Why Haystack Project and Why Now:
There is no question that the incentives contained in the Orphan Drug Act (ODA) stimulated the development of treatments for rare and ultra-rare patients. But it isn’t enough to develop treatments if they can’t reach our patients.
The Medicare and Medicaid programs have not kept pace with science and the R&D in rare and ultra-rare conditions.
Neither have Employer-based insurance plans and Obamacare Exchanges.
Haystack Project is dedicated to ensuring patient access to treatment options for the rare and especially ultra-rare community. Policymakers must consider the incentives and policies that insurance companies, both public and private, use to deter patient access to the treatments they have waited for and often actively participated in bringing to market. Started in 2016, Haystack Project brings together patient organizations representing extremely rare diseases to learn from each other and speak out about the systemic barriers to appropriate patient care for our community.
About Our Organization
Haystack Project is organized exclusively as a charitable and educational organization within the meaning of section 501(c)(3) of the Internal Revenue Code of 1986, as amended (or any corresponding provisions of any future United States Internal Revenue law or regulations thereunder, hereinafter collectively referred to as the Internal Revenue Code), for the following purposes:
(a) To support a national network of rare and ultra-rare disease advocacy organizations;
(b) To provide a mechanism for policy development and dissemination to external audiences that encourage healthcare payer policies and mechanisms that recognize the unique circumstances of extremely rare conditions and treatments, encourage innovation, and enable access to care for patients impacted by these conditions;
(c) To enhance collaboration and information exchange among patient advocacy organizations within the rare and ultra-rare disease communities;
(d) To amplify the voice of rare and ultra-rare disease patients on issues impacting availability of and access to treatment; and
(e) To engage in any other activities that are not inconsistent with Section 501(c)(3) of the Internal Revenue Code and applicable state law.
