again establish credibility with consumers by focusing on their support of disease state research and advancement.

Only another party’s already settled in that domain: they’re called physicians.

Physicians are typically seen as providers of support to patients in disease areas, from the consumer perspective. Let’s say I experience the symptoms of clinical depression – I’d naturally think, “I need to seek info from the doctors (once I learn more about this on the web)”.

I am not thinking, “I wonder what information GSK or Pfizer is providing in treating depression.” I’m not even thinking, “I wonder how Forest Laboratories or AstraZeneca are supporting R&D in depression relapse.”

But I may think in drug names, like, “I wonder if I should ask my doctor about Abilify, or Zoloft.”

[note: this would be an off-label use of Abilify, since Abilify is not approved for first-line use in treating depression, only as an adjunct to a first-line treatment if that treatment isn’t working as well as it should; it’s like a “boost”. But I use Abilify because I’ve been seeing so many ads on TV for it, and I honestly haven’t seen that Zoloft bouncy little ball in ages on TV.]

Thus there is first a cognitive hurdle that will not be easily passed. It is that diploma on the wall that garners the physician ‘credibility’, just as it is the commercial/business status that garners the pharma industry ‘lack of credibility’ when it comes to its participation as providers of information on the disease state, no matter how objective pharma tries to be.

In fact, even a recent survey of U.S. physicians had shown that they don’t want to pay for their own CMEs, yet they also won’t trust the CME content that is supported by pharma thereby making CME affordable (“free”) for them!

Logistically, the speed of Facebook and Twitter is exactly why Pharma should must hesitate.

People don’t go on FB/TW expecting a support-ticket time-frame (“slow”) response. They are on these platforms for just in time/immediate responses (“fast” “NOW!”). Otherwise, why bother? There are already online forums or patient info phone numbers for support-ticket speed “communication”.

It is not just about the platform, but the patient expectation that comes with the platform.

If you had ever engaged in a hashtag-driven Twitter chat, then you’d know how it’s next to impossible to follow every single conversation that comes at you in firehose fashion. Imagine then if there’s one or two patient complaints or problems amid the 20 other divergent discussions.

That’s what trying to retain “form” around a topical discussion may look like when Facebook comments are opened up for pharma.

[Lest any of us had forgotten – remember the “Motrin Mom” event, where a twitter indignation went viral and before the end of the weekend, the U.S. VP of Marketing at McNeil had to take that YouTube ad down? Try controlling THAT hashtag outbreak; I was there and saw how quickly it amplified.]

I’m 100% for increasing dialog between industry and consumers/public. Yet I think we can’t equate social media platforms the same, just as we can’t equate popular venues the same for medical education.

There are some social media platforms that are akin to a quiet, business like conference room.

Then there are social media platforms where people go for happy hour and unwind and engage in more personal conversations than business.

Then there are social media platforms where people go in expecting a brawl and in fact that’s why they showed up in the first place.

Pharma needs to identify these types of platforms and, rather than forcing or imposing artificial constraints by making everyone show up to a bar in a business suit.

The question Pharma needs to ask is, “is the purpose we intend to serve by showing up here feasibly achievable by the expectations of the crowd who will also show up?”