State-regulated health insurance plans in Connecticut must count copay cards and other financial assistance toward deductibles and out-of-pocket maximums, thanks to pulmonary hypertension (PH) and rare disease advocates.

In June, Gov. Ned Lamont (D) signed a law that prohibits copay accumulators. The law, passed with bipartisan support in the Connecticut General Assembly, is a major improvement in health care access for Connecticut residents with PH and other complex, costly health conditions.

The victory is the result of lobbying by the Pulmonary Hypertension Association (PHA), the PH community and the rare disease community. PHA Board of Trustees Chair Colleen Brunetti and other rare disease advocates have shared their stories in legislative hearings and educated lawmakers about the issue for more than six years.

“The stories of people with rare diseases who live the reality of our health care system’s shortcomings hold a lot of power,” Colleen says. “Building relationships with your representatives and sharing your story can affect real change. It takes patience and persistence, but it is worth it.”

Share your story to make a difference. Visit PHA’s Advocacy Action Center to write to your members of Congress about federal legislation, such as expanding access to out-of-state practitioners during the pandemic; permanently extending Medicare coverage of telemedicine; and limiting step-therapy requirements.

Email us to join PHA’s grassroots advocacy network and receive monthly advocacy updates.

Health care professionals: Your stories matter, too. Make a difference by participating in Advocacy Day Sept. 30 at PHA’s PH Professional Network Symposium.