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August 2024 – Stop Pulmonary Hypertension | StopPH.org

News


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Illustration of a striking gavel.

Liquidia is suing the U.S. Food and Drug Administration (FDA) to challenge a decision that delays the final approval of Yutrepia, its inhaled dry-powder formulation of treprostinil, arguing that the delay unfairly limits patient access to important treatment.

Yutrepia was granted tentative approval in 2021 to improve the ability to exercise in adults with pulmonary arterial hypertension (PAH), an indication extended earlier this month to pulmonary hypertension associated with interstitial lung disease (PH-ILD). read more


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A column banner depicts colorful flowers against a pink background, with the words "Blooming Hope" in large print

In 2002, three years after my pulmonary hypertension (PH) diagnosis, my family and I made our way to the Pulmonary Hypertension Association’s (PHA) International PH Conference. I have no memories of this gathering, which was the first we’d attended, but it soon became a treasured part of my health journey.

The PHA’s biennial conference — held this month in Indianapolis — offers a place for patients, caregivers, and healthcare providers to come together and connect. While cities across the U.S. have hosted, it draws people from around the world. Because PH is such a rare illness, the need for an intentional gathering is clear. During my 19-year journey with the disease, we attended conferences in Florida, Texas, and more. read more


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Illustration of hands showing thumbs-up sign.

Winrevair (sotatercept-csrk), Merck’s injection therapy for adults with pulmonary arterial hypertension (PAH), has been approved in the European Union, as well as in Iceland, Liechtenstein, and Norway.

The approval from the European Commission specifically covers Winrevair when used in combination with other PAH therapies to improve exercise capacity in PAH patients with World Health Organization (WHO) functional class 2 or 3.

The decision follows a positive opinion recently issued by the Committee for Medicinal Products for Human Use, an arm of the European Medicines Agency, which recommended the use of Winrevair for this indication. Winrevair was also recently approved by the U.S. Food and Drug Administration for PAH. read more


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Banner image for "Worth the PHight," a column by Jen Cueva. The graphic illustration depicts a woman with short brown hair and oxygen sitting on the beach and looking out toward the ocean.

Traveling with a rare disease such as pulmonary hypertension (PH) isn’t just about booking flights and hotels; it’s an adventure full of challenges!

Once the plans are set, the actual logistics begin. Ensuring that I have all my treatments, preparing for possible emergencies, and navigating the complexities of travel can seem daunting. Even under ideal conditions, traveling can be tricky, but for those like me who are managing a disability, the security checks can be downright stressful. read more


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banner image for "Phighting Words," a column by Mike Naple, depicting bookshelves filled with books on one side and the Washington Monument on the other

The pain caused my right knee to seize with every step. As I moved through the Indianapolis hotel room that morning, the day’s busy schedule simmering in the back of my mind, I knew I had to listen to my body and change my plans, so I ordered a car share and headed to a nearby urgent care.

I had arrived in the Hoosier state the previous night to attend the Pulmonary Hypertension Association’s conference, a biennial gathering that brings together patients, caregivers, medical providers, researchers, drug manufacturers, and advocates across the broad pulmonary hypertension (PH) community. I was excited to spend a few days reuniting with friends, learning about the latest treatment developments, and educating myself even more about this disease that affects the heart and lungs. read more


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More than a dozen balloons, one of them red, are seen floating in the air.

Airplane travel appears to be safe for people with pulmonary hypertension (PH) with both slight and marked limitations of physical activity, though some individuals may need oxygen support on board to help with breathing, according to a new study.

While some patients in the study, dubbed PEGASUS (NCT03051763), experienced mild discomfort during or after their flights, nearly all who flew were willing to do so again, suggesting air travel can be manageable with proper precautions.

“Our study gives evidence that air travel is safe in patients with PH,” the researchers wrote, noting that “no severe adverse events occurred during and after … flight.” read more


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GIVE CHILDREN A PHIGHTING CHANCE