Neuropathy Action Foundation

TO EDUCATE THE GENERAL PUBLIC, HEALTHCARE PROVIDERS, PATIENTS AND DECISION MAKERS ON WHAT NEUROPATHY IS AND TO HELP NEUROPATHY PATIENTS OBTAIN ACCESS TO INDIVIDUALIZED TREATMENTS.

FOLLOWING A SUCCESSFUL FIVE YEAR MULTIFOCAL MOTOR NEUROPATHY MMN EDUCATION CAMPAIGN WHICH RESULTED IN THREE PATIENT VIDEOS, THOUSANDS OF NEW GRASSROOTS ADVOCATES, AND OVER 1 MILLION AD IMPRESSIONS WE SHIFTED OUR EDUCATIONAL EFFORTS TO CHRONIC INFLAMMATORY DEMYELINATING POLYNEUROPATHY (CIDP). IN 2021, THE NEUROPATHY ACTION FOUNDATION CONDUCTED AND ANNOUNCED THE RESULTS FROM AN INTERNATIONAL CHRONIC INFLAMMATORY DEMYELINATING POLYNEUROPATHY (CIDP) QUALITY OF LIFE (QOL) PATIENT SURVEY. THE SURVEY FOCUSED ON THREE PRIMARY AREAS: TIMELY AND ACCURATE DIAGNOSIS, EFFICACY OF TREATMENT, AND THE IMPACT OF THE DISEASE ON PATIENTS QUALITY OF LIFE. THIS SURVEY IS IMPORTANT BECAUSE EARLY AND ACCURATE DIAGNOSIS CAN MEAN THE DIFFERENCE BETWEEN CIDP PATIENTS BEING SUCCESSFULLY MANAGED OR BECOMING PERMANENTLY DISABLED. TIMELY TREATMENT CAN MAKE A BIG DIFFERENCE IN PATIENTS LIVES. THE NAF BELIEVES THESE SURVEY RESULTS WILL INCREASE AWARENESS AND ACTION AMONG PROVIDERS, THE PUBLIC AND PUBLIC POLICY OFFICIALS. THE MAJORITY OF THE 297 PARTICIPANTS COMPLETING THE SURVEY WERE MALES (62%) FROM THE UNITED STATES (88%) WITH RESPONDENTS FROM FIVE OTHER COUNTRIES CONTRIBUTING TO THE RESULTS. WHILE 70% OF RESPONDENTS REPORTED THAT THEY WERE DIAGNOSED BETWEEN THE AGES OF 41 AND 65 YEARS OLD, MORE THAN 54% OF THOSE COMPLETING THE SURVEY REPORTED THAT IT TOOK MORE THAN ONE YEAR TO BE ACCURATELY DIAGNOSED. THE MAJORITY OF THE MISDIAGNOSES WERE MADE BY NEUROLOGISTS (60%) AND FAMILY CARE PROVIDERS (21%). THESE RESULTS DEMONSTRATED THAT IT IS VERY CLEAR THAT WE NEED TO DO A BETTER JOB AT ACCURATELY DIAGNOSING THESE PATIENTS. THE SOONER WE CAN IDENTIFY CIDP, THE SOONER WE CAN START INDIVIDUALS ON THE PROPER THERAPY, ALLEVIATE THEIR SYMPTOMS AND IMPROVE THEIR LIVES. WHEN ASKED ABOUT TREATMENT OPTIONS, 76% REPORTED RECEIVING INTRAVENOUS IMMUNOGLOBULIN (IVIG) AND 11% REPORTED RECEIVING SUBCUTANEOUS IMMUNOGLOBULIN (SCIG). A REDUCTION IN SYMPTOMS WAS REPORTED WITHIN THREE MONTHS OF THEIR FIRST IG TREATMENT BY 68% OF RESPONDENTS. ONLY 7% REPORTED THAT IG DID NOT HELP THEM MANAGE THEIR SYMPTOMS. IF RECOMMENDED BY THEIR NEUROLOGIST, 67% WOULD CONSIDER SCIG TREATMENT. INTERRUPTIONS IN TREATMENT DUE TO COVID-19 WERE EXPERIENCED BY 39% OF THE RESPONDENTS. NEARLY 30% OF ALL PARTICIPANTS STATED THAT CIDP OFTEN OR ALWAYS INTERFERES WITH THEIR EMPLOYMENT AND 51% SAID IT IMPACTS THEIR QUALITY OF LIFE. LOSS OF BALANCE (51%) AND WEAKNESS IN LEGS (49%) WERE THE MOST COMMON SYMPTOMS BEFORE STARTING TREATMENT. CIDP HAS A DIRECT IMPACT THE PARTICIPANT'S EMOTIONAL WELLBEING. FATIGUE WAS REPORTED BY 43% OF THE RESPONDENTS. SOME 46% REPORTED FEELING DEPRESSED AND 28% OF THOSE COMPLETING THE SURVEY SAID THEY HAD TIME WHEN THEY FELT HOPELESS. FEELING EMBARRASSED BY THEIR PHYSICAL LIMITATIONS WAS A CONCERN FOR 49% OF RESPONDENTS. THE SURVEY RESULTS ILLUSTRATE THE COMPLEXITY OF CIDP AND THE IMPACT IT CAN HAVE ON PEOPLES LIVES. THE GOOD NEWS IS THAT THE DATA ALSO SHOWS THAT TREATMENT HELPS MANY INDIVIDUALS.OTHER 2021 SERVICES PROVIDED AND ACCOMPLISHMENTS INCLUDE:THE NAF CONTINUED ITS BI-MONTHLY PATIENT VOICE NEWSLETTER.HELPED OVER 175 PATIENTS WITH MEDICATION ACCESS ISSUES.ANSWERED OVER 1,000 PATIENT EMAILS/PHONE CALLS AND EITHER EMAILED OR MAILED OVER 500 INFORMATIONAL BROCHURES TO PATIENTS ACROSS THE U.S.CONTINUED A DIABETIC PERIPHERAL NEUROPATHY (DPN) AWARENESS CAMPAIGN IN SPANISH AND ENGLISH.THROUGH OUR WEBSITE (WHICH IS CONSTANTLY UPDATED) AND PATIENT BROCHURES THE NAF REACHED MILLIONS OF PATIENTS AND INTERESTED PARTIES OBTAIN THE NECESSARY RESOURCES, INFORMATION AND TOOLS TO ACCESS INDIVIDUALIZED TREATMENT TO IMPROVE THEIR QUALITY OF LIFE.CONTINUED TO PARTNER WITH NUMEROUS STATE AND NATIONAL COALITIONS AND ORGANIZATIONS TO ENSURE INDIVIDUALIZED CARE AND ACCESS TO TREATMENTS AND MEDICATIONS THROUGH POLICY, LEGISLATIVE, GRASSROOTS AND TRADITIONAL/SOCIAL MEDIA EFFORTS.