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Neuropathy Patients, Doctors and Medical Professionals Rally in Sacramento to

Demand Access to Lifesaving Medical Treatments

http://www.earthtimes.org/articles/show/neuropathy-patients-doctors-and-medical,\

874583.shtml

California Assemblymember Hayashi Calls on California Congressional

Delegation to Remember Needs of Neuropathy Patients at 3rd Annual " Neuropathy

Action Awareness Day "

SACRAMENTO, Calif., June 25 /PRNewswire/ -- As President Obama continues his

push for national health care reform, more than 300 neuropathy patients,

physicians and medical professionals gathered in Sacramento today to call on

Congress to restore access to life-sustaining and lifesaving treatments for

neuropathy patients. At a press conference kicking off the third annual

" Neuropathy Action Awareness Day, " California Assemblymember Hayashi and

those in attendance signed a petition encouraging the California Members of

Congress to remember the needs of neuropathy patients while working on federal

health care reform legislation.

" Neuropathy patients and advocates in California spoke with one voice today to

demand access to the lifesaving treatments we need, and to help ensure that

Congress protects neuropathy patients as it continues the national health care

reform debate, " said Vogel, Executive Director of the Alliance for

Plasma Therapies. " As President Obama and Congress look for ways to cut health

care spending, they must also restore access to critical therapies such as IVIG

(intravenous immune globulin) which is used to treat patients suffering from

neuropathy, multiple sclerosis, myositis and pemphigus, among other conditions. "

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 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

getting timely and effective treatment, " said Vogel. " In addition to

restoring access to treatment for all Americans, Congress should enable

physicians, not health insurers, to determine what is best for patients and what

constitutes medically necessary care. "

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.

www.neuropathyaction.org

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