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Archive for January, 2010

Those of us who have been immersed in advocacy work for a long time often think that no healthcare horror story can shock us any more. Wrong! This is the story of a patient fortunate to again be employed and insured through work, but who, like most Americans, is living only a few paychecks away from potential disaster.

This is what happened. After contacting his primary care physician due to increasingly severe abdominal pain, he was instructed to go to the ER , as it was a Saturday evening. The emergency room physician subsequently sent the patient for surgery, to repair a strangulated hernia. After surgery, he was transferred from the recovery room to the inpatient surgery floor, where he was kept overnight.

A week later, the patient received a form letter in the mail from his insurance company, stating that hernia repair was not a procedure for which hospitalization was authorized and therefore the night in the hospital would not be covered. On  the next work day, a Monday, the patient called his supervisor (who had been informed the previous Monday why he would not be at work) and asked who to contact about  the insurance matter. He was directed to the employer’s HR office to ask for troubleshooting help .  However,  before the insurance snafu could even be discussed, the HR clerk informed him that he was AWOL with the company!   She said that since a request for sick leave had not been submitted in advance of the absence, his leave would be without pay, with a reprimand note put in his record.

Fortunately, this case has a happy ending because there are still doctors who believe in the core values of the medical profession. The surgeon’s office quickly cleared up the “confusion” with both the insurance company and the employer.

Any wonder why we are struggling here in the US to get even the most basic of humane healthcare reforms and employment protections?

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Help for Haiti

Here are links for info and specialized resources of note:

Haiti Earthquake Relief page on Snopes.com

Snopes  evaluates urban legends, rumors ,and messages that especially are rife on the Internet. This is a reliable resource to help separate fact from fiction. Unfortunately scam artists see disasters as opportunities.

Several organizations are seeking professional Kreyol and French interpreters and translators as volunteers to work in Haiti and remotely. For details, plus  information on language pairs needed, contact the National Association of Judiciary Interpreters and Translators (working with the American Red Cross) and Translators Without Borders (working  with Doctors Without Borders).  A new networking group, Interpreters and Translators for Haiti has set up a Facebook page for communication.

The Hesperian Foundation, a non-profit publisher of materials for community-based health care, has Haitian Creole editions of the book Where There is No Doctor, Sanitation and Cleanliness booklet ,and Where Women Have No Doctor in PDF form, available to download for free on their website.  A Creole print edition of Where There is No Doctor is available for purchase.

Idealist.org continues to offer solid information, insights, and networking on rational and appropriate ways to help the people of Haiti. See the blog for the latest, including Helping Haiti: Things to Consider.


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Many readers likely know that this past November, the FDA held a first-ever public hearing on Promotion of FDA-Regulated Medical Products Using the Internet and Social Media Tools.  This  topic is both necessary and timely, which was brought home to me quite recently via an experience that my friend Jeanne Sather shared on December 29 on her blog The Assertive Cancer Patient.  Jeanne has metastatic breast cancer, and now has a tumor in an area of her skull.  After she blogged about considering various treatment options and deciding to pursue Cyberknife therapy, she shared that soon thereafter she received an astonishing email— astonishing for its audacity –from a Sherry Feldberg who identified herself as working for Accuray, the company that makes and distributes the Cyberknife machine. Cyberknife is a new kind of robotic device that delivers pinpointed targeted radiation. Further research  revealed that Ms. Feldberg is employed by Schwartz Communications , a Boston PR firm contracted by Accuray. The message that Jeanne received was as follows:

“From your post, I realize you have not yet had CyberKnife, but I’d still love to speak with you. As you’re keeping a blog, you’re clearly savvy when it comes to using new media which is a growing target for our awareness campaign. We have a CyberKnife Facebook fan page (you should join!), Twitter handle and one of our goals for the upcoming year is to monitor chat rooms in which cancer/CyberKnife is being discussed so that we can alert patients of the opportunity to share their story with these interested audiences.”

After Jeanne blogged on this, she then got an apology from the PR gal for having caused any personal offense , and which concluding with the following statement:

“To be clear, the patients we work with are strictly volunteers: Accuray does not compensate patients who share their treatment experiences with the media and/or other patients. Our goal is to make patients aware of media opportunities in which it might be relevant to discuss their experiences with CyberKnife. It is entirely up to them to participate, or not.”

