In This Week’s Issue:
 
1. NCD and PIPC Chairman Issue Statements Opposing Executive Order to Reference Foreign QALY-Based Prices, see details below.
2. National Council on Independent Living Resolution on QALYs, see details below.
3. PCORI Annual Meeting September 16-17, click here to learn more and to register.
4. Patient Advocates Weigh in on Executive Orders in the Press, see details below.
5. Patient Groups Submit Comment Letters to ICER on Draft Evidence Report on UC Treatments, see details below.
6. NCD Chairman: Accessible Care is Equal Care, click here to read the article.
7. Senate COVID-19 Relief Proposal Overlooks Disability Community, Advocates Say, click here to read the article.
8. International News: What Happens in Countries Using QALYs and Cost-Based Thresholds to Determine Coverage? See below for more.
9. ICER's QALY-Based Study Topics: Hemophilia A, Sickle Cell Disease, Ulcerative Colitis, Cystic Fibrosis, Bladder Cancer, Opioid Treatments, High Cholesterol, Anemia in Chronic Kidney Disease, click here to provide patient input.
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. Patient Groups: New Drug Pricing Executive Orders Would Import Discriminatory Metrics, see details below.
2. Patient Advocates Weigh in on Executive Orders in the Press, see details below.
3. Patient Groups Submit Comment Letters to ICER on Draft Evidence Report on UC Treatments, see details below.
4. NCD Chairman: Accessible Care is Equal Care, click here to read the article.
5. Senate COVID-19 Relief Proposal Overlooks Disability Community, Advocates Say, click here to read the article.
6. U.K. Physicians Offer Cautionary Tale for Importing Discriminatory Foreign Policies, see details below.
7. Webinar: Unpacking ICER’s Models Assessing COVID-19 Treatments, click here to view the webinar.
8. OCR Continues its Work to Resolve COVID-19 Discrimination Cases, see details below.
9. International News: What Happens in Countries Using QALYs and Cost-Based Thresholds to Determine Coverage? See below for more.
10. ICER's QALY-Based Study Topics: Hemophilia A, Sickle Cell Disease, Ulcerative Colitis, Cystic Fibrosis, Bladder Cancer, Opioid Treatments, High Cholesterol, Anemia in Chronic Kidney Disease, 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. Patient Groups: New Drug Pricing Executive Orders Would Import Discriminatory Metrics, see details below.
2. U.K. Physicians Offer Cautionary Tale for Importing Discriminatory Foreign Policies, see details below.
3. Avalere: IPI Would Not Reduce Out-of-Pocket Costs, click here to read the report.
4. New PAVE Paper on Patient-Centered Value Measures, click here to read the paper.
5. Value Assessment Should be Expanded to Incorporate Health Inequality, click here to read the article.
6. Webinar: Unpacking ICER’s Models Assessing COVID-19 Treatments, click here to view the webinar.
7. OCR Continues its Work to Resolve COVID-19 Discrimination Cases, see details below.
8. International News: What Happens in Countries Using QALYs and Cost-Based Thresholds to Determine Coverage? See below for more.
9. ICER's QALY-Based Study Topics: Hemophilia A, Sickle Cell Disease, Ulcerative Colitis, Cystic Fibrosis, Bladder Cancer, Opioid Treatments, High Cholesterol, Anemia in Chronic Kidney Disease, click here to provide patient input.
10. Upcoming Events and Webinars, see details below.
11. Medical Journal Articles, see details below.
12. AHRQ Effective Program Updates, see details below.  

​Today, the Administration released its anticipated Executive Order related to Medicare. Among its provisions, it would allow for the government to reference prescription drug prices established internationally, regardless of the metrics used by those countries or implications for access to care in those countries, for drugs covered under Medicare Part B. The Partnership to Improve Patient Care and several other organizations expressed strong opposition to this concept when it was originally proposed in 2018. 

In This Week’s Issue:
 
1. Policymakers Should Avoid Importing Discrimination Through Foreign Reference Pricing, see details below.
2. Value Assessment Should be Expanded to Incorporate Health Inequality, click here to read the article.
3. Webinar: Unpacking ICER’s Models Assessing COVID-19 Treatments, click here to view the webinar.
4. Patients Know the Value of Medicines, click here to read the article.
5. OCR Continues its Work to Resolve COVID-19 Discrimination Cases, see details below.
6. International News: What Happens in Countries Using QALYs and Cost-Based Thresholds to Determine Coverage? See below for more.
7. ICER's QALY-Based Study Topics: Hemophilia A, Sickle Cell Disease, Ulcerative Colitis, Cystic Fibrosis, Bladder Cancer, Opioid Treatments, High Cholesterol, Anemia in Chronic Kidney Disease, click here to provide patient input.
8. Upcoming Events and Webinars, see details below.
9. Medical Journal Articles, see details below.
10. AHRQ Effective Program Updates, see details below.  

