​Washington, D.C. – Today, the Partnership to Improve Patient Care and 37 leading patient and disability organizations submitted a comment letter to the Institute for Clinical and Economic Review (ICER) on their 2020 Value Assessment Framework. Given the serious concerns that stakeholders have raised with ICER’s flawed methodology, the letter urges ICER to put patients and people with disabilities at the center of all assessments to ensure they: (1) are transparent, (2) align with innovative leaders in the field, and (3) do not rely on the use of quality-adjusted life years (QALYs) and other discriminatory metrics that treat patients as averages. 

In This Week’s Issue:
 
1. Deadline TODAY: ICER Seeks Public Input for 2020 Value Assessment Framework - Contact PIPC to Sign On!, click here to read more and see below for details.
2. You're Invited! Value Our Health Briefings on Capitol Hill, see below for details.
3. PIPC Chairman Coelho and Doctors Caucus Co-Founder Dr. Phil Gingrey on PCORI, click here to read the article.
4. NAMI's Andrew Sperling Highlights Concerns with ICER's Review of Treatment-Resistant Depression, click here to read the interview.
5. PIPC Blog: ICER's SMA Study Falls Short on Data Accuracy, click here to read the full post.
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, Duchenne Muscular Dystrophy click here to provide patient input.
8. AACR Briefing on e-Cigarettes and Nicotine Addiction, click here for more information.
9. Applying Real-World Evidence to Beat Cancer, click here to read the article.
10. Submit 2019 Fly-ins, Advocacy Days, and Conferences to Democratic Caucus, click here to submit your events.
11 Upcoming Events and Webinars, see details below.
12. Medical Journal Articles, see details below.
13. AHRQ Effective Program Updates, see details below. 

In This Week’s Issue:
 
1. PIPC Blog: ICER's SMA Study Falls Short on Data Accuracy, click here to read the full post.
2. ICER Seeks Public Input for 2020 Value Assessment Framework - Contact PIPC to Sign On!, click here to read more and see below for details.
3. Shared Decision-Making: Sign Comment Letter on Interoperability Rule, see below for details.
4. The Perils of QALYs Event at the Coelho Center, click here to read more.
5. Coelho Center Celebrates its First Year, click here to read more about the Center.
6. You're Invited! Value Our Health Briefings on Capitol Hill, see below for details.
7. International News: What Happens in Countries Using QALYs and Cost-Based Thresholds to Determine Coverage? See below for more. 
8. ICER Studies: Type 2 Diabetes, Arthritis, Cardiovascular Disease, Duchenne Muscular Dystrophy click here to provide patient input.
9. AACR Briefing on e-Cigarettes and Nicotine Addiction, click here for more information.
10. STAT Op-Ed: Critics of SMA Gene Therapy are Missing the Point, click here to read the article.
11. PPVF Initiative Releases Survey Results on SDM Tool, White Paper on Patient-Centered Value Assessment, click here to see the survey results and click here to read the white paper.
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. 

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 Julia.Friedland@dbr.com 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.  

In This Week’s Issue:
 
1. 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.
2. 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.
3. PIPC Advises California LAO to Avoid Discriminatory Value Assessment Metrics, click here to read the letter.
4. National Partnership for Women & Families Publishes Consensus-Driven Framework for Addressing Social Determinants of Health, click here to view the framework on Medium and here to link to the printable version. 
5. MacIver Institute Issue Brief on the Problems with QALYs, click here to read the brief.
6. Op-Ed: Let’s Keep Patient-Centered Solutions at the Forefront of Health Care Policies, click here to read the op-ed.
7. PIPC Comments on ICER's Treatment-Resistant Depression Study, click here to read the letter.
8. PIPC Chairman Tony Coehlo Headlines Headache and Migraine Policy Forum Panel, click here to read more.
9. International News: What Happens in Countries Using QALYs and Cost-Based Thresholds to Determine Coverage? See below for more. 
10. ICER Studies: Type 2 Diabetes, Arthritis, Cardiovascular Disease, Depression, MS, Duchenne Muscular Dystrophy, Peanut Allergy, click here to provide patient input.
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.  

