Whenever one person stands up and says ‘wait a minute this is wrong” it helps other people to do the same. Gloria Steinem
Catherine Duff is a C. diff. survivor, and was the sole voice representing patients at the US Food & Drug Administration workshop on FMT held in May. But at least the military was there. Yes, that’s right; the military scored an invitation. Yet not one patient support group was invited in circumstances where there are many to be found within seconds of hitting google. Catherine found out about the workshop by accident.
On the first day of the workshop, Catherine sat quietly fuming at this oversight and what seemed to be the cold complacency of the group as it discussed FMT in detached scientific terms. As in the story of the Emperor and his new clothes she wondered if she was the only person who could see that there was something missing. The next day she tore up her prepared speech and wrote a new one. When she took to the lectern she was trembling, but she knew she was speaking for the 14,000 people who had died unnecessarily of C Diff the previous year. By the end of her speech, she was in tears. As she tentatively raised her head, she realised that she was not the only one weeping. She received a standing ovation.
The mood in the room instantly ignited. Gone were the detached veneers as doctors heatedly tried to explain to the FDA that this is what they had to deal with every day – patients losing their health, their jobs, their savings, their sanity and their relationships as a result of this debilitating degenerative condition. And now they were going to have to say “sorry, I’m not allowed to offer you a fecal transplant.”
After the meeting Catherine was deluged with a line of doctors and others wanting to speak to her. She realised that she was not as alone after all.
Catherine had attended the FDA workshop because she had decided to establish the Fecal Transplant Foundation, a not-for-profit entity that will raise funds for research, community education and patient support. Many of the doctors present at the FDA meeting have offered to help. Projects the foundation will sponsor include raising awareness about fecal transplants, providing grants for research and clinical trials, helping to create a central database on FMT treatments and results, which will include an independent review of this data, supporting the development of donor bank technology and protocols, facilitating communication between patients and providers, arranging access to providers and clinical trials, current scientific and regulatory information, as well as patient’s stories. Catherine is also organising a petition to present to the FDA to allow clinic based FMT to continue while their investigation is underway. She will present this with a collection of real life stories of people whose lives have been devastated by C. diff. She is also preparing a press release for major U.S. media outlets to gather support for the mission of The Foundation.
When I spoke to Catherine I asked her about the challenges she sees for the Foundation over the next 12 months.
It is critical that we first receive our 501C3 status to ensure that donations are tax deductable. We then need to attract a cohesive reputable Board to oversee the Foundation. It is a challenge to find suitable people as they must be dedicated, free of conflict of interest and at least initially willing to work without remuneration. My over-riding challenge will be to make sure we are moving forward, regularly assessing our progress and taking the pulse of the current public and regulatory attitudes.
What motivates you to get out of bed daily to do this job?
Knowing that there is somebody out there, actually millions of somebodies out there, without anyone working for their best interests. I was in that position and I felt totally helpless. I don’t want anyone else to feel that way.
How is your health these days?
I am rid of C Diff but still have significant residual health issues. It has left me with malabsorption and gut issues and I particularly struggle to absorb calcium, which has aggravated longstanding orthopaedic problems. My immune system is not strong and I have to be careful not to expose myself to hospitals and medical facilities as I can’t risk getting sick and taking anti-biotics again.
Where did you first hear about FMT?
One of my daughters read about it and sent me a link. I was desperate and could not find a doctor who would perform FMT, so my doctor agreed to screen my husband as a donor and we did home FMT. Six months later, after another recurrence, I received FMT by colonoscopy at a medical facility.
What kept you going through your darkest moments?
I would like to say that I wanted to live for my kids, grandkids, and husband. But the truth is that in my darkest moments all I wanted was to die. I really don’t know what kept me going. Some kind of life-force within I guess. I believe in God but I don’t know if he has a personal interest in whether I live or die at a particular time. There were several times when I simply accepted that I had lost the fight. The bugs had won. But I didn’t die. I don’t know why.
How did chronic illness affect your relationships with people?
There was collateral damage to a lot of relationships. Some people became more incidental. They couldn’t deal with my illness or got sick of hearing about it. My husband has 2 kids with Crohns disease and is comfortable in the role of caregiver, so that made a big difference.
What is the cruellest thing anyone ever said to you about your condition?
When I had to go on anti-biotics again after having contracted C. diff. the previous time, someone reminded me that the definition of insanity is doing the same thing over and over again and expecting different results. What was I supposed to do? I had the choice between losing my colon or going on anti-biotics again so I chose the anti-biotics. It’s tough when people try to have an opinion on something they know nothing about and are not going through.
What was the most encouraging thing anyone ever said to you.
The most helpful advice came from friends who helped me to work out what to keep and what to let go. They advised me to let go of people who were not good for me, and that’s what I did.
What advice do you give to people who are now in the situation you were in, with anti-biotic resistant C. diff.?
My advice as the Chairman and CEO of The Fecal Transplant Foundation is to fight as hard as you can, within the system, for fecal transplant. My advice as one human being to another, in the situation I was in, is to do whatever you have to do.
To donate to The Fecal Transplant Foundation or offer your help click here.
To read the speech that earned Catherine a standing ovation at the FDA workshop click here.