Payer Engagement

Connecting Rare & Payor Expectations

Haystack Project is a non-profit (501(c)(3)) coalition of 140+ ultra-rare patient groups that highlights and addresses systemic patient access obstacles to rare and ultra-rare therapies through focused, unified education and outreach.

For patients, particularly those with rare and ultra-rare conditions, our health care system can look like a tug-of-war between patients and/or their providers and payers. Haystack Project seeks to find the common ground between payers and patients, premised on a shared understanding that getting the right treatment(s) to the right patients at the right time is in everyone’s interests.

We realize that our participating groups’ efforts to learn and educate themselves about barriers to patient access must include payers. Without this partnership, we miss critical perspectives in driving towards pragmatic, sustainable solutions for our patients.

To connect these parties and their interests, Haystack is launching ROPE BRIDGE. We envision this initiative as a collaborative, bi-directional education effort to enable both sides to better understand rationales for access barriers and their impact across rare and ultra-rare disease stakeholders.

ROPE BRIDGE will operate within the following principles:

Regular, easy communication and a free exchange of ideas.
Active listening.
Seek solutions to make the health care system work better for payers & patients.

Through the leadership of highly qualified and professional staff, ROPE BRIDGE will spearhead and manage the following:

Build relationships and an ongoing dialogue with associations that represent subsets of payers, like Medicare Advantage plans, Medicaid managed care plans, and other community, regional, and national plans.
Create a Payer Council that will, like Haystack’s Corporate Council, provide continuous and in-depth insights to help strengthen our understanding of utilization management approaches and how to work with our providers to meet, and if warranted, refine payers’ documentation and other requirements for medical necessity.

Our regular conversations will focus on issues such as the patient journey, the lengthy path to diagnosis, access to out-of-network specialists, the distinction between labeled indications and study populations, the impact of value frameworks, and more. These conversations will provide a level-setting for our participating patient organizations, and we hope they will lead to –

Speakers at Haystack Project meetings
Insights into Haystack Project and payer-initiated policy initiatives.
Mutually beneficial solutions crafted together to improve patient care
Relationships that broaden Haystack’s advocacy reach
Convening discussion forums for emerging threats and opportunities across stakeholders
Common ground for shared goals and/or rational, win/win compromises in Agency and legislative initiatives

Haystack Project will integrate our learnings into our member meeting schedules and policy priorities.

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