In This Week’s Issue:
 
1. Webinar: Unpacking ICER’s Models Assessing COVID-19 Treatments, click here to view the webinar.
2. Experts and Advocates Oppose Importing Discrimination Through Foreign Reference Pricing, see details below.
3. Patients Know the Value of Medicines, click here to read the article.
4. Video: Bringing Patient Centered Outcomes Research to the CF Community, click here to view the video.
5. Dollars-and-Cents Calculations Should Not Figure in to Saving a Life, click here to read the full article from the Genetic Literacy Project.
6. OCR Settles Tennessee Case on COVID-19 Patient Non-Discrimination, see details below.
7. PIPC Submits Comment Letter to ICER on Draft Evidence Report for NASH, click here to read the letter.
8. International News: What Happens in Countries Using QALYs and Cost-Based Thresholds to Determine Coverage? See below for more.
9. ICER's QALY-Based Study Topics: Hemophilia A, Sickle Cell Disease, Ulcerative Colitis, Cystic Fibrosis, Bladder Cancer, Opioid Treatments, High Cholesterol, Anemia in Chronic Kidney Disease, click here to provide patient input.
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. Webinar: Unpacking ICER’s Models Assessing COVID-19 Treatments, see details below.
 
2. Dollars-and-Cents Calculations Should Not Figure in to Saving a Life, click here to read the full article from the Genetic Literacy Project.
 
3. OCR Settles Tennessee Case on COVID-19 Patient Non-Discrimination, see details below.
4. Morning Consult: Cost-Effectiveness in Health Care Is Racist, click here to read the op-ed.
5. PIPC Submits Comment Letter to ICER on Draft Evidence Report for NASH, click here to read the letter.
6. Experts and Advocates Oppose Importing Discrimination Through Foreign Reference Pricing, see details below.
7. Cost Assessors Must Consider Novel Value Elements, click here to read the article.
8. International News: What Happens in Countries Using QALYs and Cost-Based Thresholds to Determine Coverage? See below for more.
9. ICER's QALY-Based Study Topics: Hemophilia A, Sickle Cell Disease, Ulcerative Colitis, Cystic Fibrosis, Bladder Cancer, Opioid Treatments, High Cholesterol, Anemia in Chronic Kidney Disease, click here to provide patient input.
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. PIPC Submits Comment Letter to ICER on Draft Evidence Report for NASH, click here to read the letter.
2. Experts and Advocates Oppose Importing Discrimination Through Foreign Reference Pricing, see details below.
3. Cost Assessors Must Consider Novel Value Elements, click here to read the article.
4. Rethinking How We Measure a Drug's 'Value,' click here to read the article.
5. Over 50 Leading Patient Groups Join PIPC Letter on ICER’s COVID-19 Treatment Assessments, see details below.
6. International News: What Happens in Countries Using QALYs and Cost-Based Thresholds to Determine Coverage? See below for more.
7. ICER's QALY-Based Study Topics: Hemophilia A, Sickle Cell Disease, Ulcerative Colitis, Cystic Fibrosis, Bladder Cancer, Opioid Treatments, High Cholesterol, Anemia in Chronic Kidney Disease, click here to provide patient input.
8. Upcoming Events and Webinars, see details below.
9. Medical Journal Articles, see details below.
10. AHRQ Effective Program Updates, see details below.  

In This Week’s Issue:
 
1. Experts Agree that Foreign Reference Pricing Has the Potential to Limit Access to Needed Treatments for Patients and People with Disabilities, see details below.
2. Rethinking How We Measure a Drug's 'Value,' click here to read the article.
3. Over 50 Leading Patient Groups Join PIPC Letter on ICER’s COVID-19 Treatment Assessments, see details below.
4. SWHR: ICER’s Value Framework is a Work in Progress for Women’s Health, click here to read the blog post.
5. Accounting for our Differences Matters in Value Assessment, click here to read the article.
6. Value Assessment Organizations Should Learn from the Experts on Patient Engagement, click here to read the blog post, the latest entry in PIPC's series The Data Mine.
7. International News: What Happens in Countries Using QALYs and Cost-Based Thresholds to Determine Coverage? See below for more.
8. ICER's QALY-Based Study Topics: Hemophilia A, Sickle Cell Disease, Ulcerative Colitis, Cystic Fibrosis, Bladder Cancer, Opioid Treatments, High Cholesterol, click here to provide patient input.
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. Over 50 Leading Patient Groups Join PIPC Letter on ICER’s COVID-19 Treatment Assessments, see details below.
2. SWHR: ICER’s Value Framework is a Work in Progress for Women’s Health, click here to read the blog post.
3. Accounting for our Differences Matters in Value Assessment, click here to read the article.
4. Value Assessment Organizations Should Learn from the Experts on Patient Engagement, click here to read the blog post, the latest entry in PIPC's series The Data Mine.
5. Traditional Cost-Effectiveness Models Cannot Capture Medicines' Benefits, click here to read the article.
6. IVI: COVID-19 Forces a Reassessment of Measuring Value, click here to read the article.
7. International News: What Happens in Countries Using QALYs and Cost-Based Thresholds to Determine Coverage? See below for more.
8. ICER's QALY-Based Study Topics: Hemophilia A, Sickle Cell Disease, Ulcerative Colitis, Cystic Fibrosis, Bladder Cancer, Opioid Treatments, High Cholesterol, click here to provide patient input.
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. Value Assessment Organizations Should Learn from the Experts on Patient Engagement, click here to read the blog post, the latest entry in PIPC's series The Data Mine.
2. Webinar on Protecting Patients with Cystic Fibrosis, click here for more information and to register.
3. Traditional Cost-Effectiveness Models Cannot Capture Medicines' Benefits, click here to read the article.
4. IVI: COVID-19 Forces a Reassessment of Measuring Value, click here to read the article.
5. Key Issues with ICER's Report on COVID-19, click here to read PIPC's one-pager.
6. International News: What Happens in Countries Using QALYs and Cost-Based Thresholds to Determine Coverage? See below for more.
7. ICER's QALY-Based Study Topics: Hemophilia A, Sickle Cell Disease, Ulcerative Colitis, Cystic Fibrosis, Bladder Cancer, Opioid Treatments, click here to provide patient input.
8. Upcoming Events and Webinars, see details below.
9. Medical Journal Articles, see details below.
10. AHRQ Effective Program Updates, see details below. 

