Join Us in Celebrating World PH Day

Dear friends,

Please join PHA in observing World Pulmonary Hypertension Day on May 5. World PH Day is a global effort to raise PH awareness. Led by our partner PHA Europe, this year’s campaign “Sometimes It’s Pulmonary Hypertension,” draws attention to the challenges of getting an accurate diagnosis.

The global campaign brings together people around the world to shed light on the frustrating, frightening journey patients experience before finally hearing “It’s PH.”

Here are some ways the Pulmonary Hypertension Association is observing World PH Day:

PHA’s 6-Minute Challenge. Throughout May, join us for our new virtual 6-Minute Challenge. Commit to six minutes of daily activity, such as walking, chair yoga or pickleball. PHA’s 6-Minute Challenge is open to everyone in the PH community, including all abilities and fitness levels.

We recognize that six minutes of activity can be challenging for some, which is why participants can choose any activity that works for them. We celebrate all participants’ efforts and contributions, and we’ll recognize top participants in a May 31 Facebook Live celebration. Learn more and sign up for the 6-Minute Challenge.

World PH Day Hill Day. In the US, the PHA community will share their stories with members of Congress in person on May 6 and online May 7. Thank you to everyone who signed up to advocate for policies to improve the lives of those affected by PH.

If you’re not participating in those meetings, you can still advocate for PH-friendly policies. Contact your members of Congress and urge them to support the Supplemental Oxygen Access Reform and Help Ensure Lower Patient Copays acts, which recently were reintroduced in Congress.

Nationwide support groups. PHA’s virtual Patient and Caregiver support groups are hosting nationwide meetings focused on mental health. Whether you’re newly diagnosed or have managed PH for years, you can connect with others who understand life with PH.

Join from anywhere via Zoom. RSVP to receive a meeting link: Caregiver Support Group: May 21 at 7 p.m. ET, Patient Support Group: May 22 at 8 p.m. ET.

Share World PH Day graphics on our social media platforms: Facebook, Instagram, LinkedIn and Bluesky. Don’t forget to tag #WorldPHDay2025 and PHA in your posts. You can download graphics from the World PH Day Toolkit to change your social media profile images and cover photos.

Seeking better care access

In addition to raising awareness for World PH Day, PHA works year-round to improve care access and services for people affected by PH. So far this year, we’ve been working to bring treatment access issues to lawmakers, insurance companies and others.

As part of that effort, we’re working to reintroduce the Safe Step Act and gain additional congressional sponsors for the HELP Copay and SOAR acts.

The Safe Step Act seeks to limit step-therapy requirements by insurance companies. Step therapy requires people to try less expensive treatments than those their doctors prescribe. The insurance companies authorize the prescribed treatment only after the less expensive treatment fails.

The SOAR Act would make Medicare coverage of supplemental oxygen more flexible by removing it from the competitive bidding process, among other reforms. The HELP Copays Act would ensure payments made on behalf of patients by third parties such as financial assistance foundations count toward patient deductibles or out-of-pocket maximums.

We’re also continuing our advocacy efforts with insurance companies and the regulatory bodies that govern them until patients with all form of PH can get prompt access to the therapies that are right for them.

Although some insurance companies excluded PH drugs from their covered drug lists this year, we haven’t heard from any patients who ultimately couldn’t get coverage. Instead, we heard about health care professionals who worked tirelessly, sometimes for months, to make sure their patients got the medication they needed.

As National Volunteer Week wraps up Saturday, we thank everyone in the PHA community for helping us fulfill our mission by leading support groups, advocating, volunteering and fundraising. We’re particularly grateful for the expertise of our PH health care professionals – during insurance welcome season and all year round – to help us help their patients.

Whether you’re a patient, caregiver or health care professional, please don’t hesitate to reach out if you have comments or questions. As always, I look forward to hearing from you.

With gratitude and respect,