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Oct 28

Having never been affected by a prescription drug recall before, this is my only data point. But I’m still damn sure this isn’t the way it’s supposed to go.

Earlier this week Sandoz recalled a drug called methotrexate; which at my house, we use to manage the rheumatoid arthritis my daughter was diagnosed with as a toddler. I learned of the recall on the morning of October 26 from our Pharmacist, who said not to use the medicine anymore and to call Sandoz to find out how to return it and to report adverse events. That’s all the information he had. He gave me an 800 number to call. Sounds scary right? I mean, as if it’s not bad enough that your child has to live with a chronic illness, now you also have to worry that the medicine she’s taking could hurt more than it helps.

I called the number and it was answered brusquely by a woman who said (don’t quote me on my quotes, I didn’t record the call): “Genco, please hold” (click). While I was on hold, I googled Genco since I had no idea where I’d just called. Turns out they’re a supply chain management company, with a service line focused on managing pharma product recalls. I guess that makes sense.

When the woman came back on the line, she asked me what I wanted. I relayed what the pharmacist told me “my daughter’s medication was recalled and I was told to call this number about returning the medicine and about adverse events”. She pauses, “hold on.” I wait. She says she’s going to transfer me to the Medical Adverse Events department. She takes my name and number since she has to “announce” me when I get there. I was waiting some more, so I googled some more and noticed there was nothing on the FDA website and nothing on the news sites about it. Maybe that explains why the people in rheumatology at Children’s Hospital of Philadelphia didn’t know anything either.

Eventually I got clicked off hold and found myself listening to a recorded message listing the options I could select. None of the options said anything about a recall, so I selected option #8 for questions about Sandoz products. A woman answers and does say I’ve reached Sandoz. Thank goodness, since that’s where I thought I was calling in the first place. Before I can say anything, the first woman bursts onto the line and says who I am and asks if she can put the call through. The woman agrees. Then the woman at Sandoz asks me why I’m calling. I repeat what the pharmacist told me. Unfortunately, this woman seems to be unaware of a recall or why I’d be calling her, and transfers me to someone in the Medical Quality Group.

The person in the Medical Quality Group also asks me why I’m calling, and again I repeat what the pharmacist told me. She says “Genco’s supposed to handle that”. But then she does help a little bit. She explains that she’s just getting information about the recall now, she tells me the lot # and expiration date of the recalled product; she says it’s a voluntary recall because small glass flakes were found in the medicine as a result of delamination of the glass vials (guess I’ll be looking up delamination later). She asks if I got the patient letter, I told her I didn’t get anything except a phone call from the pharmacist and a phone number to call. She provides a phone number that I should call to arrange to return the medicine. Guess what, it’s the number for Genco. I stop her by saying, “you know, I’m far less concerned about finding out how to return your product than I am about finding out the risks to my child.” She pauses.

Her: We don’t have any health issues associated with the recall.

Me: Is there anything I should look out for?

Her: No. But of course if you “notice anything”, you should call us.

Yeah lady. I really feel like helping you out. (well, I didn’t actually say that)

The next day, with help from my sister who happens to be in pharma research herself, I did find out what the potential adverse reactions are for an injectable medication that had been contaminated with glass flakes as a result of delamination of a glass vial. But it didn’t come from Sandoz. It came from the information provided by another company who had a similar recall in the somewhat recent past.

I can’t help but wonder if this recall was for a more widely used medicine, like PLAVIX® or VIAGRA®, if information would have been shared more quickly or more freely, or even if the people who answered the phone at the hotline would have a clue as to what’s going on. A drug recall is a big deal for the people on that drug, it would be nice if it seemed like someone cared or could explain what the risks are for the patients. Maybe they really don’t care that much when the drug isn’t used by that many people. I don’t know.

Two things I do know are these:

Thank goodness for the friends and family network of people (this includes those online networks too) who can help you figure things out when the people who are supposed to provide information don’t.

