A proposed CMS rule that would reduce physician-reimbursement for a buy and bill therapy that countless pain patients relied upon to control their chronic pain as an alternative to opioids would be unavailable if this rule were to be implemented, as physicians wouldn’t recover the cost of the drug and simply discontinue using it, as they’d be underwater on it.
Working within the scope of the company’s Patient Advocacy and Public Relations (PA & PR) teams, these groups decided upon the topics, speakers, logistics, target audience, and promotion for each event. The goal was to create an event that held interest for abroad-based advocacy and industry audience consisted of a “marquee” panel that would help draw an audience, and stood out as different from other competitive events at the medical meetings, with topics including “Creating a Global Patient Advocacy Infrastructure Supporting a Global Product Launch,” “Diversity in Cancer Clinical Trials,” and “The Power of Patient Story Telling.” In order to assure these events and topics had the potential for media coverage, invitations were extended for all media attending the conferences with the planning group selecting a prominent reporter/editor to serve as panel moderator.
Every event attracted a diverse audience of nearly 200 attendees, comprised of patient advocacy, industry R&D,
The power of these stories, of patients threatened by the thought of losing a treatment option that they relied upon to manage their condition was the most powerful possible advocacy tool that subsequently resulted in CMS rescinding the proposal under pressure from stakeholders, protecting patient access and saving what was calculated as several hundred million dollars in revenue for this one manufacturer.
It was an example of the power of patient voices, and the refrain: “Nothing about us without us.”
When we built a platform and provided ampliﬁcation support, these patients did not hesitate to exercise their collective power. They simply weren’t going to stand idle as effective treatment options were taken from them. Investing in their community, collaborating with them to build an effective coalition, and standing aside to let the grassroots energy take the strategy into a whole new stratosphere ended up saving access to treatment options and a signiﬁcant business line for the partner biotech.
- CMS rescinded implementation of the policy change.
- Pain community successfully caused CMS leadership to recognize the potential negative fallout of draconian rule change.
- Biopharma ﬁrm defended patient access to its therapy, saving annual business line of several hundred million dollars.