HR0897 103RD GENERAL ASSEMBLY

HR0897 LRB103 42451 MST 75681 r

HOUSE RESOLUTION

WHEREAS, The National Institutes of Health reports that an estimated 50,000 to 100,000 people in the United States have primary biliary cholangitis (PBC), a chronic progressive liver disease in which the bile ducts become inflamed and damaged; and

WHEREAS, PBC is a rare, chronic autoimmune liver condition in which the small ducts in the liver are inflamed and damaged, causing bile and toxins to build up and cause problems, including scarring, cirrhosis (scarring and poor liver function), and eventual liver failure; the disease has no cure; and

WHEREAS, PBC is more common in women, and researchers estimate that in the U.S. approximately 65 out of every 100,000 women have PBC; and

WHEREAS, Many people do not have symptoms when they are first diagnosed and may not develop symptoms for several years; early symptoms may include fatigue or lethargy, which is the most common symptom, itchy skin (pruitus), dry eyes/mouth, and abdominal pain; and

WHEREAS, More people are being diagnosed with PBC, impacting people of varied ages, gender, race and ethnicity; those living with PBC share common symptoms, including debilitating fatigue and incessant itching or skin-crawling sensations that is made worse at night; and

WHEREAS, A GI specialist can screen a patient for primary biliary cholangitis by checking certain indicators in the blood that determine how well the liver is functioning; elevated quantities of the enzyme alkaline phosophatase (ALP) and AMA's (antimitochondrial antibodies) in the blood stream could point to PBC; diagnostic imaging tests could also be conducted to get a closer look at the bile ducts and the liver to screen for signs of scarring; and

WHEREAS, There is no cure for PBC, but treatment can help delay the condition's progression and manage complications; a liver transplant may be required in severe cases; in addition to the most common symptoms of fatigue and itchy skin, other symptoms may include darkening of the skin, small yellow or white bumps under the skin or around the eyes, and bone, muscle, and joint pain; as the disease progresses, symptoms of cirrhosis can develop, including jaundice, swelling of the legs and feet (edema), enlarged abdomen from fluid accumulation (ascites), or internal bleeding in the upper stomach and esophagus from enlarged veins (varices); and

WHEREAS, People living with PBC have been waiting for treatment advancements for many years; the Orphan Drug Act has encouraged and promoted the discovery and development of biopharmaceuticals designed to treat and potentially cure rare diseases; and

WHEREAS, Many of the world's leading academic institutions, academic medical centers, biotech companies, and pharmaceutical companies that are conducting research and seeking cures for rare diseases are doing so in this State; therefore, be it

RESOLVED, BY THE HOUSE OF REPRESENTATIVES OF THE ONE HUNDRED THIRD GENERAL ASSEMBLY OF THE STATE OF ILLINOIS, that we declare September 2024 as PBC Awareness Month and September 8, 2024 as PBC Day in the State of Illinois in order to raise awareness of primary biliary cholangitis (PBC) and provide an opportunity for patient organizations to help connect individuals and families who struggle with PBC, bring attention to the need for research and funding to support the discovery and development of therapies designed to treat and potentially cure PBC, and support the continued work of the Friends of the PBC Foundation; and be it further

RESOLVED, That suitable copies of this resolution be presented to the Illinois Biotechnology Innovation Organization (iBIO), the chairperson of the Illinois Rare Disease Commission, and the Illinois Department of Public Health.