Neuropathy Patients, Doctors and Medical Professionals Rally in Sacramento to Demand Access to Lifesaving Medical Treatments
Posted on: Thursday, 25 June 2009, 20:51 CDT
"Neuropathy patients and advocates in
Neuropathy Action Awareness Day, sponsored by the Neuropathy Action Foundation (NAF) and the Alliance for Plasma Therapies (APT), gathered patients, physicians and medical professionals and representatives from other organizations including The Neuropathy Association, Foundation for Peripheral Neuropathy and International Pemphigus and Pemphigoid Foundation to learn about neuropathy and to promote awareness of the disease. Patients and patient advocates in attendance signed 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
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 getting timely and effective treatment," said
About the Neuropathy Action Foundation
The Neuropathy Action Foundation (NAF) is dedicated to ensuring neuropathy patients obtain the necessary resources, information and tools to access individualized treatment to improve their quality of life. The NAF increases awareness among physicians, appropriate institutions, the general public and public policy officials that neuropathy can potentially be a serious, widespread and disabling condition, which may be treatable when appropriate medical care is provided.
About the Alliance for Plasma Therapies
The Alliance for Plasma Therapies is a national non-profit organization established to provide a unified, powerful voice of patient organizations, healthcare providers and industry leaders to educate about the diseases that rely on plasma derived therapies and advocate for fair access to plasma therapies for patients who benefit from their lifesaving effects.
SOURCE Alliance for Plasma Therapies
Source: PR Newswire
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