This year, it’s ‘hope into action’ for PSC Awareness Day
Advocates note potential treatments, clinical trials
Oct. 29 is Global PSC Awareness Day, and advocates around the world are joining forces to shine a light on primary sclerosing cholangitis (PSC) and push for effective treatments.
Organizations including PSC Support in the U.K., the European Liver Patients’ Association (ELPA) elsewhere in Europe, and PSC Partners Canada in Canada aim to raise awareness of the disorder.
“We’re proud to stand alongside partners across the globe to raise awareness, share knowledge, and amplify the voices of the PSC community,” PSC Support says on its initiative webpage. “By coming together, we show that this is a movement driven by compassion, collaboration, and determination.”
The theme for this year’s awareness day is Turning Hope into Action. The goal is to encourage people with PSC not only to be hopeful about the future, but to take active steps to make the future better for people with the disease.
“Hope isn’t just a feeling, it’s about taking action,” said Paula Hanford, PSC Support’s chief executive. “Being part of this alliance helps us amplify the voices of the PSC community and brings us one step closer to finding the breakthrough people with PSC so desperately need.”
Online auction, prize drawing
PSC is a rare autoimmune disease marked by inflammation in the bile ducts, a series of tubes that carry bile, a digestive fluid, out of the liver and to the intestines. This chronic inflammation can affect bile flow and cause bile to accumulate in the liver and leak into the bloodstream, causing liver damage and cholangitis symptoms like itching.
No treatment has been approved for PSC, but some available medications, used off label, can help lessen symptoms.
For Global PSC Awareness Day, community members are encouraged to follow, share, and engage with advocacy groups on social media to help raise awareness of PSC. Inspiring PSC stories are on the Facebook pages of PSC Support, PSC Partners Canada, and ELPA; a video playlist is also up on YouTube.
Supporters are also invited to donate to PSC Partners Canada’s online auction, which is running from Oct. 25 to Nov. 2, to raise funds for PSC research. About CA$10,000 has been raised so far; the target is CA$30,000.
People living in Canada (except Quebec) can buy tickets for the association’s prize drawing. The winner will receive two round-trip Air Canada tickets for travel in North America — including Hawaii, Mexico, and the Caribbean. Tickets are CA$10 each, and the winner will be known in about a month.
PSC Support is also encouraging people living with PSC to use this awareness day to consider participating in clinical trials testing experimental treatments. The event’s webpage includes an information sheet about clinical trials, as well as resources to help patients find ongoing trials that they may be eligible to participate in.
Of the several experimental treatments for PSC in development, the most advanced include Chemomab Therapeutics’ nebokitug, Ipsen’s elafibranor, and Mirum Pharmaceuticals’ volixibat, all in Phase 2 testing.
New potential candidates are also advancing into clinical testing. Esperion recently nominated ESP-2001 as its investigational PSC treatment, saying it plans to start testing in clinical trials next year.
The therapy, which is in preclinical testing, is designed to block the activity of allosteric ATP citrate lyase (ACLY), a key metabolic enzyme that’s thought to be involved in PSC-related liver and bile duct injury, inflammation, and scarring.
“PSC is a devastating condition with no approved treatments, and our preclinical data suggest ESP-2001 has the potential to meaningfully impact disease progression through multiple mechanisms,” Sheldon Koenig, Esperion’s president and CEO, said in a company press release. “We are proud to advance a candidate that reflects the capabilities of our next generation ACLY inhibitor program and our commitment to addressing areas of high unmet need.”
