The Pulmonary Hypertension Association helps shape laws that affect the PH community in many ways.  

You probably are familiar with our work on Capitol Hill, where we advocate our position with members in Congress. Sometimes, our advocacy takes place before a bill becomes law, and sometimes we work to change laws already in place. Those advocacy efforts include visits and calls to members of Congress – by PHA leaders and staff, as well as patients, families and healthcare professionals.

In addition to our legislative efforts, PHA also works to shape federal regulations and how government agencies implement them.

Many proposed federal regulations allow people and organizations to share their opinions during a public comment period. Federal agencies, such as the Health and Human Services or Transportation departments, are supposed to consider the comments when finalizing the proposal.

PHA uses these public comment periods to share your stories and suggest ways to improve proposed regulations to better meet the needs of people with PH. In the past three months, PHA has submitted comments on:

Prior authorization. PHA commented in support of a proposal to streamline the prior authorization process, noting specific improvements that would benefit the PH community.

Step therapy. PHA responded to a federal request for information about how step therapy can be streamlined through technology. We will use this opportunity to reinforce key elements of the Safe Step Act and highlight how technology can support uninterrupted access to therapy. 

Medicaid work requirements. PHA, along with many partner organizations, strongly encouraged states to consider the needs and limitations of people with chronic illnesses and disabilities when implementing work requirements.

Medical research. PHA joined more than 490,000 organizations and individuals in commenting on a proposal that would affect how the government awards federal grants, including those that fund medical research. PHA opposed the funding proposal because it would:

• Increase the power of political appointees in funding decisions while decreasing the role of scientific peer review.
• Give federal agencies the ability to cancel grants on short notice for almost any reason.
• Limit scientific collaboration with other countries, which often is essential to effectively study rare diseases.
• Restrict the inclusion of underserved populations in research in ways that could undermine the value of that research for everyone, including women, people of color and residents of rural communities.