 The Institute for Clinical and Economic Review (ICER) recently assessed two treatments for spinal muscular atrophy (SMA), a rare and deadly genetic condition impacting 1 in 11,000 newborns each year.[1] In the absence of therapy intervention, death or the need for constant ventilation to breathe before the age of two years is the outcome for more than 90% of individuals diagnosed with SMA Type 1. SMA is the number one genetic cause of death for infants.
 In This Week’s Issue:
1. The Perils of QALYs Event at the Coelho Center, click here to read more. 2. Coelho Center Celebrates its First Year, click here to read more about the Center. 3. You're Invited! Value Our Health Briefings on Capitol Hill, see below for details. 4. ICER Seeks Public Input for 2020 Value Assessment Framework, click here for more information and to comment. 5. International News: What Happens in Countries Using QALYs and Cost-Based Thresholds to Determine Coverage? See below for more. 6. ICER Studies: Type 2 Diabetes, Arthritis, Cardiovascular Disease, Duchenne Muscular Dystrophy click here to provide patient input. 7. ISPOR Conference Discussion of the Shortfalls of QALYs, click here to read more. 8. NVHR Hepatitis C Patient Summit, click here to apply to the patient summit. 9. Submit 2019 Fly-ins, Advocacy Days, and Conferences to Democratic Caucus, click here to submit your events. 10. Upcoming Events and Webinars, see details below. 11. Medical Journal Articles, see details below. 12. AHRQ Effective Program Updates, see details below.  In This Week’s Issue:
1. You're Invited! The Perils of QALYs Event at the Coelho Center in Los Angeles TODAY, click here for more information and click here to RSVP. 2. PIPC Submits Comment Letter to ICER on Peanut Allergy Draft Evidence Report, click here to read the letter. 3. ICER Seeks Public Input for 2020 Value Assessment Framework, click here for more information and to comment. 4. International News: What Happens in Countries Using QALYs and Cost-Based Thresholds to Determine Coverage? See below for more. 5. ICER Studies: Type 2 Diabetes, Arthritis, Cardiovascular Disease, Duchenne Muscular Dystrophy click here to provide patient input. 6. Advocacy for Payer Consideration of Patient Input at AMCP, click here to read the article. 7. WaPo: For Patients, a Caregiver’s Compassion is Essential, click here to read the article. 8. PCORI Engagement In Health Research Literature Explorer, click here to use the tool. 9. NVHR Hepatitis C Patient Summit, click here to apply to the patient summit. 10. AUCD: Submit a Proposal for 2019 Conference! Click here for more information. 11. Submit 2019 Fly-ins, Advocacy Days, and Conferences to Democratic Caucus, click here to submit your events. 12. Upcoming Events and Webinars, see details below. 13. Medical Journal Articles, see details below. 14. AHRQ Effective Program Updates, see details below.  In This Week’s Issue:
1. PIPC Submits Comment Letter to ICER on Peanut Allergy Draft Evidence Report, click here to read the letter. 2. ICER Seeks Public Input for 2020 Value Assessment Framework, click here for more information and to comment. 3. You're Invited! The Perils of QALYs Event at the Coelho Center in Los Angeles May 20, click here for more information and click here to RSVP. 4. Policy Briefing in Sacramento on May 15: Are Value Assessments In Healthcare a New Form of Discrimination?, click here for more information and click here to RSVP. 5. International News: What Happens in Countries Using QALYs and Cost-Based Thresholds to Determine Coverage? See below for more. 6. ICER Studies: Type 2 Diabetes, Arthritis, Cardiovascular Disease, Depression, MS, Duchenne Muscular Dystrophy, Peanut Allergy, click here to provide patient input. 7. PCORI Board of Governors Meeting, click here to view the agenda and click here to register and attend the meeting by teleconference. 8. National Health Council on Measuring Patient Experience, click here to read the blog post and click here to watch the webinar. 9. Friends of PCORI Reauthorization Letter of Support, see below for details. 10. CMS Webinar: Reintroducing the eCQI Resource Center, click here to register. 11. NVHR Hepatitis C Patient Summit, click here to apply to the patient summit. 12. AUCD: Submit a Proposal for 2019 Conference! Click here for more information. 13. Submit 2019 Fly-ins, Advocacy Days, and Conferences to Democratic Caucus, click here to submit your events. 14. Upcoming Events and Webinars, see details below. 15. Medical Journal Articles, see details below. 16. AHRQ Effective Program Updates, see details below.  In This Week’s Issue:
1. ICER Seeks Public Input for 2020 Value Assessment Framework, click here for more information and to comment. 2. You're Invited! The Perils of QALYs Event at the Coehlo Center in Los Angeles May 20, click here for more information and click here to RSVP. 3. Policy Briefing in Sacramento on May 15: Are Value Assessments In Healthcare a New Form of Discrimination?, click here for more information and click here to RSVP. 4. Last Call for Signatures on Letters supporting PCORI Reauthorization!, email [email protected] to sign on and click here to view updates and access advocacy tools related to PCORI reauthorization. 5. PIPC Advises California LAO to Avoid Discriminatory Value Assessment Metrics, click here to read the letter. 6. International News: What Happens in Countries Using QALYs and Cost-Based Thresholds to Determine Coverage? See below for more. 7. ICER Studies: Type 2 Diabetes, Arthritis, Cardiovascular Disease, Depression, MS, Duchenne Muscular Dystrophy, Peanut Allergy, click here to provide patient input. 8. NVHR Hepatitis C Patient Summit, click hereto apply to the patient summit. 9. NPC: Public Input Key for Improving Value Assessment, click here to read the article. 10. AAMC on PCORI's Contributions, click here to read the article. 11. AUCD: Submit a Proposal for 2019 Conference! Click here for more information. 12. Submit 2019 Fly-ins, Advocacy Days, and Conferences to Democratic Caucus, click here to submit your events. 13. Upcoming Events and Webinars, see details below. 14. Medical Journal Articles, see details below. 15. AHRQ Effective Program Updates, see details below. |
