The Pulmonary Hypertension Association is bringing the concerns of the PH community to Congress. On June 5, PHA will host a legislative briefing for lawmakers and their legislative staff. The briefing will address treatment access barriers for people with pulmonary hypertension.
PHA needs your help to ensure the briefing is well attended. Urge your elected officials to educate themselves about this rare disease and how they can improve quality of life for people with PH. Use PHA’s pre-written template to easily invite your legislators.
Panelists will include two people with PH and a nurse practitioner. They are: Colleen Conner, a PHA board member and long-time volunteer; Stephen Carter-Hicks, performer and PHA volunteer; and Heather Mayberry, pulmonary hypertension clinical coordinator at Centra Lynchburg General Hospital.
In addition to sharing their personal experiences and answering questions about treatment-access challenges, they will ask for congressional support for PHA legislative priorities, such as the Supplemental Oxygen Access Reform Act. The SOAR Act proposes to make supplemental oxygen insurance coverage more flexible for Medicare beneficiaries. The proposed changes would make it easier for people to access the form of oxygen best for them.
Supplemental oxygen is a treatment for people whose blood oxygen saturation levels are too low. Many people living with pulmonary hypertension can’t access the type, quantity or flow rate of supplemental oxygen their prescribing clinician recommends. The SOAR Act would increase flexibility for Medicare coverage of oxygen and related equipment. If passed, the legislation would allow people with pulmonary hypertension to more easily access the right type of oxygen treatment to improve their quality of life.
Other priority bills include the Safe Step Act and Help Ensure Lower Patient Copays Act. These bills address insurance policies that pose barriers to prompt and affordable treatment. The Safe Step Act would create reasonable exceptions for step therapy, a practice that requires patients to first try less expensive and often less effective treatments before covering the treatments their physicians prescribed.
The HELP Copays Act addresses a loophole some health insurance companies use to “double dip” on copays through copay accumulator programs. Insurance plans with accumulators accept payments from copay cards or other financial assistance sources but don’t apply those payments toward deductibles. People subject to accumulator policies are responsible for their full deductibles after their financial assistance runs out. The HELP Copays Act would close this loophole so insurance companies will have to pay their fair share.
Visit PHA’s Advocacy Action Center to contact your legislators and encourage them to attend PHA’s legislative briefing.
