National Education Day

Transcription

1 Presentation to National Education Day September 17, 2016

2 Mission Statement Founded in 1980, the Immune Deficiency Foundation is the national patient organization in the United States dedicated to improving the diagnosis, treatment and quality of life of persons with primary immunodeficiency diseases through advocacy, education and research

3 Sources of Revenue Industry contributions and grants Individual contributions Walks and other special events Government grants and contract revenue

4 Trends Better understanding of PI More PI genetic defects being discovered Increased focus on comorbidities Increased need for patient & provider education Barriers to care Insurance Cost increases and shifting to patients Restrictive formularies, sites of care, narrow networks access to specialists Reimbursement reductions CMS Drug Pricing

5 Trends (continued) Patient-centered care Precision Medicine: PCORI, FDA, CMS, NIH Patients want more customized resources Patient reported outcomes Patient surveys, IDF ephr, IDF PI CONNECT New Products and technologies Better diagnostics More choice in IG therapy PI Patients need for antibody protection Patient friendly infusion technology

6 2016 IDF Strategic Directions Reach more patients IDF Outreach Initiative and other outreach to medical providers Patient education meetings and events throughout the country Expanded Volunteer Network Ever Increasing Online Presence IDF Direct (Newly diagnosed patients) Increase awareness and understanding of PI Educational materials and programs for patients and medical professionals Increased awareness efforts through Walk for PI and IDF Volunteers IDF Plasma Partners Program Improve access to quality care Public Policy Advocacy Patient Advocacy IDF ephr

7 2016 IDF Strategic Directions (continued) Research Surveys More publications for a stronger impact USIDNET and IDF PI CONNECT Interoperability and improvements for disease specific groups PCORI Collaborations with PIDTC and CIS IDF Research Fund Increase and diversify sources of support Walk for PI Engage medical facilities Major Gifts Research activities

8 IDF in 2021 Increase the number of patients connected to IDF to 25,000 or 10% of prevalence. (Current number of known patients is 17,000+) Increased disease-specific focus Enhanced outreach and partnership with physician offices through IDF Outreach Initiative, increased volunteer presence, visibility of Walks, involvement in patient meetings Patients with PI have improved access to affordable expert care. All states screening for SCID, and the KREC test for XLA added to the National Newborn Screening Panel

9 IDF in 2021 (continued) Through IDF research initiatives, provide robust data to better understand the patient experience, with the goal of improved patient care. Consistent funding for our research infrastructure, PI CONNECT, IDF ephr, USIDNET Registry, Surveys and Research Fund Assure IDF continues to be the trusted resource for patient information through continuously improved accessibility, educational programs and materials. Increased sources of support: $1,000,000 net from IDF Walks, developed partnerships with more organizations that provide PI medical services, strengthened IDF Legacy Society and major gift fundraising.

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11 Increasing Our Reach IDF Website Primaryimmune.org ,219,853 sessions 62.5% increase over 2014 IDF ADVOCATE Printed Newsletter % increase over 2014 (current circulation 40,000+) Primary Immune Tribune enewsletter % increase over 2014 (current circulation 31,500+) Social Networks % increase of followers over 2014: IDF Friends 25% IDF Common Ground 38% Facebook 28% Twitter 49% Instagram 274% LinkedIn 150% 12 New epublications for Kindles and Tablets New International Section of website highlighting translations

12 April - National PI Awareness Month April World PI Week Combined efforts of CIS and IDF Invited all to THINK ZEBRA! and wear zebra Community shared the IDF Learn More poster, contacted local media, reported activities and submitted selfies TZ the IDF Zebra continues to create awareness across the country

13 2016 Meetings Around the Country 2 IDF Retreats 2 Teen Escapes 29 State-Level Patient Education Meetings Dozens of Local Get Connected Meetings

14 Boston, MA June 17-19, 2016 Salt Lake City, UT August 19-21, 2016 Total Attended = 268 Total Attended = 175 Outstanding educational presentations and life management sessions Strong youth and teen program Sponsors have the opportunity to attend and exhibit Informative volunteer sessions Special CGD programs Innovative Young Adult Program (Boston) Young adults and older teens with SCID Session (Salt Lake City)

15 IDF National Conferences 1,366 Attendees largest ever! 12 Countries 39 States 69 Speakers 182 Attendees in the Youth Program 98% Would Recommend the IDF Conference 98% Said the Exhibitors were a Valuable Addition Planning IDF 2017 National Conference Anaheim Marriott, Anaheim, CA, June 15 17, 2017 Increase focus on disease-specific sessions Create new sessions and activities

