Selling Sickness 2013

a tragic reminder how fragile life is

2016 started out with the tragic reminder of how fragile life is.  Last week one of my good friends – Karen Langhart took her life.  She was just 56 years old.

I will never forget when I first met Karen in 2012 about 6 months after the death of her 24-year old daughter, Erika, from a pulmonary embolism caused by her birthcontrol Nuvaring. We were at a conference in Washington DC and Karen got up in front of the 250+ audience to ask a question of the speaker.  She was articulate, smart, poised, and knowledgeable about the subject, and not to mention, quite stunning and tall.  I thought she was one of the researchers attending the conference. It wasn’t until she said that she was the mother of Erika who died on the prior Thanksgiving day of Nuvaring.   I immediately introduced myself and we became fast friends.

Karen was a mom on a mission to make sure that what happened to her daughter didn’t happen to another family. She worked tirelessly around the clock researching links, causes, and finally setting up a foundation in her daughter’s name – Informed Choice for Amerika.

The Langhart’s story was featured in Vanity Fair and on CNN’s Anderson Cooper.   They pursued legal measures against Nuvaring manufacturer Merck.  However, in the end they did NOT take the pitiful Merck NuvaRing settlement which would have silenced them for little $.  Last month Karen brought together activists, parents, researchers, film makers to Las Vegas for the first Woman Up conference.

Karen was truly a force that couldn’t be reckoned with. A brave soul.  She accomplished so much through sheer grit, passion and talent while enduring such deep personal loss.

She will be greatly missed by many.

For me personally, I am still processing her death and how it relates to the bigger picture of advocacy. Karen’s loss is truly significant not only to her husband and son, but to all of us.

Karen did what so many harmed families do. They want to stand up and make difference in a very cumbersome and difficult regulatory, legal and medical system.

Advocating for change after a personal loss takes a lot of energy.  You spend countless hours doing everything you can to make sure that no other family has to experience what we went through. Initially, it can be cathartic and help make sense of a tragic and unnecessary death. However, as one discovers the truth about the lies, deception and dangers, it becomes a bigger mission of wanting to make sure others have the information their family didn’t. Knowledge is power.

Advocating for change often feels like a very lonely road going nowhere. From the outside people see you as strong, driven, and effective in delivering your message. However, they often don’t see the inside tears being shed or when you go home to an empty house. Karen’s death is a reminder and makes me give pause to all my fellow advocates who have personally suffered yet are doing something about it. Self care is really important and recognizing when a break is needed. Your voice is the greatest asset for the issue.

Finally, these kind of tragedies don’t just impact the individual person, they affect families, friends and communities forever. Its has a ripple affect. The fall out from medical harm, regardless of cause, can add additional layer of suffering to the event itself. Loss, grief, anger, depression, and the damages to relationships are some of the many issues people experience. These stories of devastation left in the wake of medical harm must also be told and not forgotten.

There are real life consequences to this grueling and often unnoticed advocacy work. We need tireless advocates like Karen who are willing to stand up to corporations, the FDA, the medical establishment to make sure the truth be told. For its the unsuspecting and trusting families, like Karen, Erika, and Woody who pay the ultimate price. Just regular people living their lives until the unthinkable happens.

Karen’s legacy and the work she started will continue to inspire me and others for years to come.  Many lives will be saved because of her.

In the words of Margaret Mead, “Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has.”

RIP my friend.  I will miss you more than you will ever know.

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