Latest News from State Capitol and 55th District

June 25, 2026

Rare Disease Legislation Clears House Committee

As a parent, you weigh every danger, every risk. But in your best effort to raise a healthy and happy child, imagine this: You’re the parent of a 13-year-old middle school student. Her name is Jan. She’s energetic, friendly and performs well in school.

Almost overnight, Jan’s behaviors shift. She is quick to become agitated, particularly when her regular routines are broken. Suddenly, she is consumed with keeping her room clean and is overly consumed with every item being in perfect order. You never officially count, but you suspect she washes her hands 50 times a day.

One day, inexplicably, Jan faints. A doctor explains that she is suffering from an eating disorder and is failing to consume enough calories.

But after two years of treatment, a social media post about a health condition captures your attention. It describes identical symptoms to Jan’s and mentions a condition called “PANS” or “PANDAS.” Your internet search produces these unfamiliar words – Pediatric Acute-onset Neuropsychiatric Syndrome and Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal infections.

Jan’s story led to my introduction of House Resolution 528.

Across the United States, 1 in 200 parents experience a similar story. In Pennsylvania, that amounts to more than 13,000 families. While the symptoms appear to be psychological or emotional, PANS and PANDAS are actually triggered by an infection, such as influenza or strep throat. In its fight, the body mistakenly targets parts of the brain, resulting in sudden neuropsychiatric symptoms.

As Jan’s parent, you move past primary physicians and take her to a specialist in another state who agrees she has PANDAS. You should be happy that it seems a fight is over because with a diagnosis, your daughter’s treatment will soon begin. But the fight is far from over.

Currently, the best-known treatment is intravenous immunoglobulin, or IVIG. Because only some doctors take seriously a PANS or PANDAS diagnosis, you find there is even less recognition of the condition by insurance companies. While Jan’s condition slowly improves, you find yourself with more than $100,000 in medical debt. 

Wanting to help Jan’s family in Harrisburg, I learned early in my research that all we know is that we don’t know enough.

House Resolution 528 begins by directing the Joint State Government Commission to conduct a comprehensive study of insurance practices, available state resources, provider capacity, misdiagnosis impacts, other states’ policies and recommendations to improve access, education and support for families dealing with PANS and PANDAS. The commission is a nonpartisan, bicameral research agency that serves the Pennsylvania General Assembly. The resolution was passed by the House Health Committee earlier this month and is eligible for consideration by the full House.

Now 19 years old, Jan has graduated from high school and has begun her college career. Still needing IVIG treatments to keep her symptoms at bay, her parents are continuing to accrue debt but continue to plead their case to insurance appeals boards. 

For more information, visit www.pandasnetwork.org.

Here are some additional news topics and reminders I would like to share.

Celebrating PA Dairy - June is Dairy Month in Pennsylvania, the perfect time to enjoy an extra dish of ice cream or yogurt, another piece of cheese, or a tall glass of milk!

The dairy industry is a major part of our state’s agriculture economy, providing economic value to the tune of $14.7 billion annually and over 52,000 jobs.

If you’d like to support Pennsylvania dairy, be sure to check the milk you purchase at the grocery store and look for the PA Preferred logo or milk with a plant code beginning with “42.” Plant codes are usually printed near the top of the container or on the lid, or sometimes they’re printed right on the label. The first, and most important, part of the code will always be two numbers (between 01 and 56). This identifies the state where the milk was processed. Pennsylvania’s magic number is 42!

Learn more about the state’s dairy industry by visiting choosepadairy.com. 

Fish for Free on Independence Day! - Next Saturday, July 4, the Pennsylvania Fish and Boat Commission (PFBC) will host a Fish for Free day to allow anyone (resident or non-resident) to legally fish on all Pennsylvania waterways. No license is required, but all other fishing regulations apply. This is a great way to expose the next generation of anglers to the outdoors! More information about fishing in Pennsylvania is available at fishandboat.com.



Representative Jill Cooper
55th Legislative District
Pennsylvania House of Representatives
Media Contact: Jordan Frei
724.875.8450
jfrei@pahousegop.com