16 2015 National Conference

17 IDF Teen Program IDF Teen Escape Develop coping skills, promote friendships, receive guidance on living with PI. Northbrook, IL July Charlotte, NC July IDF Common Ground App was launched in April in 2016 Life Stage section on website Young Adult Program Young Adult Webinar Series Feedback and discussion session at IDF Retreat Newton, MA June 17 19,

18 IDF Volunteer Network Local Efforts, Nationwide Impact Dedicated volunteer manager Designed online and print training modules with orientation for all volunteers, and position specific guides and training Expanded volunteer opportunities Health Access Advocates IDF Walk for PI - Advisors, Planning Team Members, Day-of-Walk Volunteers Event Facilitators Peer Support Coaches Plasma Center Visitors Teen Council Members IDF Liaisons IDF Get Connected Leaders Office Assistants

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20 IDF Walk for PI: 2015 Boston - $34, walkers Cleveland - $28, walkers Minneapolis - $31, walkers Philadelphia - $30, walkers Chicago - $66, walkers New York City - $118, walkers Los Angeles - $41, walkers Houston - $37, walkers Fort Lauderdale - $49, walkers Community Walks - $12,943 Virtual Walk - $8,912 Total Raised by Walkers - $461,576 3,524 walkers Total Raised By Walkers & Sponsors: $1,000,000+

21 IDF Walk for PI Walk Locations Cleveland Boston Minneapolis St. Louis Philadelphia Chicago New York City Atlanta Charlotte, NC Los Angeles Houston Fort Lauderdale September 25 October 2 October 2 October 9 October 16 October 23 October 23 October 29 November 5 November 6 November 13 November 20 Community Walks: Blountville, TN September 17 Omaha, NE September 18

22 IDF Plasma Partners Program Purpose Create awareness of PI Shows relationship between patients, donors and employees in plasma collection centers Raise funds for IDF programs

23 IDF Medical Programs IDF Consulting Immunologist program - Opportunity to consult with expert clinical immunologists IDF & USIDNET LeBien Visiting Professor Program - Provides teaching hospitals with an expert clinical immunologist Exhibit at medical conferences throughout the country IDF Nurse Advisory Committee - Resource for nurses treating patients with PI IDF Medical Advisory Committee - Support the mission of IDF through the development of science based standards

24 The United States Immunodeficiency Network (USIDNET) oversees a Registry of Patients with PI. Funded by NIAID A program of IDF Physician-validated clinical data on over 5,800 patients with PI Laboratory results Genetic and molecular information Diagnostic criteria Longitudinal Data Incumbent upon clinicians updating patient records over time Approved for 5 more years of funding by NIAID!

25 Electronic personal health record designed specifically for the PI community Transforming how patients manage their health Track symptoms, Ig infusions, medications, log health information Access via computers, tablets, phones Features: Syncs with Microsoft HealthVault Set health/fitness goals and track progress Connection to PI CONNECT ephr app Quality of Life Survey Health Snapshots Health Calendar IDF ephr App

26 IDF PI CONNECT is advancing research! Funded through Patient-Centered Outcomes Research Institute (PCORI)

27 A collaboration of patients and researchers for primary immunodeficiencies Empowers users to help others living with PI by logging experiences on the IDF ephr Access to an exclusive research forum where patients can discuss and offer opinions about PI research and participate in webinars IDF ephr patient de-identified data becomes part of the USIDNET patientconsented registry All of this can lead to improved diagnosis and treatment of PI 2,906+ users in ephr 1,840+ users in PI CONNECT

28 PROMIS-29 QoL Survey Originally launched in November 2015 Ran for 4 weeks 311 adults participated Basis for CIS Abstract Overall, PI patients demonstrated significantly worse HRQoL scores compared to the general population. Women reported poorer HRQoL scores than men and patients aged 35 to 44 reported the lowest HRQoL scores. Reopened every 6 months, patients prompted to take. Longitudinal data integrated into USIDNET Patients get a custom report upon completion Patients reported higher anxiety, depression, fatigue and pain interference along with lower physical function and social roles Next step: Does IgG level correlate?

