Antidote is proud to present the tenth edition of Talk of the Towne. This installment is very special! Recently, we attended SCOPE 2020, where we recorded our first Talk of the Towne live episode in person.
Rich Towne had a wonderful conversation with Pam Cusick. She is the Senior Vice-President at Rare Patient Voice. The two had a chance to discuss the mission of Rare Patient Voice and how it helps patients, their families, and researchers. This episode comes out right in time for Rare Disease Day on February 29th. Listen to this special episode and read the transcription below!
Rich Towne
Welcome to Talk of the Towne. This podcast is produced by Antidote and bridges the gap between clinical research, conversation, and podcasts. Rich Towne is a pharmacist by training and senior clinical informatics director at Antidote. Pam Cusick is the Senior Vice President of Rare Patient Voice and one of Antidote’s Partner Network members. Pam Cusick has more than 30 years of experience as a research professional. She is also an expert in the design, implementation, and analysis of studies. Her experience in public health communication and research, combined with her passion for advocacy and patient care, is a perfect fit with Rare Patients’ Voice mission and visit. Pam is the senior vice president of RPV. She focuses on RPV’s continued success and growth, with a focus on client service, business development, and overseeing patient outreach, panel management, and marketing. Pam, welcome back to Talk of the Towne.
Pam Cusick
In the United States, rare diseases are defined as any illness, disease, or disorder that affects fewer than 200,000 people. Over 7,000 rare diseases have been identified, and 30 million Americans are estimated to be living with a condition of this type. Rare diseases are often missed by many because they are unfamiliar. Rare Patient Voice and other organizations like it are helping to raise awareness of these conditions. Rare Disease Day is a key part of this campaign. It falls on the 29th of February this year. The day aims to increase awareness and support for those affected by rare conditions and their families.
Rare Patient Voice, which celebrated its 10th birthday recently, covers 1,500 diseases in nine countries. Patients and caregivers have been paid over $13 million to participate in research. They also work with thousands of organizations, patient advocacy groups, and individuals. Pam is a rare patient voice employee, and I am excited to talk with her about the work she does. We will focus on research breakthroughs and trials and how important it is to raise awareness.
In the last ten years, the Rare Patient Voice program has impacted the lives of many individuals with rare conditions and their caregivers. Do you have any particular highlights from the last decade that you would like to share?
Pam Cusick
We have introduced patients to so many fascinating things. We started as a market research company, connecting patients to interviews, focus groups, and surveys in order for them to give their feedback on products that are being developed or new items coming onto the market. Over time, we have expanded our services to include clinical research, medical affairs, and usability studies, where patients test devices. Patients participated in a cool project a few years ago when a clothing company was trying to make accessible clothing. They wanted patients to test the clothing on people who have mobility issues. We arranged for them to send clothing to people with mobility issues, who could then test it out and give feedback. The company then developed that line.
It’s not surprising that we began with this. Over time, there has been an increase in interest in clinical trials. Everyone knows that at Scope, it is difficult to find patients. We go to events. This is an interesting way of connecting with patients. We’ll attend the National Hemophilia Foundation Conference or Sickle Cell Conference to meet patients. We will explain the research to them, and they can decide whether they want to participate. We have actually met many of these patients, and we’ve connected with them during events. They then spread the word to their friends, families, and communities.
We’ve been in business for only ten years, but we’ve already grown to 145,000 patients. Some of these companies have millions of patients they are connected to through EHRs, etc., but they may not be people who joined because they wanted to share their experiences and voices. That’s a cool thing about us because we are a bit different in how we connect with our patients.
Rich Towne
Do you think that the desire for rare patients who are interested in clinical trials was always present, but they didn’t have a voice?
Pam Cusick
People were unfamiliar with research. When we explain to people what they can do, I often hear, “Why would anybody want to talk to you?” Why would anyone want to listen to what I say about a particular product or service? They’re experts at what they do, which blows my mind. They have to live with it every day. They are more aware than the average person of what they experience. Their input is very important when it comes to a service or project.
The lack of knowledge about research is one issue. COVID-19 introduced people to clinical trials despite its negative aspects. People began to understand that they were something that could be done. It’s not something that everyone knows about or how to get involved. A couple of years ago, we conducted an internal study on how people wanted to know about clinical trials. They also wanted to hear from their doctors. If they live in a rural area in, say, California and their doctor doesn’t work in research, they may never learn about available trials. They’re worried about their disease and find it hard to deal with on their own.
It’s definitely a matter of awareness. Rare patients take, on average, ten years to be diagnosed, so they would not know which trials to search for because they do not know what condition they have. There are also fewer people to test for trials, and with that comes a lack of options.
