NEWSLETTER NO. 13

This newsletter is the third and final interview in our mini-series featuring members of the BOSTON Clinical Program. Jennifer McGrain, Patient Advocacy at Zambon, discusses the need for better therapies from the patient perspective.

Our Commitment

A CHAT WITH

Jennifer McGrain

Patient Advocacy

In your experience, what are the main needs of BOS patients?

In my experience, I had the privilege to care for, get to know and learn from Bronchiolitis Obliterans Syndrome (BOS) patients. This taught me that these individuals have needs beyond the average person. Short of a cure, they would appreciate regaining the many facets of quality of life. They need a sense of security, that their disease will not progress too quickly. They need to feel calm, that they will not be short of breath every day. They need to not worry if they can afford their medications. They need to enjoy every day from the moment they wake up in the morning.

What are we doing for the scientific community?

We have fostered relationships with many key stakeholders. These collaborations with experts in the field provide us insight into the diseases, how care is managed and what is important for providers in how they treat their patients. Ideally, these nurtured relationships will be mutually beneficial when it comes to helping patients meet their needs in the future.

How does investigational inhaled L-CSA work and what symptoms are being evaluated in the BOSTON studies?

Inhaled Liposomal Cyclosporine A (L-CsA) is an experimental drug in development for the treatment of BOS. Cyclosporine A is a highly potent immunosuppressive drug, already established as a systemic medication.

The rationale of an inhaled therapy is to deliver the drug directly to the lungs, at the site of action, while minimizing the negative effects of systemic exposure. The goal of this novel approach for inhaled immunosuppression is to slow down or even stop disease progression.

This is why we are in clinical trials. People with BOS lose lung function. They become short of breath, they lose the ability to perform daily physical tasks, and some require supplemental oxygen. Ideally, a medication like investigational inhaled L-CsA, would slow that loss of lung function and delay the sequelae of disease.

1. J Heart Lung Transplant. 2017; Oct; 36(10):1037-1079

2. Chambers DC, et al. J Heart Lung Transplant; 37, (10):1169 – 1183

How Do You Like the Newsletters?

Feedback (positive or constructive) is welcome at boston.sitesupport@zambongroup.com.

Help Needed, Questions or Suggestions?

The development program for inhaled L-CsA for the treatment of bronchiolitis obliterans is very important to Zambon.

LabCorp is responsible for the operational conduct of the studies and your LabCorp contact should be your first point of contact for questions.

However, please do not hesitate to get in touch with us directly if you’d like. Emails addressed to boston.sitesupport@zambongroup.com will reach the Zambon study team and will be answered promptly.

Newsletters are for BOSTON clinical site personnel only and not intended to be shared with patients, trial participants or any external audiences.