Mission & Principles

The State Patient Access Coalition (SPAC) is a group of the world's leading manufacturers and distributers of specialty pharmaceuticals whose mission is to ensure patient access to medically appropriate therapies and providers. The SPAC focuses on access to clotting factor therapies which are vital for individuals with rare bleeding disorders, including hemophilia and von Willebrand Disease. The coalition works together in support of these principles:

Patients need access to affordable health care insurance.
SPAC believes patients deserve access to medically appropriate health insurance regardless of health or disability, employment status, age, or medical predisposition. Specifically, SPAC urges state governments to adopt legislation and/or regulations that protect patients from health insurance company practices that impose punitive cost-sharing requirements upon patients with bleeding disorders.

Patients need access to quality providers.
State Medicaid programs should consider the needs of those with bleeding disorders when implementing changes to their Medicaid program. Not every specialty pharmacy provider has the training and experience necessary to provide these patients with quality care. For this reason, SPAC urges legislatures and Medicaid agencies consider the National Hemophilia Foundation’s Medical and Scientific Advisory Council (MASAC) Recommendation 188 when deciding on specialty pharmacy services for Medicaid recipients with bleeding disorders.[1]

Patients should have unfettered access to drugs and biologics.
SPAC supports patient access to all medically appropriate clotting factor therapies. These therapies are not therapeutically or pharmaceutically equivalent, therefore they are not interchangeable. An individual patient may tolerate or respond to one therapy better than another in the same class due to important clinical and manufacturing differences. For this reason, SPAC urges policymakers to follow MASAC Recommendation 159 [2] to respect and reimburse the prescribed therapy.

Reimbursement for providers should adequately reflect the positive impact that clotting factors give patients.
SPAC supports Medicaid provider reimbursement that recognizes the acquisition, delivery, and administration of unique and effective drugs and biologics such as clotting factors. These costs include:

    • Specialty pharmacy distribution channels and special delivery requirements such as refrigeration of large bulky packages with proof of delivery.
    • Medically necessary nursing. Many patients require nursing assistance to administer clotting factor therapies.
    • Medically necessary ancillary supplies such as tubing, needles, pumps and waste disposal services.
    • Emergency delivery and 24 hour support by nurses and pharmacists trained in bleeding disorders.
    • Case management services.
    • Inventory Management
    • Adverse drug reaction monitoring and reporting and notification of product recalls and withdrawals.

[1] MASAC Recommendation #188 (last visited January 1, 2015), available at: 
http://www.hemophilia.org/sites/default/files/document/files/masac188.pdf 

[2] MASAC Recommendation #159 (last visited January 1, 2015), available at: 
http://www.hemophilia.org/sites/default/files/document/files/masac159.pdf