Marketplace Access Project Applauds Bipartisan Letter from 181 Members of Congress Urging HHS to Protect Life-Saving Charitable Patient Assistance

Marketplace Access Project Applauds Bipartisan Letter from 181 Members of Congress Urging HHS to Protect Life-Saving Charitable Patient Assistance


Letter Introduced by Reps. Kevin Cramer (R-ND) & Doris Matsui (D-CA) Seeks to Protect Quarter of a Million Americans Who Depend on Charitable Assistance for Access to Critical Healthcare


WASHINGTON, D.C. (May 31, 2017) – The Marketplace Access Project (MAP), a group of leading national patient advocacy organizations dedicated to protecting non-profit insurance premium and cost-sharing assistance for individuals suffering from chronic and life-threatening illnesses, today applauded 181 members of the U.S. Congress for their letter urging Department of Health and Human Services (HHS) Secretary Tom Price to protect non-profit patient assistance by modifying a rule by the U.S. Centers for Medicare and Medicaid Services (CMS) allowing health insurers to deny coverage to patients who receive premium and cost-sharing assistance from charitable organizations.


“Nonprofit patient assistance organizations provide vital services to Americans who suffer from rare and chronic conditions,” the members of Congress wrote. “These organizations serve as a safety net for those most in need, enabling access to life-sustaining and life-saving therapies while preventing individuals and families from experiencing financial crises, such as bankruptcy and home foreclosures.”


On March 19, 2014, CMS issued federal guidance on third-party insurance payments for the new Exchange plans offered under the Affordable Care Act (ACA). In direct contradiction to the standard currently followed by Medicare, CMS failed to include non-profit charities on the list of acceptable premium and cost-sharing arrangements for patients covered by qualified health plans. Insurers across 41 states are now citing this rule to deny coverage to patients by rejecting the premium and cost-sharing assistance they were previously receiving from third-party charities, effectively undermining the intent of the ACA. The bipartisan letter led by Reps. Kevin Cramer (R-ND) and Doris Matsui (D-CA) and signed by 181 members of Congress calls on HHS Secretary Price to issue an administrative fix for the CMS guidance on third-party payments and require health insurance companies to accept payments from non-profit charity organizations that operate in compliance with the False Claims Act.


“181 members of Congress have taken a laudable stand for the quarter of a million Americans who depend on charitable patient assistance to survive,” said Dana Kuhn, Ph.D., president and founder of Patient Services, Inc., the founding member of MAP. “With health insurance costs on the rise, charities that provide premium and copayment assistance are needed now more than ever to ensure chronic patients receive adequate care. We urge HHS to listen to the mounting support for this effort both in Congress and across the country and immediately override CMS’s harmful guidance so that the most vulnerable Americans can continue to receive access to life-saving health care.”


“At no added cost to the public, non-profit patient assistance programs serve as a critical lifeline for individuals living with devastating diseases. Under CMS’s guidance, many patients who don’t qualify for public health plans are having to make the impossible choice between forfeiting their homes and staying healthy,” said Lisa Butler, executive director of GBS/CIDP Foundation International, a member of MAP. “It’s time for the administration to issue a long-overdue fix for this misguided rule.”


For more information on the Marketplace Access Project, visit


About MAP

The Marketplace Access Project (MAP) is a patient advocacy movement dedicated to protecting non-profit insurance premium and cost-sharing assistance for individuals suffering from chronic and life-threatening illnesses. For more information, visit, or follow MAP on Twitter (@AccessProjectUS) and Facebook (


May is GBS|CIDP Awareness Month – Honor Your Hero!

Honor Your Hero!

May is GBS|CIDP Foundation Awareness Month!

Get involved this year by honoring your hero!
Click the link below to make a donation in honor of your hero & we will notify them of your tribute!
Make sure to select ‘Dedicate my donation in honor or in memory of someone’ and provide their information OR select one of our e-cards for an instant notification!
Want to have your Hero featured on our social media? Email with a brief story & photo!

