Graham Cassidy Legislation Action Alert – We Need Your Help!

Dear Friends,

As you are well aware, healthcare reform is constantly evolving. Advocacy is one of our four mission pillars and we are committed to representing the patient voice while keeping our community informed. While the Foundation remains non-partisan, our primary focus remains on patient protections and insuring access for necessary treatments.

This current proposal would be particularly harmful to individuals and families impacted by chronic health conditions. The specifics of the Graham Cassidy legislation is outlined in the attached Action Alert. Please contact your Senators and inform them of the impact that this would have on you!

Please take action and let us know if we can assist you in the process!


Action Alert


Senators Lindsey Graham (R-SC), Bill Cassidy (R-LA), Dean Heller (R-NV), and Ron Johnson (R-WI) recently introduced legislation known as Graham-Cassidy to repeal and replace the Affordable Care Act (ACA). The hope of these lawmakers was to hold yet another vote on repeal before October 1st, so a simple majority (51 votes) is all that is needed to pass the measure. Unfortunately, the Graham-Cassidy proposal is more extreme than other recent Senate proposals and would be particularly harmful to individuals and families impacted by chronic health conditions. Specifically, the new proposal would:


  • Allow insurance companies to charge more for those individuals with pre-existing health conditions
  • Allow states to more easily opt out of requiring quality health insurance options and comprehensive benefits
  • Expand the ability for individuals to purchase low quality health insurance benefits in lieu of more comprehensive coverage
  • Eliminate the individual and employer mandates
  • Dramatically reduce the federal commitment to Medicaid expansion
  • Eliminate the Prevention and Public Health Fund


While this effort was initially dismissed by many as a “Hail Mary,” it has quickly gained support and could be voted on next week. In order to protect patients with chronic conditions, please contact your Senators and ask them to oppose the Graham-Cassidy repeal and replace proposal.


Take Action

  • Contact the health Legislative Assistants (LAs) in the offices of your two U.S. Senators and use the message below for a voicemail or brief e-mail. The contact information for your Senate offices can be found at


Dear _______,


My name is _________ and I am a constituent from [home town]. On behalf of patients with chronic health conditions, I urge the Senator to oppose the Graham-Cassidy healthcare proposal. This proposal would be absolutely devastating to individuals and families affected by chronic illness that rely on access to quality, affordable health care.


[Explain a little about your particular situation]


Thank you for your consideration of my request. Please tell me how you have responded to my request.





The GBS|CIDP Foundation Announces Three New Members Elected to the Board of Directors

The GBS|CIDP Foundation announces three new members elected to the Board of Directors at the spring Board meeting held near the Foundation headquarters in Philadelphia, PA.  Jim Crone, President of the Board commented, “Gail, Shane and Dominick each bring diverse skills and experiences, which complement the current Board, and we welcome their voice at the table!”


Gail Moore is the Director of Global Patient Advocacy at Horizon Pharma, Inc. In this role, Gail connects the leadership of national patient organizations and Horizon Pharma. Prior to this current role, Gail worked in the non-profit sector with the Immune Deficiency Foundation and the United Way of South Florida. Gail’s extensive volunteer experience include work with The Immune Deficiency Foundation, Angels for Life Foundation, the Chamber of Commerce and the Oaks School. Having graduated from Saint Leo University, Gail brings a passion for patient relations, patient access, volunteer recruitment and program design and implementation. Gail resides in Lakeland, Florida.

Shane Sumlin is First Vice President, Investment Officer for Wells Fargo Advisors in Shreveport, LA. Prior to this, he served as a Financial Advisor to Wachovia, A.G.Edwards, and Merrill Lynch. Shane has been awarded with The Premier Advisor designation from Wells Fargo in 2014. Shane’s volunteer experience includes many leadership positions at his church including serving on the Finance Committee.  He also serves as an elected Board member of the Shreveport C.E.O. Organization. Shane is a GBS survivor as well as a volunteer Liaison. He created his own fundraiser in 2014 and has supported the Foundation’s Walk & Roll program with his own team. Shane graduated from Louisiana Tech University and was awarded the Wells Fargo Service Excellence award in 2016. Shane lives with his wife and two children in Shreveport, Louisiana.

Dominick Spatafora is the Director of Advocacy and Professional Relations in the Western region for Pfizer, Inc.  In eleven years at Pfizer, Dominick has focused on identifying, recruiting and managing a portfolio of state and national relationships with key patient, multicultural, business, community and civic organizations for advocacy. Prior to Pfizer, Dominick worked for the Los Angeles County Medical Association and presided over DVS Government Consulting Solutions. Dominick graduated from Arizona State University with a BS and later from The American University with a Master’s in Public Administration. Dominick has held several volunteer leadership positions including the founding of the Neuropathy Action Foundation and serving as the Chair of the Corporate Advisory Committee for the California Medical Association Foundation. As Multifocal Motor Neuropathy ( MMN)  patient, Dominick represents the patient voice with complete understanding. Dominick resides in Marina del Rey, California.


