My PSC and Vancomycin Advocacy Plans and How You Can Get Involved

It took me ten months to find a doctor who would prescribe me vancomycin and one year to finally find a hepatologist who was willing to help me pursue an official PSC diagnosis via liver biopsy. This is a long time, and I know many others have waited much longer.

It doesn’t have to be this way.

My passion is to share my story and do everything I possibly can to spread awareness about the life-changing potential that vancomycin holds and to help make vancomycin more accessible to patients who want to try it.

Why is Change Needed?

I am one of the lucky ones who had a gastroenterologist who had been educated about vancomycin for PSC. She saved my life by noticing my elevated liver numbers and putting me on vancomycin right away.

It breaks my heart to hear stories of PSC patients and their family members who desperately want to try vancomycin but are unable to access it, either due to insurance barriers or doctors being unfamiliar with it or unwilling to prescribe it.

This needs to change. Lives are at stake.

What Am I Doing to Make Change?

I’m working on several advocacy projects to help make vancomycin more accessible.

1. I’m participating in a research working group 

One reason vancomycin is so difficult to access is because it’s not approved by the FDA for PSC. So I’ve joined a research working group, newly organized by the Global Liver Institute, as a patient representative. 

My team and I are looking into several ways we can organize more studies to gather more scientific research on how and why vancomycin works. With this additional research, we hope it will give the FDA more proof and reason to approve the drug for PSC patients.

2. I’m gathering and sharing patient stories

As patients, our stories are powerful. Our voices are important. We can make change. We need more research, but we need your voices too. PSC is a rare disease, and we need to work together to make our voices heard.

That’s why I’ve created a page on this PSC Hub to share your vancomycin success stories. Things can never change if the world is not aware of the issue. Compiling these stories in one place can help spread awareness and anecdotal evidence of vancomycin’s potential.

If you or a loved one has had a positive experience on vancomycin, I’d love to feature it on my Success Stories page! Just fill out the form below.

3. I’m working to collect patient data

If we want to get vancomycin FDA-approved, data is needed to prove that it works. We also need data to understand why there is such a difference in patient response between brands.

I’m working with a group of doctors and advocates to brainstorm the most effective and efficient way to collect this data. More details to come!

How You Can Get Involved

If making vancomycin accessible to PSC patients is something you are passionate about too, there are a few things you can do to get involved and stay in touch!

1. Send in your or your loved one’s vancomycin success story

Like I mentioned above, stories are powerful. Share your vancomycin success story so I can share it on my website.

2. Say hello!

I love meeting others in the PSC community. Please feel welcome to reach out, introduce yourself, and share a bit about your PSC journey! You can message me here or email me at jenna@thecomicalcolon.com

3. Follow me on social media

If you’d like more content, be sure to check out my Instagram!

6. Share the PSC Hub on social media

Helping me spread the word about this PSC Hub would mean the world to me! Simply click one of the social media icons below. Thank you!

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