​Dr. Steven Pearson, founder and president of the Institute for Clinical and Economic Review (ICER), recently wrote that no clear framework exists to engage patients in medical research. In A proposed framework for patient engagement throughout the broader research enterprise, published in the Journal of Comparative Effectiveness Research, Dr. Pearson acknowledges that patient engagement is an important component of medical research, but he fails to recognize years of accomplishments in the field. This misleading premise ignores rigorous patient-centered outcomes research and evolving development of evidence-based frameworks for patient engagement.

In This Week’s Issue:
 
1. Webinar on Protecting Patients with Cystic Fibrosis, click here for more information and to register.
2. IVI: COVID-19 Forces a Reassessment of Measuring Value, click here to read the article.
3. The Prior Authorization Process Must be Reformed, click here to read the op-ed.
4. Key Issues with ICER's Report on COVID-19, click here to read PIPC's one-pager.
5. Beware Undervaluing COVID-19 Drugs, click here to read the op-ed.
6. New Survey: Majority of Americans Don't Know Healthcare Rationing Takes Place in Their Own Backyard, click here to read more.
7. Over 60 Leading Patient and Disability Groups Join PIPC in Letter to New ICER VP for Patient Engagement, click here to read the letter.
8. International News: What Happens in Countries Using QALYs and Cost-Based Thresholds to Determine Coverage? See below for more.
9. ICER's QALY-Based Study Topics: Hemophilia A, Sickle Cell Disease, Ulcerative Colitis, Cystic Fibrosis, Bladder Cancer, Opioid Treatments, click here to provide patient input.
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. Key Issues with ICER's Report on COVID-19, click here to read PIPC's one-pager.
2. Beware Undervaluing COVID-19 Drugs, click here to read the op-ed.
3. New Survey: Majority of Americans Don't Know Healthcare Rationing Takes Place in Their Own Backyard, click here to read more.
4. Over 60 Leading Patient and Disability Groups Join PIPC in Letter to New ICER VP for Patient Engagement, click here to read the letter.
5. ICER’s Cost Model Is Not Only Wrong It’s Also Dangerous, click here to read the article.
6. Gunnar Esiason: A Flawed Economic Model Should Not Be Used to Deny Access to a Miracle Medication, click here to read the op-ed.
7. In Letter to PCORI, PIPC Offers Input on Next 10 Years, click here to read the letter.
8. ICER Report Adds Insult to Injury for Cystic Fibrosis Patients, click here to read the blog.
9. International News: What Happens in Countries Using QALYs and Cost-Based Thresholds to Determine Coverage? See below for more.
10. ICER's QALY-Based Study Topics: Hemophilia A, Sickle Cell Disease, Ulcerative Colitis, Cystic Fibrosis, Bladder Cancer, Opioid Treatments, 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. Over 60 Leading Patient and Disability Groups Join PIPC in Letter to New ICER VP for Patient Engagement, click here to read the letter.
2. ICER’s Cost Model Is Not Only Wrong It’s Also Dangerous, click here to read the article.
3. Gunnar Esiason: A Flawed Economic Model Should Not Be Used to Deny Access to a Miracle Medication, click here to read the op-ed.
4. IVI Announces Patient Advisory Council, click here to read more.
5. In Letter to PCORI, PIPC Offers Input on Next 10 Years, click here to read the letter.
6. ICER Report Adds Insult to Injury for Cystic Fibrosis Patients, click here to read the blog.
7. APPLICATION DEADLINE FRIDAY: PCORI Engagement Awards to Address COVID-19, click here to learn more.
8. International News: What Happens in Countries Using QALYs and Cost-Based Thresholds to Determine Coverage? See below for more.
9. ICER's QALY-Based Study Topics: Hemophilia A, Acute Migraine, Sickle Cell Disease, Ulcerative Colitis, Cystic Fibrosis, Bladder Cancer, Opioid Treatments, click here to provide patient input.
10. Upcoming Events and Webinars, see details below.
11. Medical Journal Articles, see details below.
12. AHRQ Effective Program Updates, see details below.