Online Insurance Guide


Welcome to our Online Insurance Guide! Whether you’re a patient, family member or medical professional, you will find tools and materials that allow you to advocate for timely access to affordable treatment.

Use these resources to learn about insurance, troubleshoot insurance problems and connect with other patients who have overcome their own insurance challenges. 

Coverage Connection

Coverage Connection is PHA's monthly e-newsletter providing PH-related insurance updates. Read the latest information below or sign up to receive monthly updates via email.

Spring Into Treatment Access Legislation

PHA is always looking for ways to make long-term improvements to PHers' access to treatments. With that in mind, PHA is active in coalitions advancing several pieces of treatment access legislation.

Spring is a critical time. With the summer recess for Congress rapidly approaching, the PH community is working hard to share their stories and educate their elected officials on the importance of co-sponsoring one of the following bills. Learn more below or take action now.

H.R. 1600 – Patients' Access to Treatments Act

Two Ways to Help Improve Treatment Access:

Take action today by sending an email or scheduling a call or visit.

Join us for National Call-In Day on Thurs., April 14, as PH community members across the country call their senators and representatives to build co-sponsorship of the PH Research and Diagnosis Act.

Contact Angelia DiGuiseppe for more information.
or 301-565-3004 x753.

Many insurance plans place lifesaving PH medications in a specialty tier. This means that instead of having to pay a fixed copay, many PH patients pay a certain percentage of their drug costs, which can translate to thousands of dollars a month. The Patients’ Access to Treatment Act (H.R. 1600) would establish cost-sharing limits for health plans that cover prescription drugs and use a formulary or other tiered cost-sharing structure. If passed, the bill would help eliminate some of the financial barriers that many PH patients face.

H.R. 3742 – Access to Marketplace Insurance Act

Many PH patients benefit from the financial support of the Caring Voice Coalition (CVC) either for help paying their premium (the monthly cost of their insurance coverage) or their copays (the amount they pay when they fill a prescription).

Recently, insurers in some areas have begun to refuse premium payments assistance from “third parties,” including churches, community groups and nonprofits like the CVC. These changes do not affect copayment assistance, and CVC has been working closely with impacted individuals.

Now there is a way we all can help. The Access to Marketplace Insurance Act (H.R. 3742) asks Members of Congress to make a small legislative change to require that insurers accept payments from organizations like CVC.

H.R. 3520 – Pulmonary Hypertension Research and Diagnosis Act

While there are 14 FDA-approved treatments for pulmonary hypertension, more can be done so that people living with PH can live longer, better lives. That’s the goal of the PH Research and Diagnosis Act (H.R. 3520).

The PH bill would bring together representatives of several federal agencies to work together to advance the full spectrum of PH research from basic science to clinical trials, increase early and accurate PH diagnosis and educate healthcare professionals and the public.

Have insurance questions? Contact or (301) 565-3004 x773.



DISCLAIMER: The Insurance Resources section includes brief summaries of complex subjects. They should be used only as overviews and general guidelines. The views expressed herein do not necessarily reflect the policies or legal positions of the Pulmonary Hypertension Association. These summaries do not render any legal, accounting, or other professional advice, nor are they intended to explain fully all of the provisions or exclusions of the relevant laws, regulations, and rulings of various private and public insurance programs. Original sources of authority should be researched and utilized.
Contact us with insurance questions, success stories or suggestions.
PHA is proud to be able to make educational materials and programs like these available for free to everyone because of the generous support from members of the community just like you. Donations are welcome!

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The information provided on the PHA website is provided for general information only. It is not intended as legal, medical or other professional advice, and should not be relied upon as a substitute for consultations with qualified professionals who are familiar with your individual needs. PHA does not endorse or recommend any commercial products or services.

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The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.