​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.  

In This Week’s Issue:
 
1. Gunnar Esiason: A Flawed Economic Model Should Not Be Used to Deny Access to a Miracle Medication, click here to read the op-ed.
2. IVI Announces Patient Advisory Council, click here to read more.
3. In Letter to PCORI, PIPC Offers Input on Next 10 Years, click here to read the letter.
4. ICER Report Adds Insult to Injury for Cystic Fibrosis Patients, click here to read the blog.
5. Ruderman Foundation White Paper: Fair Resource Allocation During the COVID-19 Pandemic, click here to read the paper.
6. LA Times Editorial: Take Disability, QALYs Out of Equation for COVID-19 Care, click here to read the editorial.
7. PCORI Engagement Awards to Address COVID-19, click here to learn more.
8. PIPC, Other Disability and Patient Organizations Call for Further Guidance on COVID-19 Patient Non-Discrimination, click here to read the letter.
9. DUE WEDNESDAY: Request for Nominations for the Board of Governors of the Patient-Centered Outcomes Research Institute, click here to read the notice and to submit a nomination.
10. International News: What Happens in Countries Using QALYs and Cost-Based Thresholds to Determine Coverage? See below for more.
11. 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.
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. In Letter to PCORI, PIPC Offers Input on Next 10 Years, click here to read the letter.
2. ICER Report Adds Insult to Injury for Cystic Fibrosis Patients, click here to read the blog.
3. Ruderman Foundation White Paper: Fair Resource Allocation During the COVID-19 Pandemic, click here to read the paper.
4. LA Times Editorial: Take Disability, QALYs Out of Equation for COVID-19 Care, click here to read the editorial.
5. PCORI Engagement Awards to Address COVID-19, click here to learn more.
6. Cancer Organizations Call on States to Protect Cancer Patients Amid COVID-19, click here to read the letter.
7. PIPC, Other Disability and Patient Organizations Call for Further Guidance on COVID-19 Patient Non-Discrimination, click here to read the letter.
8. Request for Nominations for the Board of Governors of the Patient-Centered Outcomes Research Institute, click here to read the notice and to submit a nomination.
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, Acute Migraine, 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. LA Times Editorial: Take Disability, QALYs Out of Equation for COVID-19 Care, click here to read the editorial.
2. PCORI Engagement Awards to Address COVID-19, click here to learn more.
3. Cancer Organizations Call on States to Protect Cancer Patients Amid COVID-19, click here to read the letter.
4. PIPC, Other Disability and Patient Organizations Call for Further Guidance on COVID-19 Patient Non-Discrimination, click here to read the letter.
5. Lung Cancer Advocates Call for Protections for Individuals with Pre-Existing Conditions, Disabilities During COVID-19 Crisis, click here to read the letter.
6. New PCORI Executive Director: Our Shared Journey to Enduring Success, click here to read the blog post.
7. Evaluation Framework for Crisis Standard of Care Plans, see details below.
8. Members of Congress Speak Out on Discrimination Against People with Disabilities During Pandemic, see details below.
9. Request for Nominations for the Board of Governors of the Patient-Centered Outcomes Research Institute, click here to read the notice and to submit a nomination.
10. International News: What Happens in Countries Using QALYs and Cost-Based Thresholds to Determine Coverage? See below for more.
11. 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.
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, Other Disability and Patient Organizations Call for Further Guidance on COVID-19 Patient Non-Discrimination, click here to read the letter.
2. Lung Cancer Advocates Call for Protections for Individuals with Pre-Existing Conditions, Disabilities During COVID-19 Crisis, click here to read the letter.
3. New PCORI Executive Director: Our Shared Journey to Enduring Success, click here to read the blog post.
4. Evaluation Framework for Crisis Standard of Care Plans, see details below.
5. Health Care Rationing is Already Happening, click here to read the article.
6. Members of Congress Speak Out on Discrimination Against People with Disabilities During Pandemic, see details below.
7. Cystic Fibrosis Foundation: Expand Paid Sick Leave to Protect Vulnerable Populations, click here to read the letter.
8. Request for Nominations for the Board of Governors of the Patient-Centered Outcomes Research Institute, click here to read the notice and to submit a nomination.
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, Acute Migraine, 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. Evaluation Framework for Crisis Standard of Care Plans, see details below.
2. Health Care Rationing is Already Happening, click here to read the article.
3. Members of Congress Speak Out on Discrimination Against People with Disabilities During Pandemic, see details below.
4. Cystic Fibrosis Foundation: Expand Paid Sick Leave to Protect Vulnerable Populations, click here to read the letter.
5. Request for Nominations for the Board of Governors of the Patient-Centered Outcomes Research Institute, click here to read the notice and to submit a nomination.
6. Gunnar Esiason: Rationing-of-Care Debate Must Include Those Most at Risk, click here to read the article.
7. Advocates Call for Nondiscrimination in the Face of the Coronavirus Crisis, see details below.
8. Pioneer Institute Report: Quality Adjusted Life Years (QALY) – The Threat to Older Americans, see details below.
9. Planetree: Family Visitation Policies During Pandemics Must Account for Adverse Effects, click here to read the statement.
10. Caravanserai: What Nonprofits Need to Do to Survive Coronavirus, see details below.
11. International News: What Happens in Countries Using QALYs and Cost-Based Thresholds to Determine Coverage? See below for more.
12. 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.
13. Upcoming Events and Webinars, see details below.
14. Medical Journal Articles, see details below.
15. AHRQ Effective Program Updates, see details below.