Two Organizations Fighting for Access to Today’s and Tomorrow’s Treatments – The Haystack Project and the Rare Cancer Policy Coalition (RCPC)
With a wealth of knowledge and experience in market access and reimbursement, Saira Sultan wanted to do more to support patients and patient groups in navigating this complicated landscape for rare and ultra-rare diseases and the orphan and ultra-orphan drugs needed to treat them. To this end, Saira founded the Haystack Project three years ago with the aim of enabling rare and ultra-rare disease patient advocacy organisations to coordinate and focus efforts that highlight and address systemic reimbursement obstacles to patient access. Their core mission is to influence the evolution of health care payment and delivery systems with an eye toward spurring innovation and quality in care, and ensuring access to effective, accessible treatment options for all Americans living with ultra-rare conditions
Advances in research and the emergence of regenerative medicines, gene therapies and other personalised targeted treatment plans comes high treatment costs and ensuring these treatments will be accepted by payers and reach patients is a pressing concern.
Working at governmental policy level, Haystack Project strives to ensure policy for access and reimbursement is fit for purpose and considers the unique challenges for treating rare and ultra-orphan rare diseases such as how patients define value vs. payers and how payment systems based on averages don't work for ultra-rare numbers.
Haystack Project is now a 501(c)(3) with a Board of Directors seasoned in reimbursement policy, and Saira now serves Haystack as the organisation’s senior policy consultant. Cyndi Goss, Chairman of Haystack's Board noted, "Saira's ability to unify divergent groups around a solution and a message is critical to our efforts, but the real strength of Haystack lies in the patient organisations that come together every month, and several times in between, to share their experiences and learn about the policies they may know little about on paper but see play out in their patients' lives every day"
Time for a dedicated Rare Cancer Policy Coalition
With the National Cancer Institute defining a rare cancer as fewer than 15 out of 100,000 incidence per year, Saira felt that a new initiative was required to tackle the unmet need in rare cancers. Rare cancers are often associated with poorer outcomes, late diagnosis and ineffective treatment options mean higher mortality rates for certain types of rare cancer. A lack of research in this area also results in knowledge gaps and little interest from drug developers, but despite these challenges new therapies do come to market and so it is crucial that these life-saving treatments are accepted by payers and reach patients. Similarly, the metrics and models used to assess “value” of new treatments are a poor fit in evaluating new, and potentially costly, cancer treatments. The advocacy community can and should play a pivotal role in determining what a potentially life-saving treatment is worth.
The Rare Cancer Policy Coalition (RCPC), created under the auspices of Haystack Project, focuses on rare and ultra-rare cancers. RCPC brings together cancer patient organisations to provide them with a powerful and collaborative voice.
RCPC provides participants a platform for focusing specifically on systemic reimbursement barriers and emerging landscape changes that impact new product development and treatment access for rare cancer patients. It is the only rare cancer coalition developed just to focus attention on reimbursement, access and value issues across the rare cancer community. Working within the Haystack Project enables RCPC participants and rare and ultra-rare patient advocates to leverage synergies and common goals to optimise advocacy in disease states where unmet need is high and treatment inadequacies can be catastrophic.
Haystack Project CEO, James Caro, whom worked with Saira in previous roles, said, "Saira has consistently proven that working with the leaders of advocacy organisations and their patients enriches every policy effort. The RCPC is a natural development since Saira has been steeped in oncology policy almost since the beginning of her career."
Working together with researchers, physicians, patients and industry is the most powerful way I know to make the case for rare patients’ needs
“Working together with researchers, physicians, patients and industry is the most powerful way I know to make the case for rare patients’ needs. Systemic barriers to treatment for really rare conditions must be eliminated. Our reimbursement system is the product of a time when we didn’t know if the Orphan Drug Act would work. Well, we now know it has worked and we haven’t adjusted for it on the payer side. Without those changes, we systematically discriminate against ultra-rare patients. This work reminds me why I’ve loved this field for over 25 years.”
Saira is President and CEO of Connect 4 Strategies. She earned her law degree from the University of Viriginia and has worked in the U.S. Congress, Medtronic, Pfizer and Sanofi before starting Connect 4. The board of directors are listed at www.haystackproject.org
To find out more about the Haystack Project or the Rare Cancer Policy Coalition please contact Saira at Saira.Sultan@haystackproject.com
And visit https://haystackproject.org/ and https://haystackproject.org/rare-cancer-policy-coalition
Rare Revolution Editor