PHA support group leader volunteers take on many roles in the pulmonary hypertension (PH) community. Many are living with PH — others are caregivers or health care professionals — in addition to being constituents, advocates, friends, mentors and champions of the PH community. Support group leader Stephanie Bachelder recently reached out as a PH advocate to Congressman Jim McGovern of the U.S. House of Representatives. Rep. McGovern represents Massachusetts’ 2nd congressional district and is a co-sponsor of two key legislative priorities for the Pulmonary Hypertension Association — the Patients’ Access to Treatments Act and the Access to Marketplace Insurance Act. She shared this update with her support group.
My meeting with Congressman James McGovern went fantastic!! I was wearing my “constituent” hat, my “PHA support group leader” hat and my “advocate” hat…
AND Wouldn’t you know it? Timing is everything! My Right Heart campaign T-Shirt arrived the day before my meeting so I took the opportunity to have my photo taken with the Congressman and was able to tie in the Right Heart campaign to all the ‘early diagnosis & treatment’ parts of our discussion!
Congressman McGovern has already co-sponsored two of the current proposed legislation around Pulmonary Hypertension:
- H.R. 2999 Patient Access to Treatment Act ( In short, this would limit co-pays/co-insurance to a set amount that would be more affordable to patients)
- H.R. 3976 Access to Marketplace Insurance Act ( This would protect your ability to use charitable premium and co-pay assistance from not-for-profit organizations like Caring Voice Coalition, Good Days, Patient Advocate Foundation, etc.)
He also agreed to co-sponsor H.R. 2077 Restoring the Patient Voice Act (This would place limitations on payers’ use of “step therapy” or “fail-first” requirements to shift a person with PH from one therapy to another without the agreement of a physician. It would protect our ability to access the specific drug prescribed by a physician).
Lastly, the Congressman is willing to write or sign on to proposed legislation requesting for $500,000 funding for the CDC to include PH programming. Considering the availability of effective therapies for early-stage PH, a CDC program focusing on education, awareness, and epidemiology activities that promote early and accurate diagnosis of PH would not only save countless lives but save the U.S. healthcare system from spending on avoidable medical outcomes.
Interested in attending or leading a PHA support group? Learn more at https://phassociation.org/support/