Hopefully the newfangled  Cyberknife treatment will be very effective for my friend. On the business side of the procedure, the machines evidently sell for about  $5 million apiece and average cost billed per treatment course is said to be $65,000, straining the budgets of would-be buyers , payors, and users alike. So it does not surprise me that Accuray is seeking more patient volunteers for marketing testimonials (beyond those on its website) and more potential institutional customers, although Accuray’s CEO was quoted as stating at the 2009 shareholder’s meeting that the former was not the company’s game plan.  The crass and invasive approach used by the Schwartz employee goes well beyond even what is now customary in terms of the worst examples of direct-to-consumer and direct-to-patient advertising by biopharma and medical device companies.

This  scenario led me to do  more research on the new specialty field of online recruitment of patient volunteers for testimonials. I learned that the very same Schwartz employee also works on an account for Hologics, a company which now sells the Fetal Fibronectin Test (fFN or FullTerm Test), a biologic marker for premature labor intended for use when women with high-risk pregnancies present specific symptoms, not as a routine measure.  The test also can give both false positive and less frequently. false negative results, and must be administered rationally.   I learned of these patient contacts in the blogsphere, because Ms. Feldberg and  PR colleagues  Kirsten Fallon and Lisa Gyllstrom sent a pitch similar in vein, to a number of women who blogged about their own potentially  high-risk pregnancies. The writers said they wanted to be sure that the recipients  knew of the test and how it could help them.  Different versions of the letter recommended that informational links be added to one’s blog; personal stories be shared so that others could benefit; that the bloggers join the FullTerm Test page on Facebook;  and/or that for reassurance, the  women ask  their doctors about performing the test. One of the promotional missives was posted on the blog of  a woman whose  twins had died shortly after  their premature birth, and who was subsequently pregnant again.

The fFN test is not new, it’s been available since the early 1990’s, following the incidental discovery of the macromolecule fibronectin in a lab of Fred Hutchinson Cancer Research Center in Seattle. By 2006, sales of the patented test were bringing  some $50 million annually to Adeza Biomedical of California, to whom the Hutch had awarded the marketing license.  Subsequently, Adeza was sold to Cytyc, which merged the following year with  Hologic, a Massachusetts company.  A new marketing plan for  Hologic’s  newly-acquired product was then elaborated with a PR firm, as described in the following case study on the website of Schwartz Communications :

Today, Hologic is focused on marketing the test as a predictive tool at routine prenatal appointments for high-risk pregnant women.

The entry goes on to describe how Hologics and Schwartz collaborated on this novel approach for marketing the fFN test, since it was no longer newsworthy.  They decided instead to use the Internet and social media to their fullest, including:

Schwartz launched a social media campaign to cultivate a community of women informed about the fetal fibronectin test and motivated to tell others about it.

and

Schwartz monitored the blogosphere for women writing about their experiences with the fetal fibronectin test and, as appropriate, approached them to stay informed about “all things pregnant” via the Facebook fan page.

Monitoring public blogs for existing commentary on a specific topic is one thing, but it is hard to fathom how a major public relations firm  could think it appropriate to have their employees  breach the boundaries of decency to contact bereaved mothers and concerned pregnant women in general. Unless of course one holds the belief  that our personal misfortunes are terrific marketing opportunities. That would make it understandable that it’s perfectly OK to also target patients with brain tumors, cancer, and other very serious and life-threatening conditions, wouldn’t it?  One  has to wonder too if the Schwartz employees are paid on a salary or per capita basis  for each volunteer successfully recruited.  In all of the blog posts that I saw, Ms. Feldberg introduced herself as representing the company seeking patient testimonials, not the PR firm contracted by the manufacturer.  While industry codes of ethics may be considered as varying in their credibility, I did find that disclosure of relationships is listed among the Standards of Conduct of the Code of Ethics promulgated by Word of Mouth Marketing Association, an industry trade group.  For what  it’s worth, Schwartz Communications is not listed as a member of WOMMA.

If you are as outraged as I was about these kind of marketing tactics akin to ambulance chasing , there is something you can do about it!  The FDA is accepting  public comments on guidelines for use of the Internet and social media until February 28, by postal mail and by online form, following the instructions on their website. Don’t delay, they need to hear from us, not just from industry representatives who far outnumbered consumers at the hearings.

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