CCFA Interview with Michael Osso (Part Two)

(BACK TO PART ONE)

I have heard some patients voice concern over CCFA not employing enough patients. Here’s the thing–by law, when an organization is hiring individuals, they are not allowed to ask about a person’s medical history. With that said, I was assured that CCFA, being  geared toward providing support and finding cures, is obviously very concerned about the interests of the patients.

Today, “the organization is dedicated to not just representing the patient,” Mr. Osso said, their focus is “really being patient-centric.” This means that patients have a “seat at the table” so-to-speak. Mr. Osso explains, “Their voice and their input is being heard. At every stage of developing new programs, we’re incorporating the patient voice.” This means inviting patients to sit on committees, task forces or work groups, focus groups, surveys and through programs like Take Steps, Team Challenge and other awareness-building activities. Many of these programs are built up of patients and caregivers who know first-hand what living with IBD is like. CCFA also has patient governance committees for several of its research initiatives. They want people to understand in no uncertain terms that they want the patients’ voices heard and represented.

Understand Your Treatment Options

Another goal of CCFA, which I think is important, is that they work with pharmaceutical companies so that patients can understand all of their treatment options. The two work together putting out materials and educational events so that patients can make informed decisions about their options. Some people say that pharmaceutical companies are all about the money, but as I’ve mentioned before, I was given the opportunity to go behind-the-scenes at one of the facilities to find out what they’re all about. Read that post here.

I was also given the opportunity to find out how the donations are divvied up. Approximately $0.20 of every dollar goes toward fundraising, management, operations, and administration. The remaining $0.80 goes toward mission programs. Thirty-eight percent of the $0.80 goes toward research. The remaining percent goes toward patient education, patient support, healthcare professional education and advocacy efforts.  I have found in my research that all of these allocations are very common to most non-profit organizations. You can find out more about how CCFA’s funds are allocated here.

Another concern I addressed was the fact that many indeterminate colitis patients–and even ulcerative colitis patients–often feel that their diseases are overshadowed by Crohn’s Disease… which is more widely-known. The term Crohn’s and Colitis is applied broadly as a general term. “Truthfully,” Mr. Osso said, “we do the community a disservice by calling all of those patients Crohn’s patients or all the patients Colitis patients because they have very different diseases, often one from the other.” If you have lived with IBD for any length of time or have spent any time in the community, you know that each disease is so different and it varies from person to person. The diseases present themselves in very different ways and the treatments for these diseases are complex and extremely difficult to pinpoint for each individual.

We do the community a disservice by classifying them all under #IBD. @CCFA Click To Tweet

I remember back when I was trying to decide on whether or not I should try biologics. It was a really scary time for me. My doctor’s nurse told me, “You know, Amber. I’m not so sure there are only two diseases or even three diseases here. IBD is so complex we might actually be dealing with many, many different diseases that present themselves in the same way.” It made a lot of sense.

(CONTINUE READING – PART THREE)