The GBS|CIDP Foundation International is the preeminent global non-profit organization supporting individuals and their families affected by Guillain-Barré syndrome (GBS), chronic inflammatory demyelinating polyneuropathy (CIDP), and related syndromes through a commitment to support, education, research, and advocacy. The Foundation has more than 35,000 members throughout 47 countries and has a 19 member Global Medical Advisory Board comprised of the world’s leading physicians in peripheral neuropathy research and patient care.

CSL Behring Announces FDA Approval of Privigen®

CSL Behring Announces FDA Approval of Privigen® [Immune Globulin Intravenous (Human), 10% Liquid] for the Treatment of Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) in Adults

KING OF PRUSSIA, Pa.Sept. 14, 2017 /PRNewswire/ — Global biotherapeutics leader CSL Behring today announced that the U.S. Food and Drug Administration (FDA) has approved Privigen® [Immune Globulin Intravenous (Human), 10% Liquid] for the treatment of adults with chronic inflammatory demyelinating polyneuropathy (CIDP) to improve neuromuscular disability. CIDP is a rare autoimmune disorder that affects the peripheral nerves and may cause permanent nerve damage.

“The FDA approval of Privigen for CIDP represents a significant milestone for individuals with this debilitating and progressive disease. It is a testament to our commitment to meet the needs of patients with disabling neurologic conditions, including CIDP,” said Dr. Andrew Cuthbertson, chief scientific officer and director of Research and Development for CSL Limited. “As we focus on building a leading neurology franchise, we continue to advance clinical research to determine innovative and improved uses of immunoglobulin therapy that can benefit patients and improve their quality of life.”

The FDA approval was based on results from two Phase III clinical studies that focused on the use of immunoglobulin (Ig) therapy for treating CIDP – the Polyneuropathy And Treatment with Hizentra (PATH) study, the largest controlled clinical study in CIDP patients to date, and the Privigen Impact on Mobility and Autonomy (PRIMA) study. In PATH, 207 patients receiving Privigen were studied for up to 13 weeks, and 73 percent responded to Privigen over the course of treatment, as measured by their adjusted score on the Inflammatory Neuropathy Cause and Treatment (INCAT) scale, which measures the ability to walk and perform tasks. In PRIMA (n=28), 61 percent of patients responded to Privigen over 25 weeks, as measured by their adjusted INCAT score.

“It is a priority in the care of CIDP patients to provide therapies that improve and maintain strength and function while at the same preventing relapses and minimizing side effects. However, current treatments do not work for all CIDP patients,” said Dr. Mazen M. Dimachkie, Professor and Director of Neuromuscular Division, Executive Vice Chairman, Department of Neurology at the University of Kansas Medical Center and an investigator in the PATH study. “Privigen’s approval by the FDA for the treatment of CIDP means that people with CIDP and their treating physicians have gained another treatment option that is safe and effective in helping improve strength and motor function, while potentially delaying disease relapse.”

“People living with CIDP can experience a progression of their disease, which may result in tingling, muscle weakness, fatigue and other symptoms that limit their daily activities and decrease their quality of life,” said Lisa Butler, executive director of the GBS|CIDP Foundation International. “The approval of this intravenous immunoglobulin to improve disability represents an important treatment advance for the patients, caregivers and families who are struggling with CIDP. We are grateful for CSL Behring’s efforts in this area and their commitment to advancing patient care for the CIDP community.”

For more information about Privigen, including the U.S. Prescribing Information, visit

About CIDP
In CIDP, a rare autoimmune disorder that affects the peripheral nerves (those outside the brain and spinal cord), the myelin sheath, the protective covering of the nerves, is damaged. This may result in numbness or tingling, muscle weakness, fatigue and other symptoms. CIDP effects can worsen over time, leading to significant activity limitations and a decreased quality of life. CIDP can occur at any age and is more common in men than in women. Approximately 30 percent of CIDP patients will progress to wheelchair dependence if not treated. In the U.S., it is estimated that the incidence of CIDP is up to two patients per 100,000 people each year,i with a prevalence of 40,000 people affected.ii

About Privigen®
Privigen is the first and only 10 percent, ready to use, room-temperature stored, liquid IVIG stabilized with proline. A naturally occurring amino acid, proline has been shown to reduce IgG aggregation and dimer formation. Privigen has been approved to treat CIDP in Europe since 2013. In the U.S., Privigen is also approved for primary humoral immunodeficiency (PI) and chronic immune thrombocytopenic purpura (ITP) in patients age 15 years and older. It is available in over 70 countries around the world for treating these and other rare diseases.

