“I have Hemophilia medication to treat me. It’s three million dollars a year. I want to live. I have a wife, two kids, responsibility. Without that medication, I’m dead. It shouldn’t matter where the money comes from. Thankfully these charitable organizations have been set up to help people. Do I want to go on Disability? No. Will I go on Disability if that’s what it takes to stay alive? Yes.” –Chris Templin, Hemophilia Patient Advocate

On May 1st, Chris, along with 39 other rare disease advocates representing 19 states and Puerto Rico, visited Washington D.C. to meet with our nation’s leaders to advocate for protecting premium & cost-sharing assistance for individuals who need it most. The result was 110 meetings over the course of a very full and promising day.

Advocacy Day Is Vital

Advocacy Days are vital for ensuring the message is heard. Alex DelPizzo of Thorn Run (Proposed Changes to Medicare Part D Panel) states that members of Congress have become too desensitized to the quality and value of patient life. Advocacy Day provides advocates from across the country a tangible opportunity to gather in one accord, and with one voice, to swarm our capitol with a unified message.  

For many, the message was clear. Anthony Castaldo of United for Charitable Assistance and President and CEO of the US Hereditary Angioedema Association shared that patient assistance is an essential part of their safety net and that charitable cost-sharing assistance saves lives.

Let Charities Be Charitable Goes Viral

Thanks to the power of social media, Advocacy Day wasn’t just about what happened in the offices of our nation’s leaders as advocates went from meeting to meeting. Thousands upon thousands of others were also advocating from their own mobile devices sharing their story as well as sharing ours and others as we posted updates throughout the day.

Long after Advocacy Day comes to an end, social media is an effective way to build off of the successes had in our nation’s capital on May 1st. In using the hashtag #LetCharitiesBeCharitable, you can use social media to tell your story, while also tagging your state’s representative. You can visit PSI on Twitter and scroll through our updates from Advocacy Day and retweet or even add your story.

Do you have a story?

Telling YOUR Story Matters

“I always say to patient advocates: ‘tell your story. That’s your job here today.’” –Kelly Fitzgerald, The Alliance Group (Copay Accumulator Panel).

With Advocacy Day over, the work remains. And now, more than ever, we need your help in together sending a message. Will you share your story? Will you write a letter to your congressional leaders? Learn more today about how you can advocate here.

At PSI, we would love to share your story. Whether it’s featured in our new Rare Perspectives podcast or our Patient Blog, your story matters, and we believe the world needs to hear it.

Who Is PSI?

Patient Services inc., is a national non-profit dedicated to providing financial assistance to & advocating for chronically-ill patients with unaffordable medical expenses. You can learn more about us at www.patientservicesinc.org.

View more Advocacy Day Photos here and on PSI’s Facebook page!