A survey of 200 people in the United States living with pulmonary arterial hypertension (PAH) found that 85% had never discussed palliative care with their healthcare provider, even though nearly nine in 10 said they would feel comfortable doing so. Many participants mistakenly thought palliative care was only for end-of-life care, highlighting the need for better conversations so people understand how it can help manage symptoms and improve quality of life throughout their i

This study found that endoplasmic reticulum stress in lung blood vessels may contribute to pulmonary arterial hypertension (PAH) by triggering pyroptosis and damaging blood vessels. In rats, blocking this process reduced blood vessel damage and slowed the development of PAH. Read the Journal of the American Heart Association article

Back in March, we noted that Gossamer Bio’s phase 3 clinical trial of seralutinib (a drug for pulmonary arterial hypertension and pulmonary hypertension associated with interstitial lung disease) didn’t meet its primary endpoint, causing a steep drop in its stock price. The study had some promising results: it showed a potentially good response to seralutinib, but some locations had an unusually good response to the placebo, which may have affected the analysis. Despite the s

Patients with pulmonary arterial hypertension who took ralinepag in addition to their usual treatment were less likely to have their disease get worse than those who took a placebo. However, more people stopped taking ralinepag because of side effects. Read the Lancet article

Functional disability, but not chronic disease category or chronic pain, was independently associated with lower social support. Social isolation among Canadian adults is more closely associated with functional limitations than with diagnostic labels, underscoring the importance of function-focused approaches in research and intervention. Read the Health Promotion and Chronic Disease Prevention Journal article

Only 29% of physicians can share patient information outside their practice. Less than half (47%) of Canadians have accessed their own electronic health records. This disconnect has real consequences: duplicated tests, delayed diagnoses, and prescriptions without a full picture. Bill S-5 can help fix this: It prohibits practices that lock patient information in systems that can’t communicate with each other. It requires common standards for health information sharing. This le

July 24 is International Self-Care Day There is a lot of information out there about the importance of self-care. Self-care is a buzzword that often gets thrown out and there are a lot of misconceptions about what it is and what it isn’t. As the Canadian Mental Health Association outlines, self-care is the act of caring for ourselves to enhance our well-being. Often what comes to mind when we think of this is spa days, or meditation, or going for a massage. While these can al

When I was diagnosed with Pulmonary Hypertension in December 2018, I was too sick to try any other medicine than the IV pump. And though it saved my life and gifted me with a few more precious years, I can’t help but think about the circumstances that allowed for that solution to be sustainable, at least for a little while. I lived with someone. I had family close by. I had dexterity in my limbs and the mental function to handle the logistics of everything that came with the

Researchers looked at smartphone data from 109 participants in the UK. Software was trained to distinguish idiopathic pulmonary hypertension (IPAH) and did so correctly at least 75% of the time. This suggests metrics from wearable tech can complement traditional risk assessment and may support earlier PAH detection. Read the NPJ Cardiovascular Health article

If you’re in central Canada, chances are you’re feeling the heat, as cities hit all-time record high temperatures. The Heart and Stroke Foundation reminds people with heart conditions, such as Type 2 PH, and those taking diuretics or calcium channel blockers, that heat can be particularly dangerous for them. The job of diuretics, of course, is to get rid of fluid, so in extreme heat, this may lead to dehydration. And because they relax arteries, calcium channel blockers may l

This press release reports that over the 12 months of their Expanded Access Program enrolling ten patients, the majority of patients with pulmonary arterial hypertension who completed treatment with drug candidate CS1 maintained or improved their functional and biomarker status, and that CS1 showed a favourable safety and tolerability profile. A Phase IIb trial for CS1 begins this summer. Read the Cereno Scientific press release

July is Disability Pride Month The current design of the Disability Pride flag (shown as this post's image) dates from 2021, and each element has a meaning: All six flag colors: Disability spans borders between nations Black background: Mourning for victims of ableist violence and abuse Diagonal Band: Cutting across the walls and barriers that separate disabled people from society Red Stripe: Physical disabilities Gold Stripe: Neurodivergence White Stripe: Invisible and undia

Clinical trials for sotatercept didn't include children, so any pediatric use is off-label. This study, conducted at one children's hospital in San Diego, evaluated sotatercept in 7 pediatric patients with pulmonary arterial hypertension who were already on triple therapy. A majority of patients had favourable hemodynamics trends, supporting the need for official pediatric studies. Read the Pediatric Cardiology article

PHA Canada was delighted to note Dr. Stephen Archer’s name in a list of Order of Canada appointees. He was appointed a Member of the Order of Canada on June 26. As the Governor General’s website says, “Stephen Archer is an internationally acclaimed cardiologist. His seminal discoveries in pulmonary arterial hypertension and its underlying mechanisms have led to novel therapies and improved patient care. He has influenced important health care initiatives, including the creati

On June 29, along with our partner organization Scleroderma Canada and many others, we mark World Scleroderma Day. Scleroderma is a progressive autoimmune disorder that causes skin and internal organs to harden and thicken. It can cause scarring in the lungs and in the arteries of the lungs, affecting oxygen absorption. Each year about 1% of people with scleroderma develop pulmonary arterial hypertension, so there are many people with both scleroderma and pulmonary hypertensi

A 9-participant phase 1 clinical trial used a patch to deliver a prodrug of treprostinil (a prodrug is something that is metabolized into the drug in question inside the body). Each participant wore a patch for 24 hours. The researchers found that treprostinil levels were steady, that different patch sizes could probably be used to deliver different doses, and that it was generally safe and well-tolerated. The company plans to continue clinical development. Read the press rel

In a study of a relatively low-risk population of pulmonary hypertension patients, researchers began to untangle sotatercept's complex effects on exercise. Sotatercept lowered blood volume to normal levels and increased hemoglobin, allowing greater oxygen delivery during exercise. As well, muscles seemed to be able to extract more oxygen. At rest, people's bodies maintained oxygen delivery levels as the blood volume decreased, and the heart seemed to work less hard. Cardiac o

Talking about end-of-life decisions is never easy, but it’s an important conversation many in our community grapple with. A decade ago, Canada legalized medical assistance in dying (MAID). Since then, MAID has transformed end-of-life choice and care for thousands of people across the country. To mark this important milestone, our friends at Dying With Dignity Canada have released a new report examining public attitudes toward MAID. In the spring, PHA Canada invited Dying W

Researchers looked at the medical records of 455 people with pulmonary arterial hypertension (PAH) to find factors associated with getting worse. Using a machine-learning computer model, they found 11 clinical features linked to a higher chance of a worsening event, but only body mass index and red cell distribution width were statistically significantly associated with clinical worsening. About half of the patients experienced a worsening event during the study, usually with

This study from one clinic examined how well sotatercept worked in real-world patients with pulmonary arterial hypertension (PAH) who also had other heart or lung conditions, such as coronary artery disease, high blood pressure, lung scarring, or COPD. After six months of treatment, patients generally needed less oxygen, walked farther in six-minute walk tests, and showed improvements in their overall risk scores. Most side effects, such as nosebleeds or increased red blood c