Important Safety Information
Immune Globulin Intravenous (Human), 10% Liquid, Privigen®, is indicated for the treatment of:

  • Primary humoral immunodeficiency (PI)
  • Chronic immune thrombocytopenic purpura (ITP) in patients age 15 years and older
  • Chronic inflammatory demyelinating polyneuropathy (CIDP) in adults
    • Limitation of use: maintenance therapy in CIDP has not been studied for periods longer than 6 months. Individualize duration of treatment beyond 6 months based on patient response.


  • Thrombosis may occur with immune globulin products, including Privigen. Risk factors may include advanced age, prolonged immobilization, hypercoagulable conditions, history of venous or arterial thrombosis, use of estrogens, indwelling vascular catheters, hyperviscosity, and cardiovascular risk factors.
  • Renal dysfunction, acute renal failure, osmotic nephrosis, and death may occur with immune globulin intravenous (IGIV) products in predisposed patients. Renal dysfunction and acute renal failure occur more commonly in patients receiving IGIV products that contain sucrose. Privigen does not contain sucrose.
  • For patients at risk of thrombosis, renal dysfunction or renal failure, administer Privigen at the minimum dose and infusion rate practicable. Ensure adequate hydration in patients before administration. Monitor for signs and symptoms of thrombosis and assess blood viscosity in patients at risk for hyperviscosity.

See full prescribing information for complete boxed warning.

Privigen is contraindicated in patients with history of anaphylactic or severe systemic reaction to human immune globulin, in patients with hyperprolinemia, and in IgA-deficient patients with antibodies to IgA and a history of hypersensitivity.

In patients at risk of developing acute renal failure, monitor urine output and renal function, including blood urea nitrogen and serum creatinine.

Hyperproteinemia, increased serum viscosity, or hyponatremia can occur with Privigen. Infrequently, aseptic meningitis syndrome (AMS) may occur—especially with high doses or rapid infusion.

Hemolysis, either intravascular or due to enhanced red blood cell sequestration, may occur. Risk factors include non-O blood group and high doses. Closely monitor patients for hemolysis and hemolytic anemia.

During and shortly following Privigen infusion, elevations of systolic and diastolic blood pressure (including cases of hypertensive urgency) have been observed. These elevations resolved or significantly improved within hours with oral anti-hypertensive therapy or observation alone. Check patients for a history of hypertension and monitor blood pressure during this period.

Consider relative risks and benefits before prescribing high-dose regimen for chronic ITP and CIDP in patients at increased risk of thrombosis, hemolysis, acute kidney injury or volume overload. Monitor patients for pulmonary adverse reactions (transfusion-related acute lung injury [TRALI]).

Privigen is derived from human plasma. The risk of transmission of infectious agents, including viruses and, theoretically, the Creutzfeldt-Jakob disease (CJD) agent and its variant (vCJD), cannot be completely eliminated.

In clinical studies of patients with PI, the most common adverse reactions to Privigen, observed in >5% of subjects, were headache, fatigue, nausea, chills, vomiting, back pain, pain, elevated body temperature, abdominal pain, diarrhea, cough, stomach discomfort, chest pain, joint swelling/effusion, influenza-like illness, pharyngolaryngeal pain, urticaria, and dizziness. Serious adverse reactions were hypersensitivity, chills, fatigue, dizziness, and increased body temperature.

In clinical studies of patients being treated for chronic ITP, the most common adverse reactions, seen in >5% of subjects, were laboratory findings consistent with hemolysis, headache, elevated body temperature, anemia, nausea, and vomiting. A serious adverse reaction was aseptic meningitis syndrome.

In clinical studies of patients being treated for CIDP, the most common reactions, observed in >5% of subjects, were headache, asthenia, hypertension, nausea, pain in extremity, hemolysis, influenza-like illness, leukopenia, and rash.  Serious adverse reactions were hemolysis, exacerbation of CIDP, acute rash, increased diastolic blood pressure, hypersensitivity, pulmonary embolism, respiratory failure, and migraine.

Treatment with Privigen might interfere with a patient’s response to live virus vaccines and could lead to misinterpretation of serologic testing. In patients over 65 and those at risk of renal insufficiency, do not exceed recommended dose and infuse at the minimum rate practicable.

