In August, Bob a much loved 57 year old husband, father and state administrator was having regular outpatient treatment in the local hospital in Kentucky, USA, for a non-gut-related condition. One day he had his regular treatment, developed diarrhea that night, went to the Emergency Department of the same hospital the next day, was admitted, and underwent testing to determine the source of the diarrhea.
When that hospital failed to come up with a diagnosis, they transferred him to a larger hospital in another city. Within hours, his family and friends were told that Bob had Clostridium difficile (C. diff). The family begged the hospital doctor to try fecal transplant but were told to stop wasting his time with “quackery”. Bob died the next day.
Not only has this family had to endure the sudden death of their loved one, they’re now also struggling to come to terms with the fact that Bob might have been saved, and that their suggestion was ridiculed in circumstances where fecal transplant has been proven to work for 93% of patients with C Diff. Regardless of whether the treatment would have worked or not, Bob and his family deserved a chance to find out. What was there to lose?
Unfortunately Bob’s Story is not an isolated event. Unnecessary deaths from C Diff are occurring in hospitals all around the globe.
THIS HAS TO STOP !
It’s been three months since the launch of PoP. We have now ironed out the technical bugs and feedback on the site has been very encouraging. Dr Shepherd’s interview has been the most read PoP post ever, with half the hits coming directly from people like you sharing on facebook.
My plan is to now start tackling the Media. On behalf of PoP I plan to write an Open Letter to the American Gastroenterological Association and other gastroenterological associations worldwide, with the support of the US based Fecal Transplant Foundation and the Peggy Lillis Memorial Foundation. A copy will also be issued as a Media Release.
I will ask these associations to acknowledge:
the existence of home fecal transplants
the importance of patients discussing FMT with their doctors before doing it at home
that this conversation will not go well, if doctors are uninformed, dismissive or accuse their patients of ‘quackery’
that negative attitudes from doctors, however well-intentioned are not conducive to collaborative medical care
that until more research is done on FMT, a harm-minimisation approach on the part of the medical profession is necessary.
I will suggest they implement 3 measures:
a FMT hotline for doctors to call when faced with someone dying of C Diff
a FMT information kit for doctors to refer to, when patients ask them about FMT
a harm minimization protocol for donor screening and support of those chronically ill patients who choose to do FMT at home (for whatever condition) with a legal disclaimer if necessary.
How can you help?
I need volunteers to collate a list of names and email addresses of journalists who have written previously about FMT (print, online or TV) and any media outlet who might be interested in a story about FMT. I will need the email address, not just the name. If you are living in a non-english speaking country, don’t let that stop you.
Regardless of the response received from these gastroenterological associations, the media release will build on the growing awareness of the link between gut microbiota and illness and escalate debate about FMT. It will pressure governments and the medical community to prioritise FMT research. As anyone with a google alert on this topic knows, the scientists are doing their bit, but they need public support and funding to better understand both the benefits and risks of FMT. The Fecal Transplant Foundation has a list of research waiting to be funded. But research will only happen if people start talking about FMT in the media in a way that is more than “Ick! Poop transplants!”
14,000 people like Bob* died of C Diff last year in the US alone. It has to stop. This time next year there must be protocols in place to help those like Bob, who are too sick to wait.
Please don’t dismiss this as a good idea that someone else should help with. On behalf of sick people all over the world I am asking you to find 15 minutes of energy and time, to hit google and send me a list of journalists with names and email addresses. I cannot do this on my own. All journeys start with one step, and if you really care about stopping this madness, the next step is yours.
*Bob’s name changed to protect grieving family
First they ignore you,
then they laugh at you
then they fight you,
then you win.