29 Patient Advocacy Steady increase of requests to IDF Expect this trend to continue Inquiries related to diagnosis, treatment, health insurance, peer support, physician location and literature requests The top reasons that patients contact IDF are for: Education Medical or treatment questions Locating an immunologist in their area Health insurance problems Volunteering

30 IDF Patient Advocacy Reason For Call Report: January to December Service Type Patient Education Total Insurance Co-Pay Assistance Premium Assistance General Insurance Issues Medicare Insurance Issues Medicaid Insurance Issues Uninsured Insurance Denials for Treatment Disability IDF Patient Advocacy Reason For Call Report: January to December Manufacturers Compassionate Care Program Total Non-insurance Product Choice Problems Identifying Less Expensive Options Employment Discrimination Diagnosis/Locating a Specialist Medical or Treatment Questions Peer Support Volunteer Network School Issues Consulting Immunologist (discussed with patient) Other GRAND TOTAL Unique Patient Number Consulting Immunologist Requests

31 Public Advocacy

32 2016 IDF Advocacy Day April Approximately 75 people including patients, family members and friends attended 135 meetings Focus of meetings was the proposed Medicare Part B Drug Protocol Demonstration

33 IDF Advocacy Initiatives To Address Access to Care Barriers IVIG Medicare Demonstration Project Medicare Part B Drug Payment Model AWP to ASP +6 (subcutaneous) Cadillac Tax Repeal Specialty Tiers Co-insurance Biosimilars ACA implementation Patient Assistance Legislation SCID Newborn Screening

34 42 States Currently Screening for SCID 88% of all newborns in the U.S. are receiving SCID screening

35 Newborn Screening for Severe Combined Immune Deficiency IDF advocates for SCID inclusion on their newborn screening panel of every state Many states use IDF educational materials in their follow up programs APHL SCID Video SCID A Family s Journey Through Isolation

36 Highlights include: National Patient Surveys (1996, 2002, 2007, 2012) National Treatment Surveys (1997, 2003, 2008, 2013) 2009 IDF Patient Survey (Web-based) Prevalence Survey (2005) Survey Research Better Information for Better Outcomes More than 40 major surveys of patients & medical professionals since 1995 National Internet Treatment Survey of PIDD in the U.S. (2010) Medicare Access to Care Surveys: Patients, Physicians, Hospital Pharmacist Directors (2006, 2007) Physician Surveys Pediatrician (2007), Family Practitioner (2009), Pulmonologist (2011) Use of IVIG in Treatment of PI IDF and AAAAI (2009) Early vs. Delayed Diagnosis of SCID (2010) Primary Immunodeficiency & Women s Reproductive Health Survey (2012) Health Insurance & Primary Immunodeficiency ( )

37 Average Time to Diagnosis from Symptom Onset: All Diagnoses , ,2 12,4 8 6 Median = 6.0 Median = Median = (N= 1,397) (N= 1,137) (N= 1,413) Sources: 2002, 2007 & 2012 IDF National Patient Surveys

38 Age at Diagnosis Patients Currently Receiving Ig Therapy % 30% 32% 30% 25% 20% 24% 20% 25% 25% 22% 18% 25% 15% 10% 5% 0% 11% 10% 10% 9% 8% 7% 6% 5% 4% 5% 2% 2% Sources: 2002, 2007 & 2012 IDF National Patient Surveys

39 Health Status Improves after Ig Therapy 50% Prior to diagnosis only 15% good or better After Diagnosis 61% good or better Prior to diagnosis 40% Past 12 months 33% 34% 30% 23% 24% 26% 25% 20% 10% 0% 9% 10% 5% 5% 1% 2% 3% 1% Excellent Very good Good Fair Poor Very Poor Blank Q9. Would you describe his/her health in the 12 months prior to diagnosis..? BASE: Those who are currently using IVIG or SCIG Therapy N=1,428 Q61. Would you describe his/her health in the past 12 months as..? BASE: Those who are currently using IVIG or SCIG Therapy N=1,428 Source: 2013 IDF National Patient Treatment Survey

40 Patients in the General Community: A National Probability Survey of the Prevalence of Patients diagnosed with PI IDF Prevalence Survey National telephone survey of 10,000 households 1 in 1,200 persons diagnosed with PIDD Estimate of 250,000 PI in the U.S. 95% confidence level around the estimate suggests 152,000 to 361,000 diagnosed PIDD in the U.S. 57% of the patients in the survey had a diagnosis for which Ig therapy is indicated. (66% if IgG Subclass Deficiency is included) Only 22% of antibody deficient patients currently treated with IVIG

41 Recommend IgG Therapy for All or Most Patients by Diagnosis: Immunologist, Pediatrician, Family Practice & Pulmonologist Comparisons 100% 92% 100% 98% 90% 89% 80% 60% 80% 74% 66% 63% 70% 51% Immunologist Pulmonologist Pediatrician Family Practice 40% 35% 20% 0% SCID XLA CVID Q. Would you recommend IVIG/IgG Replacement therapy for all, most, some or few to no patients with. All or most Sources: IDF-AAAAI 2006 Survey of the AAAAI membership; IDF 2008 Survey of Pediatricians; IDF 2009 Survey of Family Physicians

