PHA’s Advocacy Action Center provides the tools you need to educate your elected officials about pulmonary hypertension. Check back throughout the year to make your voice heard on legislation and regulation that impacts the PH community.

Sign the Petition to Improve Oxygen Access

The Pulmonary Hypertension Association, along with the American Lung Association and other lung disease partners, is asking Congress to help ensure anyone who needs supplemental oxygen has appropriate access.

Although liquid oxygen offers the highest degree of mobility and highest quality of life for those with high-flow oxygen needs, many oxygen suppliers will no longer provide it. This limits PH patients’ engagement in everyday activities and sometimes leaves them homebound. Additionally, patients lack appropriate recourse when their medical equipment supplier is unresponsive when they experience problems with oxygen equipment.

For the Day of Action during this year’s PH Awareness Month, please sign this community petition, hosted by the American Lung Association, to call for oxygen access reform.

Support the Safe Step Act

When insurance payers require someone with PH to try and fail a less-expensive therapy before getting medication their physician prescribed, the resulting delay can be devastating.

That’s why PHA supports the Safe Step Act, a bill that limits “step-therapy” or “fail-first” requirements and protects everyone’s access to the therapy right for them.

Use PHA’s template to email your members of Congress, and ask them to co-sponsor the Safe Step Act.

Protect patient access to charitable assistance

Congress must act to protect people with PH from copay accumulator policies. The Help Ensure Lower Patient Copays Act (HELP Copays Act, H.R. 5801) requires Affordable Care Act-regulated insurance plans to accept payments from charitable assistance sources and count them toward patients’ deductibles and out-of-pocket maximums. Use PHA’s email template to ask your elected official to cosponsor H.R. 5801 today.

Increase NIH funding for FY2023

Spring is here, and it’s time to ask Congress to increase funding for the National Institutes of Health (NIH) in the federal budget for fiscal year 2023. NIH-funded research makes it possible for PH researchers and scientists to continue their work to improve the understanding of PH, improve and develop new treatments and ultimately find a cure.

Tell your legislators why investment in continued PH research is important to you!

Improve the Supplemental Security Income program

Congress has failed to update the Supplemental Security Income (SSI) program for more than 30 years. As a result, millions of people with disabilities, including PH, live in poverty.

If enacted, the SSI Restoration Act would keep SSI beneficiaries from falling below the poverty line. It would simplify the claims process, expand resources and income limits, set the minimum benefit at 100% of the federal poverty level, and eliminate punitive reductions in benefits.

Ask your legislators to support this legislation with PHA’s email template.

Expand access to out-of-state practitioners

The Temporary Reciprocity to Ensure Access to Treatment (TREAT) Act would eliminate a barrier to care for people with PH. It would allow licensed health care professionals to practice in any state for at least six months after the end of the public health emergency.

Tell your legislators how access to out-of-state medical care improves PH patients’ wellbeing. Use PHA’s email template to ask them to support the TREAT Act.

Tell Congress to protect telehealth coverage

Telemedicine provides people with PH better access to specialists and reduces travel burdens for routine care visits. Congress is considering legislation to make permanent expanded access to telehealth for Medicare beneficiaries beyond the pandemic.

Use PHA’s email template to tell your lawmakers why access to virtual visits with health care providers is important to you and your family. Tell your members of Congress to support the Creating Opportunities Now for Necessary and Effective Care Technologies (CONNECT) for Health Act of 2021 to ensure that telehealth services for Medicare beneficiaries are here to stay.

Stay involved

When you join PHA’s grassroots advocacy network, we send you the resources you need a few times a year to stay in touch with your members of Congress about issues that affect your life. Be heard. Be a PH advocate.

Schedule a meeting with your members of Congress

Your members of Congress work for you. Move PH to the top of their legislative agendas through planned phone calls, video meetings and visits to their offices in your state. Schedule your visit by completing our form or contact us at 301-565-3004 x749.

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