So, what’s next? How do we come together as a community and move the needle to help make oral vancomycin more accessible to PSC patients?
As of February 2023, there are two major things we need to support: clinical trials and the Access to Rare Indications Act.
Project 1: Support Oral Vancomycin Clinical Trials
In order for the FDA to approve oral vancomycin for PSC, we NEED to collect more data through clinical trials.
The Children’s PSC Foundation is the ONLY PSC foundation proactively funding and supporting oral vancomycin research.
They are currently helping support an oral vancomycin and Hymecromone combination therapy study at Stanford, a Microbiota Transplant Therapy study, and an oral vancomycin clinical trial in Italy. (Read details about these potential studies here.)
These projects are incredibly exciting…but they need more funding for them to happen. Donate to the Children’s PSC Foundation to make these studies a reality.
Project 2: Support the Access to Rare Indications Act
This bill, called H.R. 6160, was proposed in 2021. If it’s passed, insurance companies must provide an expedited appeal process for patients taking medications for rare diseases. (Like oral vancomycin!!)
The passage of this bill would be extremely helpful for PSC patients, since many of us are fighting insurance denials. Unfortunately, if the Access to Rare Indications Act isn’t introduced to the Senate very soon, the bill will be killed.
If the Access to Rare Indications Act gets passed, it may significantly help PSC patients access oral vancomycin.
How to Help Pass the Access to Rare Indications Act
We NEED this bill to be introduced to the Senate. There are several CRITICAL states in which we need PSC or rare disease patients to email their senators and ask them to cosponsor this bill.
If you’re located in one of the following states, please email find your state senator from the screenshot below, and email them using the email template provided below:
Colorado
Delaware
Massachusetts
Michigan
Maryland
New Hampshire
New Jersey
Ohio
Pennsylvania
Rhode Island
Virginia
Washington
If you have any questions, please email AccessToRareIndications@gmail.com.
Other Ways to Get Involved
Thank you for your interest in getting involved! Here are a few things you can do to help move the needle:
1. Share Your Vancomycin Success Story
I’m collecting PSC patients’ vancomycin success stories and publishing them on this page. My goal is collect many stories in one space so it helps build credibility that oral vancomycin is a promising potential therapy.
Also, sharing these incredible stories helps spread positivity throughout the PSC community that’s so often associated with fear. By sharing your story, you’re helping to give hope to other PSC patients and families who don’t know where else to turn.
2. Support Me on Ko-fi
If the PSC Hub has been helpful in your journey, consider supporting me on Ko-fi for less than the price of a cup of coffee! Everything I do (including building this website, doing PSC research, publishing PSC patients’ stories to my website, and leading advocacy campaigns) I do for free in my spare time.
Your donations will keep this website alive and thriving by helping to cover costs like website hosting, domain name renewals, and the hours I put into researching and keeping this site updated with relevant information. I appreciate you and thank you for considering!
3. Stay in Touch
I love meeting others in the PSC community! Please don’t hesitate to send me a message or email me at jenna@thecomicalcolon.com.
Whether you have a health story to share, have questions about accessing vancomycin for yourself or a loved one, or just want to say hi, I’d love to say hello!
Thank You
Thank you for all you do. I appreciate your support and your emails. I couldn’t do this without you!