Sotatercept Is Not Just Another Medication

My name is Cindy Hayman, and I have been living with Pulmonary Arterial Hypertension (PAH) for the past seven years. I am classified as a Class 1 Pulmonary Hypertension patient due to my underlying connective tissue disease—Systemic Lupus Erythematosus (SLE).

My current treatment includes Macitentan (Opsumit), Sildenafil (20 mg, three times daily), and Furosemide (80 mg daily). These medications have helped me manage my breathing and reduce symptoms of Congestive Heart Failure, for which I am genuinely grateful. But even with these treatments, I struggle daily with what many people take for granted—basic physical activity.

Simple tasks such as walking up a flight of stairs, vacuuming, gardening, or going on a short hike feel overwhelming. The sensation is not just breathlessness—it is suffocating. When I reach the top of a staircase or an incline, it feels as if someone has clamped off my air supply. These moments aren’t just exhausting; they are frightening.

I have sustained right heart damage from my condition and live with the ongoing burden of congestive heart failure and a Cardio arrhythmia problem that is headed towards me having to get a Cardio Abrasion Pacemaker. Even catching a common cold can be life-threatening. I recently battled a severe episode of double pneumonia that lasted five weeks and caused a decline in my health. A cold isn’t just a cold for someone with pulmonary hypertension—it’s a prison sentence.

Living with PH often means sitting on the sidelines of life. I’ve said to my friends and family: “If I ever had to run for my life, I couldn’t.” I make light of it, saying I’d be the one to get caught in a survival situation because I’m the slowest. But that humour masks a very real truth: this disease robs you of your independence and dignity.

And yet, I consider myself one of the lucky ones. There are PH patients who require even more intensive therapies, invasive treatments, or round-the-clock support just to survive. But now, there is hope—a drug called Sotatercept.

Sotatercept is not just another medication to manage symptoms. It is the first of its kind to target the underlying cause of pulmonary hypertension by helping to repair the damage caused to the blood vessels.

This disease is rare, but it can affect anyone, regardless of age, gender, or background. It does not discriminate, and its consequences can be fatal. That’s why I’m urging everyone, whether you have Pulmonary Hypertension or not, to please join us in advocating for Sotatercept—not just for me, but for all of us living in the shadows of this disease.

Cindy Hayman