And

Our pharmacist is someone we’re darn lucky to have in the “friends and family” bucket. He called me immediately with the news. He called the “hotline” number when I told him I had trouble getting information. He has since left messages (unanswered) for people at Sandoz, including the person who issued the notice to pharmacists. He got my daughter’s medication from another manufacturer so that she won’t have to miss this week’s dose.

That pharmacist will have my business for life.

Sandoz? Not if I can help it.

- Christine

Oct 19

reginaE-Patient Connections 2010 concluded several weeks ago, which means we’ve finally had enough time to recover, read evaluation forms and dozens of feedback emails, and to process it all with some perspective. And yet we still struggle to summarize it…

Favorite sessions? So much to choose from… e-Patient Dave’s opening with a rousing call to embrace the e-patient movement, Regina Holliday’s live art and touching story, Jonathan Richman’s hilarious pecha kucha talk, and many others.

Best information for health communicators? There was literally hours of content that could change or make one’s health 2.0 efforts.

• Dr. Hugo Stephenson, from iGuard, shared the results of millions of dollars of health marketing experiments and revealed the benefit health consumers want (medication alerts) and the single best way to reach them (think co-registration and partner opportunities).

• Ben Rubin, from Zeo, revealed their new business model (every Health 2.0 startup could learn from this) which is about being the hub for sleep solutions and community, not just about selling devices.

• Dr. Vic Strecher, from HealthMedia and UMSPH, showed compelling data that the personalization of stories drives dramatically better results, and that low-cost e-health coaching potentially has the same efficacy as expensive face-to-face interventions.

We’ve heard rave reviews about content of all three tracks - mobile, social, and games, but once again the magic of e-Patient Connections was in the “connections.” Attendees included an eclectic mix of patients, pharma marketers, non-profit public health educators, health 2.0 inventors, hospital PR professionals, researchers, and more. Everyone was open to sharing and making new friends, and a whopping 93% of attendees said they had met at least one person who might be helpful in their jobs/careers.

Maureen ByrneWhat captured the spirit of the event most was the keynote session by Maureen Byrne of Novartis and actor Andy Phelan. They shared their video project, “Becoming Christopher“, which was developed as a way to reach out and to support those who are affected by cystic fibrosis. It was an innovative health communication case, with some debate over the use of an actor to portray a person with cystic fibrosis.

There were some in the audience who were brought to tears as their own family used this video as a way to learn and heal. Others in the audience expressed the opinion that actors shouldn’t be used to portray patients. And yet, at the very end of the conference we noticed that a patient-blogger who was a vocal critic approached Maureen from Novartis and gave her a big hug, showing that indeed we can discuss our opinions and even disagree without being disagreeable.

Though we come from many different disciplines, we are united by our desire to understand the best ways to reach, engage and educate “e-patients.” Thanks to all for sharing and connecting.

- Kevin, Christine and the e-Patient Connections Team

PS - Friendly reminders…

Conference slides can be found at: http://www.slideshare.net/KruResearch
Conference pictures can be found at: http://www.flickr.com/photos/epatient
Conference videos will be posted starting in January.

Read these bloggers thoughts and summaries from the show:

And also Leigh Householder’s Liveblog Entries
http://www.whatsyourdigitaliq.com/2010/09/29/live-blogging-epatient-2010-patient-art-vocate/
http://www.whatsyourdigitaliq.com/2010/09/29/live-blogging-epatient-2010-what-physicians-think-about-epatients/
http://www.whatsyourdigitaliq.com/2010/09/29/live-blogging-epatient-2010-shorts-briefs/
http://www.whatsyourdigitaliq.com/2010/09/29/live-blogging-epatient-2010-the-empowered-patient/
http://www.whatsyourdigitaliq.com/2010/09/29/live-blogging-epatient-2010-e-patients-clinical-trials/
http://www.whatsyourdigitaliq.com/2010/09/29/live-blogging-epatient-2010-engaging-cf-patients/
http://www.whatsyourdigitaliq.com/2010/09/29/live-blogging-epatient-2010-better-advertising-storytelling/