Full Privigen prescribing information, including the complete boxed warning, can be found at

About CSL Behring
CSL Behring is a global biotherapeutics leader driven by its promise to save lives. Focused on serving patients’ needs by using the latest technologies, we develop and deliver innovative therapies that are used to treat coagulation disorders, primary immune deficiencies, hereditary angioedema, inherited respiratory disease, and neurological disorders. The company’s products are also used in cardiac surgery, organ transplantation, burn treatment and to prevent hemolytic disease of the newborn.

CSL Behring operates one of the world’s largest plasma collection networks, CSL Plasma. The parent company, CSL Limited (ASX:CSL), headquartered in Melbourne, Australia, employs nearly 20,000 people, and delivers its life-saving therapies to people in more than 60 countries. For more information visit and follow us on


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Charity Navigator Names GBS|CIDP Foundation as ‘Charity Worth Watching’

10 Charities Worth Watching

Many of America’s most effective charities are also household names. But some well-known charities are less effective than you’d think, while a number of lesser known charities are truly exceptional. These 10 charities all operate on less than $2 million a year, but they all earn a four-star rating from Charity Navigator. We encourage you to learn more about them.

Rank Charity Overall Score
1 Just Detention International 100.00
2 Boys & Girls Clubs of Nassau County Foundation 100.00
3 GBS/CIDP Foundation International 100.00
4 Environmental and Energy Study Institute 100.00
5 Boys & Girls Clubs of Indian River County 100.00
6 Arthritis National Research Foundation 100.00
7 Family Health Partnership Clinic 99.80
8 Boy Scouts of America, Long Beach Area Council 99.67
9 USO of Missouri 99.63
10 Center for Responsive Politics 99.58

View on Charity Navigator

Announcing the 2017 GBS|CIDP Foundation Grant Awardees

2017 GBS|CIDP Foundation Grant Awardees

(#1) Title of the project: Enhance Peripheral Nerve Repair by Modulating Macrophage Subsets


Gang Zhang, M.D; Ph.D
Assistant Professor of Neurology
University of Texas, Health Sciences Center at Houston


Intravenous immunoglobulin (IVIg) is now the first-line therapy for Guillain-Barré syndrome (GBS). However, there are many disadvantages including high cost, supply shortages, and multiple side effects that are usually associated with high dose and long infusion time of IVIg. Therefore, new therapeutic strategies that can limit the nerve injury during the acute phase of the disease and enhance repair during recovery period are highly desirable. It is in this context we propose a novel strategy of modulating macrophage polarization (promote M2 polarization) for treating GBS.

(#2) Title of the project: Probing the role of skin biopsy in CIDP nodo-paranodopathies


Raffaella Lombardi, B.S., Fondazione IRCCS Instituto Neurologico C. Besta, Milan, Italy


Jerome Devaux, Ph.D,

Diego Franciotta, M.D., Ph.D,

Giuseppe Lauria, M.D.1


IgG4 antibodies against some proteins at the node of Ranvier, anti-neurofascin 155 (Nfasc155) or anti-contactin 1 (CNTN1) have recently been identified in the serum of a subset of CIDP patients. Identification of specific changes in myelinated dermal skin nerves and correlation with clinical course and serological data are unknown. We aim addressing these issues to provide new biomarkers of disease activity and patient stratification. 

(#3) The Ernest Hayden Award:
Title of the project: Flavivirus and Arbovirus associated Guillain-Barré syndrome in South and South-East Asia.


Dr. Thirugnanam Umapathi

Department of Neurology, National Neuroscience Institute (NNI), Singapore,


Dr Say Saysavath, Mittaphab Hospital; Dr Somchit Vorachit, Setthathirath Hospital,Vientiane,

Laos. Dr Hoang Nghia, Vietnam 175 Hospital, Ho Chi Minh City, Vietnam,Dr Surat Tanprawate, Chiangmai University, Thailand, Dr Mohammad Wasay; Dr Sara Khan, Aga Khan University, Karachi, Pakistan, Dr Terrence Thomas, KKH Children’s Hospital, Singapore,Dr Hugh Willison, Glasgow University, UK Dr Bart Jacobs, Erasmus University, Rotterdam, Netherlands

Dr Ooi, Eng Eong, Duke-NUS, Singapore, Dr Lisa F.P. Ng, A*Star Singapore.

Lao-Oxford-Mahosot Hospital Wellcome Trust Research Unit’s (LOMWRU), Vientiane, Laos


This is a prospective, observational multi-center study of GBS in six S SEA countries. GBS patients and hospital, community controls will be tested for evidence of recent infection and serological response to previous/coinfections with flavi/arbovirus.

For information regarding Grants please contact