The Colorado legislative session ended yesterday, and while not every bill crossed the finish line, Lupus Colorado made meaningful progress in advancing patient-centered policy and elevating the voices of people living with lupus and other chronic illnesses.

This year, lupus was mentioned twice on the Senate floor during debate. That is a big deal. For a disease that is often misunderstood, underdiagnosed, and underrepresented in policy conversations, hearing lupus named at the microphone matters. It means lawmakers are beginning to understand that these issues are not abstract. They affect real patients, real families, and real access to care.

One of our top priorities this session was SB26-140, the Rare Disease Prescription Drug Affordability Board Carve-out bill. It passed the Senate, which was a major step forward. It created an important opportunity to explain why Colorado’s Prescription Drug Affordability Board process does not work well for rare disease communities and why additional protections are needed before upper payment limits are applied to medications used by small, medically complex patient populations.

Unfortunately, SB26-140 did not advance out of the House Health Committee. Our House sponsor, Chair Lindsay Gilchrist, held a hearing on the bill but ultimately laid it over after negotiations with the Division of Insurance broke down. The proposed amendments would have gutted the intent of the bill and created real risk for patients.

While we are disappointed by the outcome, this bill moved the conversation forward in a significant way. Patients, providers, infusion centers, and advocates helped lawmakers better understand that affordability policy must not come at the expense of access. We made clear that patients do not benefit from theoretical savings if they lose access to the medications their doctors prescribe.

We were also proud to help stop Representative DeGraaf’s Alternative Funding Program bill, which would have created serious barriers for anyone on a specialty medication like Benylsta or Saphenelo. Lupus Colorado worked with partners to raise alarms about the bill and its potential impact. The bill did not move forward, and that was an important win for patient-centered advocacy.

There was also encouraging progress this session. HB26-1019, the Kidney Screening Bill, passed both chambers and is now awaiting a signature from Governor Polis, This bill is especially important for the lupus community because lupus can cause serious kidney involvement, including lupus nephritis. Earlier screening can lead to earlier diagnosis, faster treatment, and better outcomes. We are proud to have worked with Rep. Sheila Leider, one of last year’s Lupus Colorado Legislative Champions. Her leadership, passion and advocacy for people living with Lupus is unparallelled.

This session showed what is possible when patients speak up and when lawmakers are willing to listen. We built stronger relationships, educated more legislators, and made sure the lived experiences of people with lupus were part of the policy conversation.

To every patient, caregiver, provider, partner, and supporter who helped this session: thank you. Your voice helped move this work forward, and we are heading into the next session stronger, clearer, and more determined than ever.