Make the Halls of Congress Ring on National PH Call-In Day

This week, PHA’s Advocacy and Awareness Director, Katie Kroner, is our guest blogger. Katie describes an important – and easy – way we can make a real difference in the lives of PH patients (and their families).

PHA staff make calls during
National PH Call-In Day 2014

April 16 is National PH Call-In Day – a day to make the halls of Congress ring with the PH community’s voice. You can take part in less than 10 minutes, without leaving your home.

Why me?
A friend of mine was talking with a staffer in Rep. Chris Van Hollen’s (D-MD) office last week. When she mentioned PH, the staffer jumped in and started to tell the story of a young woman who visited his office almost a year ago and shared her experience of being diagnosed while working in Afghanistan. He told me that he'll never forget the way she described her pain from having pulmonary hypertension: "I could breathe in, but my lungs didn't feel like they were getting any oxygen." He remembered her words a year later and said his boss, Rep. Van Hollen, remembers them too.  He was telling PHer Jessica Armstrong's story.

Everyone whose life has been touched by PH has a story to tell and your story can make a difference. Join PHers across the country on April 16 and make sure that every Member of Congress knows about PH.

How can I help?

PHers Jessica Armstrong (left) and Katie Tobias
advocate to the Food and Drug Administration

On April 16, PHers across the country will call their senators and representatives and ask them to co-sponsor the Patients’ Access to Treatments Act.

The bill aims to limit patients’ out-of-pocket costs for complex, life-saving medications by capping possible co-insurance. For PHers, that means a limit on what your insurance could require you to pay for infused and inhaled PH drugs. The bill is specific to commercial insurance, but its success would likely impact Medicare and Medicaid too.

Learn more and take action.

What Should I Do on April 16?
Follow these steps to add your voice on April 16:

1. Use PHA’s tools to look up phone numbers for your senators and representatives and view a call script. All you need are your street address and zip code: www.PHAssociation.org/ActionAlert/PHNationalCallInDay 
2. Make the calls! Ask your senators and representatives to co-sponsor the Patients’ Access to Treatments Act.
3. Tell PHA … and your friends! Don’t forget to fill out the call feedback form that appears after the talking points. PHA will use this information to help hold your Members of Congress accountable. Then, post the alert to social media or email it to your friends. Anyone can join the “phight” on National PH Call-In Day!
4. Congratulate yourself! Thank you for adding your voice to this critical issue!

For more information, or to join PHA’s grassroots advocacy network, contact Angelia at 301-565-3004 x753 or Advocacy@PHAssociation.org.