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.  

In This Week’s Issue:
 
1. New York: Tell Legislators to Not Allow Use of Discriminatory Cost-Effectiveness Measures, click here for a tool to find your legislator and a template letter.
2. PIPC Chairman Tony Coehlo Writes: Rising Costs Must be Met with Patient-Centered Solutions, click here to read the article.
3. Morning Consult Poll Finds Americans Support Patient-Centered Solutions, click here to read the announcement and the survey results.
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. AMA President: Prior Authorization Requirements Hurt Patients, click here to read the article.
7. PCORI Funds Studies on Shared Decision Making, click here to read the article.
8. Review and Comment! IVI Releases New Value Assessment Platform for Non-Small Cell Lung Cancer Therapy Sequences, see details below.
9. PCORI Advisory Panel Openings, see details below.
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 Chairman Tony Coehlo Writes: Rising Costs Must be Met with Patient-Centered Solutions, click here to read the article.
2. Morning Consult Poll Finds Americans Support Patient-Centered Solutions, click here to read the announcement and the survey results.
3. PIPC Joins CancerCare in Encouraging New York State to Reject QALYs, click here to read the letter.
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. SWHR Study: Barriers to Care with Women with Endometrosis, click here to read the blog post and click here to read the study.
7. PCORI Blog: Mapping Evidence that Patients Can Use, click here to read the blog post.
8. New Pharmacy Quality Alliance Medication Access Framework for Quality Measurement, click here to read the blog post.
9. Review and Comment! IVI Releases New Value Assessment Platform for Non-Small Cell Lung Cancer Therapy Sequences, see details below.
10. PCORI Advisory Panel Openings, see details below.
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. 

Today, the Partnership to Improve Patient Care (PIPC) released a public opinion poll by Morning Consult regarding the use of cost-effectiveness assessments to determine value of coverage and treatment costs. The survey demonstrates that voters resoundingly reject the main tenets of cost-effectiveness analyses with 82 percent of American voters objecting to their use in determining health care coverage and reimbursement decisions. These types of measures, which are often used outside of the U.S. to limit patient access to medicines, have been frequently criticized as discriminatory by patients and persons with disabilities. Increasingly, policymakers and payers have proposed to use these same tools to limit coverage for Medicare and Medicaid beneficiaries.  

This post originally appeared as an op-ed in Morning Consult on March 15, 2019. 

Across the nation, there’s a collective agreement that something must be done by lawmakers and regulators to address the rising cost of health care. As new policies and regulations are designed to meet affordability standards, it is important that patient-centered solutions remain at the forefront. However, that is not what we’re seeing in recent state policies across the nation

In This Week’s Issue:
 