In This Week’s Issue:
 
1. PIPC Comments on ICER's Treatment-Resistant Depression Study, click here to read the letter.
2. PIPC Chairman Tony Coehlo Headlines Headache and Migraine Policy Forum Panel, click here to read more.
3. IHP Article: Patient Advocates are Concerned About Comparative Effectiveness Data Being Used to Deny Access, click here to read the story.
4. PIPC Comments on ICER's Multiple Sclerosis Study, click here to read the letter.
5. Washington Examiner: HHS Secretary Alex Azar Doesn't Want Drug Access to Become an Equation, click here to read the article.
6. IFPA: Who Controls ICER?, click here to read the fact sheet.
7. International News: What Happens in Countries Using QALYs and Cost-Based Thresholds to Determine Coverage? See below for more. 
8. ICER Studies: Type 2 Diabetes, Arthritis, Cardiovascular Disease, Depression, MS, Duchenne Muscular Dystrophy, Peanut Allergy, click here to provide patient input.
9. AUCD: Submit a Proposal for 2019 Conference! Click here for more information.
10. Request for Comment: Definition of Health Technology Assessment, see below for detail.
11. PCORI Releases New Evidence Maps, click here to view PCORI's new evidence maps and click here to read more.
12. Alliance for Health Policy Holds Capitol Hill Briefing, click here to read more.
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 an article for Inside Health Policy, Partnership to Improve Patient Care (PIPC) Executive Director Sara van Geertruyden highlighted concerns from patient advocates about the use of comparative effectiveness data being used to limit patient access to drugs. She pointed out the problems with a "one-size-fits-all" approach, touting the Patient Centered Outcomes Research Institute's (PCORI) approached to comparative effectiveness research over the payer-focused approach taken by the Institute for Clinical and Economic Review (ICER). “Comparative effectiveness improves decision making by making sure the right patient gets the right treatment at the right time," said van Geertruyden. "But when you are talking about allowing coverage decisions based on averages to drive health care decision-making for individual patients, you allow payers and governments to drive one-size-fits-all decisions for patients." 

In This Week’s Issue:
 
1. PIPC Comments on ICER's Multiple Sclerosis Study, click here to read the letter.
2. PIPC Chairman Tony Coehlo: New York Budget is a Call to Action, click here to read the article.
3. PIPC Comments on IVI's Open-Source Value Platform Model, click here to read the letter.
4. Alliance for Health Policy Briefing on Comparative Effectiveness Research, click here for more information and to register.
5. Congressional Staff Preview PCORI Reauthorization at Bipartisan Policy Center Event, click here to read the article and click here to watch a webcast of the event.
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. AUCD: Submit a Proposal for 2019 Conference! Click here for more information.
9. Request for Comment: Definition of Health Technology Assessment, see below for details.
10. PCORI: Getting Useful Evidence to Stakeholders Faster, click here to read the blog post.
11. AHRQ Awards Physician $1.1M Grant for Clinical Decision Support, click here to read the article.
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.  

In This Week’s Issue:
 
1. PIPC Chairman Tony Coehlo: New York Budget is a Call to Action, click here to read the article.
2. PIPC Comments on IVI's Open-Source Value Platform Model, click here to read the letter.
3. JAMA: Why Physicians Should Trust in Patients, click here to read the article.
4. International News: What Happens in Countries Using QALYs and Cost-Based Thresholds to Determine Coverage? See below for more. 
5. ICER Studies: Cardiovascular Disease, SMA, Depression, MS, Duchenne Muscular Dystrophy, Peanut Allergy, click here to provide patient input.
6. AUCD: Submit a Proposal for 2019 Conference! Click here for more information.
7. HR Professionals Magazine Highlights PCORI Portfolio, click here to read the article.
8. Request for Comment: Definition of Health Technology Assessment, see below for details.
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.  

​The final New York budget is complete.  And now we know for sure that states feel empowered by this administration to discriminate in their Medicaid programs.  I had hoped that we were past these tactics to discriminate when, in 1992, HHS denied a state Medicaid waiver using quality-adjusted-life-years (QALYs) to determine its coverage because of its implications for violating the Americans with Disabilities Act (ADA) and when, in 2010, Congress banned use of QALYs in Medicare.  But it looks like we are fighting this kind of discrimination state-by-state now. 

In This Week’s Issue:
 
1. New York: Final Budget Being Analyzed for Discrimination Implications, see below for details.
2. FDA Releases New Framework for Incorporating Real-World Evidence, click here for the full announcement.
3. AAFP: Identifying Priorities Is First Step to Better Outcomes, click here to read the article.
4. International News: What Happens in Countries Using QALYs and Cost-Based Thresholds to Determine Coverage? See below for more. 
5. ICER Studies: Cardiovascular Disease, SMA, Depression, MS, Duchenne Muscular Dystrophy, Peanut Allergy, click here to provide patient input.
6. Request for Comment: Definition of Health Technology Assessment, see below for details.
7. BMJ Opinion: All Evidence is Real-World Evidence, click here to read the article.
8. Submit 2019 Fly-ins, Advocacy Days, and Conferences to Democratic Caucus, click here to submit your events.
9. Upcoming Events and Webinars, see details below.
10. Medical Journal Articles, see details below.
11. AHRQ Effective Program Updates, see details below.