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June 27, 2018

UPDATE: PCHETA moves forward

Today HR 1676, the Palliative Care and Hospice Education and Training Act (PCHETA), passed the House Energy and Commerce Subcommittee on Health by voice vote and was reported to the full committee for consideration. This is fantastic news for many reasons, especially because this markup follows the Patient Quality of Life Coalition (PQLC) Lobby Day held on June 20, when National Patient Advocate Foundation joined over 40 organizations to help advance PCHETA and raise awareness about palliative care.

 

Of course, PCHETA is a key federal initiative for NPAF, and efforts to pass the legislation have been well underway for five years. With strong bipartisan support, and the most cosponsors ever — 281 cosponsors in the House and 29 in the Senate — PCHETA has built steady momentum throughout this Congress, and it is well-positioned to keep moving forward.

 

If passed, PCHETA will help address and overcome the access and identity issues of palliative care. PCHETA would expand the palliative care research, training, awareness and career development that is vital for improving access to palliative care for the millions of seriously ill infants, children and adults in the US who need these services to maximize their quality of life.

 

For the PQLC Lobby Day, NPAF invited volunteer advocates Faye Hollowell of Cordova, TN and Becky Barnes of Richmond, KY to meet with their Members — who are key Senate targets — to share their personal stories of how palliative care could have made their patient and caregiving experiences better had it been available. In addition, NPAF invited partners and palliative care champions Dr. Justin Baker, Division Director of Quality of Life and Palliative Care at St. Jude Children’s Research Hospital in Memphis, TN and Dr. James Block, former CEO of Johns Hopkins Hospital and Health System in Baltimore, MD to help amplify the message that palliative care is not only an extra layer of support for patients and families facing serious illness, but palliative care—or person-centered care—principles are lifelines for doctors and hospitals to deliver meaningful quality health care.

 

On behalf of all at NPAF, I’d like to thank all our volunteer advocates who met with their Members at Patient Congress last year and past PQLC Lobby Days, as well as those advocates who wrote or called their Members from home asking that they cosponsor PCHETA. Your stories and advocacy continue to push PCHETA forward. Chairman Walden described PCHETA today as a cause “near and dear to (his) heart.” In his opening statement, he says about PCHETA:

 

“I’ve heard about this bill’s impact from palliative care specialists and disease advocates from Oregon, like Dawn Frazier in Bend, Oregon, whose daughter Rhonda tragically passed away at the age 34 after suffering from early onset Alzheimer’s. I’d like to submit for the record a Bend Bulletin op-ed that Dawn wrote about this bill into the record.”

 

Your stories matter and your Members are listening. Because of patient and caregiver advocates like you, we are one step closer to bringing person-centered care everywhere.

 

Melissa Williams is the Manager of Health Care Policy and Advocacy at the National Patient Advocate Foundation.