1. PIPC Joins CancerCare in Encouraging New York State to Reject QALYs, click here to read the letter.
2. PIPC Webinar: Value Assessments and Their Impact on Patients, click here to view the webinar.
3. International News: What Happens in Countries Using QALYs and Cost-Based Thresholds to Determine Coverage? Click here to view. 
4. ICER Studies: Cardiovascular Disease, SMA, Depression, MS, Duchenne Muscular Dystrophy, Peanut Allergy, click here to provide patient input.
5. Experts at PCORI Discuss the Evolution of Patient Voices in Healthcare, click here to read the article.
6. PIPC Encourages Senate HELP Committee to Pursue Patient-Centered Approaches to Lower Health Care Costs, click here to read the letter.
7. PCORI Offering Scholarships to Attend its Annual Meeting, see details below.
8. Review and Comment! IVI Releases New Value Assessment Platform for Non-Small Cell Lung Cancer Therapy Sequences, see details below.
9. PCORI Advisory Panel Openings, see details below.
10. Roundtable Seeks to Create Patient-Centered Quality Measurement Rubric, click here to read a summary.
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 Encourages Senate HELP Committee to Pursue Patient-Centered Approaches to Lower Health Care Costs, click here to read the letter.
2. PIPC Webinar: Value Assessments and Their Impact on Patients, click here to view the webinar.
3. The PCORI Blog: Spotlighting Rare Disease Research, click here to read the article.
4. Patient EngagementHIT: Patient Engagement Strategies for Improving Patient Activation, click here to read the article.
5. NYT: Doctors and Racial Bias: Still a Long Way to Go, click here to read the article.
6. PIPC Submits Comment Letter to ICER on International Collaborative to Develop New Methods to Guide Value-Based Pricing of Potential Cures, click here to read the letter.
7. Review and Comment! IVI Releases New Value Assessment Platform for Non-Small Cell Lung Cancer Therapy Sequences, see details below.
8. PCORI Advisory Panel Openings, see details below.
9. Submit 2019 Fly-ins, Advocacy Days, and Conferences to Democratic Caucus, click here to submit your events.
10. International News: What Happens in Countries Using QALYs and Cost-Based Thresholds to Determine Coverage? Click here to view. 
11. ICER Studies: Cardiovascular Disease, SMA, Depression, MS, Duchenne Muscular Dystrophy, Peanut Allergy, click here to provide patient input.
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 Webinar: Value Assessments and Their Impact on Patients, click here to register.
2. Op-ed: The U.S. Shouldn't Use the 'QALY' in Drug Cost-Effectiveness Reviews, click here to read the op-ed.
3. Alliance for Aging Research: Governors Should Reject Unscientific and Discriminatory Approaches to Drug Pricing, click here to read the op-ed.
4. PIPC Submits Comment Letter to ICER on International Collaborative to Develop New Methods to Guide Value-Based Pricing of Potential Cures, click here to read the letter.
5. Upcoming IVI Webinars, see details below.
6. Review and Comment! IVI Releases New Value Assessment Platform for Non-Small Cell Lung Cancer Therapy Sequences, see details below.
7. PCORI Advisory Panel Openings, see details below.
8. PIPC Submits Comments to DoD on Proposed TRICARE Pharmacy Benefit Reforms, click here to read the letter.
9. Submit 2019 Fly-ins, Advocacy Days, and Conferences to Democratic Caucus, click here to submit your events.
10. International News: What Happens in Countries Using QALYs and Cost-Based Thresholds to Determine Coverage? Click here to view. 
11. ICER Studies: SMA, Depression, MS, Duchenne Muscular Dystrophy, Peanut Allergy click here to provide patient input
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 Webinar: Value Assessments and Their Impact on Patients, click here to register.
2. PIPC Submits Comments to DoD on Proposed TRICARE Pharmacy Benefit Reforms, click here to read the letter.
3. Chairman's Corner: ICER Should Join Others in Moving Beyond QALYs, click here to read the blog.
4. PIPC Patient Blog: Patient Perspectives on the Quality Adjusted Life Year, click here to read the blog. 
5. Review and Comment! IVI Releases New Value Assessment Platform for Non-Small Cell Lung Cancer Therapy Sequences, see details below.
6. AcademyHealth: Engagement Science — Where Do We Go From Here? Click here to read the blog.
7. Patient EngagementHIT: Individualized Care Key for Employer-Sponsored Wellness Programs, 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. International News: What Happens in Countries Using QALYs and Cost-Based Thresholds to Determine Coverage? Click here to view. 
10. ICER Studies: SMA, Depression, MS, Duchenne Muscular Dystrophy, Peanut Allergy click here to provide patient input
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 Patient Blog: Patient Perspectives on the Quality Adjusted Life Year, click here to read the blog. 
2. Will ICER's Response to Attacks on the QALY Quiet the Critics? A Reply from the Partnership to Improve Patient Care, click here to read the full response.
3. Review and Comment! IVI Releases New Value Assessment Platform for Non-Small Cell Lung Cancer Therapy Sequences, see details below.
4. PIPC Webinar: Value Assessments and Their Impact on Patients, click here to register.
5. Column: Americans Have Healthier Hears. We Have A Healthier Budget, Too, click here to read the column. 
6. ONS Blog: Experience the Power of Patient-Centered Research Through PCORI, click here to read the blog.
7. Watch: Keeping Community Engagement Central to Rare Disease Research, click here to watch the video.
8. UNLV Blog: The Patient-Centered Approach to Quality-of-Care Life, click here to read the blog.
9. Submit 2019 Fly-ins, Advocacy Days, and Conferences to Democratic Caucus, click here to submit your events.
10. PIPC: Don't Discriminate on Care, click here to view.
11. International News: What Happens in Countries Using QALYs and Cost-Based Thresholds to Determine Coverage? Click here to view. 
12. Upcoming ICER Studies: Angiodema, Asthma, Opioid Use Disorder, MS, Peanut Allergy, SMA, Depression, click here to provide patient input
13. Upcoming Events and Webinars, see details below.
14. Medical Journal Articles, see details below.
15. AHRQ Effective Program Updates, see details below.  

By: Elizabeth Franklin 

The use of the quality adjusted life year, or QALY, is widespread in research, health economics, and value assessment. However, the QALY is not without controversy as has been noted many times in the PIPC blog. Health economics and outcomes researchers, policy makers, and advocates have long debated the appropriateness and ethics of the QALY. Governmental agencies, managed care organizations, and healthcare payers routinely utilize the QALY in their decision making. However, one voice that has been glaringly absent from this debate is the most important voice: patients. 

In response to a recent blog post entitled “Will ICER’s Response to Attacks on the QALY Quiet the Critics?” (December 18, 2018) we must unfortunately reply: Absolutely not. Regrettably, ICER’s response suggests that for patients, the only options are a) a metric that is widely acknowledged to discriminate against the elderly and people with disabilities, or b) a metric that ignores elements of value that are critically important to patients. Patients need another option, and PIPC is committed to supporting it.