42 IDF Surveys of Specialists and Primary Care Physicians: American Academy of Allergy, Asthma and Immunology (AAAAI), Pediatricians, Family Practice & Pulmonology Survey Year Mode Incentive Responses AAAAI 2006 Internet No 405 Pediatricians 2008 Mail Yes 560 Family Practice 2009 Mail Yes 528 Pulmonology 2011 Mail Yes 499

43 IDF Health Insurance Surveys: 2014 & Web-based Survey Up to 60 questions (depending on responses) In the field: 11/14/2014 to 12/4/2014 Over 1,500 completed, unduplicated respondents completed the survey 2015 Web-based Survey Up to 50 questions (depending on responses) In the field: 12/04/2015 to 12/31/2014 Over 1,600 completed, unduplicated respondents completed the survey

44 Delayed or Skipped Ig Therapy in Past Year 32% Yes 30% Yes 68% No 70% No 2014 Top 5 reasons for Skip % Problems with health insurance 41 Scheduling conflict 28 Too sick for therapy 20 My cost for therapy too expensive 12 Side-effects were/are too great Top 5 reasons for Skip % Problems with health insurance 36 Scheduling conflict 30 Too sick for therapy 17 Side-effects were/are too great 10 My cost for therapy too expensive 8 Source: IDF 2014 and 2015 Health Insurance Survey Since January 2014/2015, has there been a time when the person skipped or delayed their Ig therapy? Base: Current Ig users, 2014, N=1,183; 2015, N=1,254

45 International Patient Organisation for Primary Immunodeficiencies (IPOPI) IPOPI is the association of national patient organisations dedicated to improving awareness, access to early diagnosis and optimal treatments for primary immunodeficiency patients worldwide

46 55 National Member Organisations

47 Board of Directors Jose Drabwell, Chair (UK) Martine Pergent, Vice-Chair (France) Christine Jeffery, Treasurer (Australia) Marcia Boyle (USA) Adrian Gorecki (Poland) Dragana Koruga (Serbia) Bruce Lim (Malaysia) Roberta Pena (Argentina) Violetta Kozhereva (Russia) Staff Johan Prévot Executive Director Leire Solis, Health Policy & Advocacy Manager Magda Lourenço, Communications Project Manager Carla Morgado, Executive Assistant Carol Tavener & Clare Glynn, Fincances Medical Advisory Panel Prof. Bobby Gaspar, Chair (UK) Dr. Nizar Mahlaoui, Vice Chair (France) Dr. Adli Ali (Malaysia) Dr. Tajed Avcin (Slovenia) Prof. Aziz Bousfiha (Morocco) Prof. Andrew Cant (UK) Dr. Monika Esser (South Africa) Prof. Amos Etzioni (Israel) Prof. Alain Fischer (France) Dr. José Franco (Colombia) Prof. Antonio Condino Neto (Brazil) Prof. Luigi Notarangelo (Italy/USA) Prof. Surjit Singh (India) Dr. Joanne Smart (Australia) Prof. Martin Van Hagen (The Netherlands) Prof. Klaus Warnatz (Germany)

48 Objectives

49 IPOPI NMO Support Programmes and Toolkits Awareness Campaign Toolkit Broadcast Guideline Government Fact Sheet Media Guidelines Template Celebrity letter Corporate Sponsorship Guideline Celebrity guidelines Family/School guidelines PID leaflet guideline Facts for the Medical Community Guideline World PI Week Toolkit NMO Website Toolkit Advocacy and Media Training Toolkit Online resources: IPOPI website contains a wealth of other resources (publications, position statements, latest news, IG database..) Press conference check list Effective use of the media Government outreach Broadcast guideline Celebrity guideline Medical profession factsheet Government relations: making your case effectively Government factsheet Media guideline World PI Week toolkit

50 IPOPI Biennial Meetings with Past Meetings: 1992 Lugano, Switzerland 1994 Sitges, Spain 1996 Goteborg, Sweden 1998 Rhodos, Greece 2000 Geneva, Switzerland 2002 Weimar, Germany 2004 Versailles, France 2006 Budapest, Hungary 2008 Den Bosch, Holland 2010 Istanbul 2012 Florence 2014 Prague Upcoming Meeting: 2016 Barcelona

51 Website IPOPI Website provides efficient online resource for PID patients and stakeholders and increased visibility (5-fold increase in visits & page views in last 2 years) New Social Media Tools

52 Patient Information Leaflets

53 Merci! Thank You! For more info visit