FMT Unavailable Due to COVID?

If you have had or are considering an FMT please share your experiences here.
Bure96
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Joined: Sat Oct 08, 2016 12:19 pm

FMT Unavailable Due to COVID?

Postby Bure96 » Wed Sep 08, 2021 10:43 pm

I just had my first appointment with an infectious disease specialist at Penn Medicine in Philly (Dr. Brendan Kelly) today to discuss my recurrent c diff. He said that it's very difficult to get an FMT right now due to COVID screening being too costly. Penn is not currently offering FMT and apparently OpenBiome is not accepting new stool donations and is only keeping a small number of stool preparations in frozen storage for emergencies.

I had my first CDI in 2016 and I got it again in July after a brief course of antibiotics. Yesterday I finished a second course of vancomycin (rapid taper) after I suffered a relapse following the first course. I am praying for no relapse over the next 2-8 weeks, but I suppose it's a coin flip.

With FMT seemingly not an option right now, the options presented to me if I relapse again are: (1) a longer course of vancomycin with a taper and pulse; (2) bezlotoxumab antibody therapy; and (3) enrolling in an open label clinical trial for Ecospor/SER-109, which my doc says could receive FDA approval next year.

Has anybody else been told that FMT is not an option for them right now? I am open to a longer course of vanco as well as the bezlotoxumab or Ecospor trial, but it's disappointing that FMT, which so many have found success with, is seemingly not available to me.

beth22
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Re: FMT Unavailable Due to COVID?

Postby beth22 » Thu Sep 09, 2021 1:06 am

I did not use OpenBiome for my FMTs. I used a family member. If your doctor did not offer that as an option, perhaps they don't do that, but you can call and ask. My donor did all the blood and stool test screenings. Now, I guess you would have to have the donor test for Covid as well.

Bure96
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Joined: Sat Oct 08, 2016 12:19 pm

Re: FMT Unavailable Due to COVID?

Postby Bure96 » Fri Sep 10, 2021 9:38 pm

Beth, can you explain how FMT works when you source your own donor? I assume my ID doctor at Penn won't perform an FMT with anything other than stool from Penn's own bank (and they aren't currently doing FMTs due to COVID), so I'd probably have to find another doctor that would be willing to do it with stool I've sourced from a relative (probably my wife).

It's been 3 days since I finished my second course of vancomycin and I just had a bout of D. I'm hoping it's just GI upset due to all the probiotics I'm taking, but honestly I'm expecting a complete relapse.

beth22
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Re: FMT Unavailable Due to COVID?

Postby beth22 » Sat Sep 11, 2021 1:22 am

When I had the FMT via colonoscopy, my husband had to "produce" the sample that morning before my procedure. The nurse at the endoscopy center liquified it with saline solution I believe and the doctor administered it. This was before OpenBiome I guess. I don't know if he still does this since OpenBiome is much easier and comes pre-packaged.

I have also done stool enemas myself with my donor's stool at home per my doctor's instructions. I did some after I had taken some heavy dose antibiotics. I have not done it in a long time, but if the need arises, I would do it again. My donor tested before to make sure that it was safe. The doctor was the one who suggested I do it and it worked for me.

lvg
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Joined: Tue Mar 30, 2021 7:56 am

Re: FMT Unavailable Due to COVID?

Postby lvg » Tue Sep 14, 2021 2:30 pm

Maybe consider looking into seeing Dr. Grinspan at Mt Sinai in NYC if that’s not too far. He’s an amazing gastroenterologist. I had an fmt with him using a family member as my donor since open biome was not in operation due to Covid. The family member had to get their bloodwork done and stool tested, as well as having never had Covid and also testing negative a week prior to the procedure. Not sure if any of those guidelines have changed since I had mine done. She had to pay for those things herself using her own insurance but thankfully insurance covered most of it and I reimbursed her for what it didn’t cover. I would have paid a lot more if needed though to be able to get the fmt when I needed it! Wish you all the best!

Rebecca1
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Re: FMT Unavailable Due to COVID?

Postby Rebecca1 » Sun Nov 28, 2021 2:38 pm

I had CDiff x3 in 2015 followed by succesfull FMT in 2016 using Open Biome Product. I am in Baltimore, MD and under sevices at Greater Baltimore Medical Center. I currently have CDiff after taking clindamycin in Oct 2021. Flagyl x14 days; knew it didn't take based on stool physcial characteristics (a polite way to put it!). Went right to Vanco x10 days (on day 2 right now) and praying with all my heart that this does the trick. And of course now my insurnace won't cover Vancomycin [I paid $350 OOP using Good RX to save me $600].

I reached out to Open Biome [earlier comments are correct; they have merged with Finch Therapuetics and are sliding down production and scaled down to either "non-emergent' or 'emergent' need based on geographical area.]. My current GI/hospital is not a "non-emergent" provider on the Open Biome website so in my current (failed ABT x1) my FI doctor is unable to order product.
Look up your zip code on their website and look for "non emergent" providers- for me i need to go to a neighboring hospital system if I relapse again. I asked OB about how a hospital could go from "emergent" to "non-emergent" and they replied with a fantastic email on 11/24/21 that i've copied/pasted here:

Dear Rebecca,

Sites were selected to ensure that geographic coverage of FMT access was unchanged across the US. We consulted with medical societies (e.g. AGA, NASPGHAN) and patient groups (e.g. the Peggy Lillis Foundation) to choose sites that would enable the most coverage in this first phase of our Referral Network. We have also not changed the number of pediatric sites in our network as these are a limited number of sites that provide FMT for pediatric cases.

Unfortunately, in places with high numbers of FMT providers, including all the very experienced centers in the area wouldn't be possible. We also had to prioritize geographic access and ensure centers were available to provide FMT in very remote parts of the country.

We will be continuously reviewing how things go over the coming weeks and months and if there is scope to broaden the number of referral sites in your state we will be sure to reach out.

Best Wishes,
The OpenBiome Team

Clinical Outreach Team
p: 617.575.2201 ext. 2
e: info@openbiome.org | w: openbiome.org
e: orders@openbiome.org

beth22
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Re: FMT Unavailable Due to COVID?

Postby beth22 » Tue Nov 30, 2021 2:06 am

I did not realize they had cut back so much, but I guess COVID must have something to do with it as well as they have to screen extra carefully. Would your doctor be willing to do FMT with a donor that you provide and have tested? That is what I did years ago, but I don't know if providers are still doing that. This was before OpenBiome.


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