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Neuropathy Patients, Doctors and Medical Professionals Rally in Sacramento to Demand Access to Lifesaving Medical Treatments
Date:6/25/2009

gned a petition, to be delivered to the California Congressional delegation, which stated:

        We, the undersigned, respectfully ask the Members of Congress from the
        State of California to co-sponsor H.R. 2002 and S. 701, the Medicare
        Patient IVIG Access Act of 2009, which restores access in all sites of
        care to intravenous immune globulin (IVIG) to patients who rely on
        this lifesaving therapy.  We further ask our Members of Congress to
        remember, while debating healthcare reform, that all patients,
        especially those with rare diseases, need access to all therapies
        prescribed appropriately by their physician and that because every
        patient is unique, personalized medicine must play a role in
        diagnosing and treating patients with all diseases.

"Every time my neurologist orders a treatment, managed care denies the request, and each time I have to file an appeal to receive the treatment that my doctor thinks is best," said Stacey Westurlund, a 31-year-old social worker and neuropathy patient from Lodi, CA, who spoke at the press conference today. "I have to employ my skills as a social worker to become my own advocate - researching available treatment options, partnering with my doctors, and appealing managed care and insurance company decisions."

Westurlund, who signed the petition to Members of Congress after Assemblymember Hayashi, was misdiagnosed for a year before being diagnosed with a form of polyneuropathy. Stacey benefits from regular treatments of IVIG at home through Medicare, but because her painful condition keeps her from driving, she was forced to fight health insurers for months until she got coverage to receive her treatments at her home.

"The last major health care reform legislation passed by Congress decreased Medicare reimbursements for neuropathy patients and increased obstacles to gett
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SOURCE Alliance for Plasma Therapies
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