GBS|CIDP Foundation International 2017 Benson Clinical Research Fellowship





GBS|CIDP Foundation International

2017 Benson Clinical Research Fellowship 


The GBS|CIDP Foundation International is pleased to announce a competition for the second

Benson Clinical Research Fellowship.


The aim of the scheme is to provide funds (up to $150k per year for three years) to enable clinicians or non-clinical scientists in training or having recently completed training to engage in a substantial research project in the field of inflammatory neuropathy at a Centre or Centres of Excellence or an Institution approved by the committee. Preference will be given to candidates who intend to pursue a long-term career in this field.


Applicants should obtain application forms from Lori Basiege at


Completed Letter of Intent should be submitted by email to Lori Basiege at

by midnight Sunday June 14th 2017.  Shortlist candidates will be invited to submit Full Application by

Thursday August 31st 2017.


Largest Ever CIDP Clinical Study Completed

Largest Ever CIDP Clinical Study Completed

PATH study evaluated subcutaneous immunoglobulin efficacy and safety for treating Chronic Inflammatory Demyelinating Polyneuropathy
KING OF PRUSSIA, Pa. – 01 March 2017 – Global biotherapeutics leader CSL Behring announced today that it has completed the largest ever Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) trial, known as PATH (Polyneuropathy And Treatment with Hizentra®). The Phase III clinical trial was designed to demonstrate the efficacy, safety and tolerability of two different doses of CSL Behring’s subcutaneous immunoglobulin (SCIG), Hizentra® (Immune Globulin Subcutaneous [Human]), compared with placebo, in the maintenance treatment of CIDP patients previously treated with intravenous immunoglobulin (IVIG).
Hizentra, the no. 1 prescribed immunoglobulin therapy in treating primary immunodeficiencies (PI), the most prescribed SCIG worldwide, and the only 20% SCIG designed with the natural stabilizer L-proline, was self-administered by patients. Throughout the study, subjects were allowed to use dose volumes up to 50 mL/site and infusion rates of up to 35 mL/hour, to provide them with greater flexibility and autonomy to infuse when and where they choose. A long-term open label extension study is ongoing and is expected to be completed in 2017.
“Patients living with CIDP experience different symptoms with varying severities. We value organizations like CSL Behring whose ongoing neurology research continues to look at bringing new options for patients, caregivers and physicians to choose the individualized treatment that’s right for each patient,” said Lisa Butler, Executive Director, GBS/CIDP Foundation International.
“The PATH trial, our second major neurology study, drives us towards unlocking the promise of immunoglobulins for treatment of neurological conditions and demonstrates our commitment in this important medical specialty,” says Andrew Cuthbertson, ChiefScientific Officer and R&D Director. “We look forward to sharing the results of the PATH trial with colleagues at key neurology congresses this year.”
Investigators and patients in over 10 countries participated during the last five years to bring this groundbreaking prospective, multicenter, randomized, double-blind, placebo-controlled clinical trial to completion. A trial of this scale will contribute greatly to our understanding of these patients.
CIDP is a rare disorder of the peripheral nerves (those outside the brain and spinal cord). The condition is immune-mediated and the effects can worsen over time. The protective covering of the nerves is damaged, which may cause numbness or tingling, muscle weakness, fatigue and other symptoms. CIDP can occur at any age and is more common in men than in women. If left untreated, approximately 30 percent of CIDP patients will progress to wheelchair dependence.

Hizentra (Immune Globulin Subcutaneous [Human]), the first 20 percent SCIG developed for subcutaneous use, is registered in over 46 countries and approved in North America, Europe and Japan. Hizentra, the world’s most prescribed SCIG, has a proven track record of safety, efficacy and tolerability and has over 3.6 million exposures worldwide since 2010. In the United States, Hizentra is indicated for the treatment of patients with primary immunodeficiency and contraindicated in individuals with a history of anaphylactic or severe systemic response to immune globulin preparations or components of Hizentra, as well as in persons with selective immunoglobulin A deficiency who have known antibody against IgA and a history of hypersensitivity. In all 29 European/European Economic Area member states and Japan, Hizentra is authorized for treating patients diagnosed with PI as well as secondary immunodeficiencies.


For more information visit To view the pdf version of this press release please click here!