News

Ten members of the pulmonary hypertension (PH) community were honored by the Pulmonary Hypertension Association (PHA) for their dedication and service.

The Outstanding Member Awards ceremony took place Aug. 17 at the PHA 2024 International PH Conference and Scientific Sessions in Indianapolis. The awards honor people who’ve shown exceptional dedication and service to the PH community through volunteering in patient and caregiver support, philanthropy, promoting quality patient care, advocacy, and advancing research. read more

Health Canada has approved Merck’s Winrevair (sotatercept-csrk) for adults with pulmonary arterial hypertension (PAH).

The approval specifically covers the use of Winrevair in combination with standard therapies to treat patients with World Health Organization (WHO) functional classification 2 or 3. The decision follows approvals in the U.S., as well as the European Union, Iceland, Liechtenstein, and Norway.

“We understand the burden that PAH places on patients and caregivers. The approval of Winrevair represents a step forward for those grappling with this disease,” David D. Jones, managing director of Merck Canada, said in a company press release. “Our commitment to advancing scientific research and developing solutions stands firm to address the unmet needs of Canadians.” Merck is known as MSD outside the U.S. and Canada. read more

Fear and anxiety are often among the first emotions we experience after being diagnosed with pulmonary hypertension (PH) or other rare and complex diseases.

Recently, my therapist asked me, “Did you know that naming your fears is the first step in preventing them from controlling your mind?”

Despite having heard and discussed this idea before, particularly during my nursing days when I cared for others, now it’s my turn to listen. Supporting others has always felt more natural to me than receiving support. Even though I was diagnosed with PH nearly two decades ago, I still struggle to accept help, especially on my tougher days. read more

The European Commission has granted orphan medicinal product designation to Cereno Scientific’s CS1 for the treatment of people with pulmonary arterial hypertension (PAH).

This designation is given to medications for life-threatening or chronically debilitating diseases, affecting up to five per 10,000 individuals in the European Union (EU), or treatments whose marketing likely does not generate sufficient returns to justify the investment in development. The designation comes with certain incentives, including scientific advice and 10 years of market exclusivity if the medication is ultimately approved. read more

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

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

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

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

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

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