ADVOCACY ACTION CENTER

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.

Schedule a meeting with your members of Congress this May

Your members of Congress work for you. Celebrate World Pulmonary Hypertension Day 2024 by moving PH to the top of their legislative agendas. Schedule your virtual advocacy visit this May by completing our form or contact us at 301-565-3004 x758.

Join the Fight to Improve Oxygen Access

Thanks to the pulmonary hypertension community and other patient organizations, a bill to improve oxygen access has been introduced in Congress. Sen. Bill Cassidy (R-La.) introduced the Supplemental Oxygen Access Reform bill Feb. 28, with Sen. Amy Klobuchar (D-Minn.) and Mark Warner (D-Va.) as cosponsors.

Urge your senator to cosponsor the SOAR Act by highlighting its potential impact for oxygen users in the PH community, using PHA’s template message.

Many people with PH rely on supplemental oxygen. However, many often struggle to access the equipment needed to live fulfilling, productive lives due to Medicare’s competitive bidding process. That process discourages oxygen suppliers from providing more costly options, such as those that deliver high volumes of oxygen for a longer time. That often leaves otherwise mobile people home bound and isolated.

The legislation also would improve access to specialist care by requiring insurance to pay for respiratory therapy services and would spell out patient rights related to oxygen.

Keep the Safe Step Act included in PBM Reform

Senate consideration of the Pharmacy Benefits Manager Reform package, which currently includes the Safe Step Act, has been delayed until March. The Safe Step Act protects the ability of individuals with high-risk health conditions, like pulmonary hypertension, to access the specific drug prescribed by their physician by placing reasonable limits on step therapy or “fail-first” requirements. This is the next step for the Senate to pass the Safe Step Act, and it’s crucial the PBM Reform package moves forward with the Safe Step Act in the final bill text.

Use PHA’s template to tell your legislators why the Safe Step Act is important and urge them to pass the PBM Reform package with the Safe Step Act included.

Tell Congress to Pass Supplemental Oxygen Reform

For too long, people who require supplemental oxygen have not had access to the oxygen appropriate for their medical and quality of life needs, especially individuals who require liquid oxygen. For many PH patients, access to portable, accessible, and clinically appropriate treatment has not been available, or has even been revoked by suppliers.

The Pulmonary Hypertension Association urges Congress to pass legislation to ensure anyone who requires supplemental oxygen can access the most appropriate type of oxygen for their needs. Take action today and urge Congress to pass legislation addressing the challenges associated with supplemental oxygen.

Because when you can’t breathe, nothing else matters.

Protect Access to Charitable Assistance

The Help Ensure Lower Patient Copays Act (HELP Copays Act, S. 1375, H.R. 830) protects access to charitable assistance by closing a loophole that insurance companies are using to take more than their fair share of patient copays.

The PH community often relies on charitable assistance to afford copays for expensive PH medications and therapies. Some insurance companies increase their profits by accepting copayments from these third-party sources, without counting those payments towards the patient’s deductible. The means the patient is responsible for the full amount of their deductible once their financial assistance has run out for the year.

Tell your members of Congress to cosponsor the HELP Copays Act and protect our community from this unfair insurance practice.

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.

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