In This Week’s Issue:
 
1. 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.
2. Gunnar Esiason: Rationing-of-Care Debate Must Include Those Most at Risk, click here to read the article.
3. Advocates Call for Nondiscrimination in the Face of the Coronavirus Crisis, see details below.
4. Pioneer Institute Report: Quality Adjusted Life Years (QALY) – The Threat to Older Americans, see details below.
5. Planetree: Family Visitation Policies During Pandemics Must Account for Adverse Effects, click here to read the statement.
6. People with Disabilities Are Among Most Vulnerable During the COVID-19 Crisis, click here to read the article.
7. Caravanserai: What Nonprofits Need to Do to Survive Coronavirus, 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, 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. HHS Office of Civil Rights Issues Nondiscrimination Guidance in the COVID-19 Crisis, see details below.
2. Patients Should Fear an FDA-ICER Partnership, click here to read the op-ed.
3. Disability Groups File Complaints on COVID-19 Guidance that Discriminates Against People with Disabilities, see details below.
4. People with Disabilities Are Among Most Vulnerable During the COVID-19 Crisis, click here to read the article.
5. Rationing Care Violates Civil Rights of People with Disabilities, click here to read the article.
6. Cancer Patient Speaks Out About Seeking Treatment During Coronavirus, click here to read the article.
7. Don't Let Bureaucrats Deny Care for Kids with Cystic Fibrosis, click here to read the op-ed.
8. PIPC Submits Comment Letter to ICER on Draft Evidence Report for Cystic Fibrosis, click here to read the letter.
9. COVID-19 Has Highlighted the Need for Good Hygiene, and Cystic Fibrosis Patients Hope This Awareness Continues, click here to read the article.
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. People with Disabilities Call for Nondiscrimination in the COVID-19 Crisis, see details below.
2. Don't Let Bureaucrats Deny Care for Kids with Cystic Fibrosis, click here to read the op-ed.
3. PIPC Submits Comment Letter to ICER on Draft Evidence Report for Cystic Fibrosis, click here to read the letter.
4. Advocacy Groups Seek COVID-19 Assistance, see details below.
5. Over 150 Groups Urge Congress to Erect Safeguards Around Medicare & Medicaid Demonstration Projects, click here to read the letter.
6. COVID-19 Has Highlighted the Need for Good Hygiene, and Cystic Fibrosis Patients Hope This Awareness Continues, click here to read the article.
7. PIPC Patient Blog: Migraine Patients Deserve Access to Needed Treatments, click here to read the blog.
8. Headache and Migraine Patients Speak Out on ICER's Acute Migraine Report, 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, 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. Nearly 150 Groups Urge Congress to Erect Safeguards Around Medicare & Medicaid Demonstration Projects, click here to read the letter.
2. PIPC Patient Blog: Migraine Patients Deserve Access to Needed Treatments, click here to read the blog.
3. Washington Post: Protecting Older People Amidst Coronavirus, click here to read the article.
4. Headache and Migraine Patients Speak Out on ICER's Acute Migraine Report, see details below.
5. International News: What Happens in Countries Using QALYs and Cost-Based Thresholds to Determine Coverage? See below for more. 
6. 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.
7. Upcoming Events and Webinars, see details below.
8. Medical Journal Articles, see details below.
9. AHRQ Effective Program Updates, see details below.  

In This Week’s Issue:
 
1. PIPC Patient Blog: Migraine Patients Deserve Access to Needed Treatments, click here to read the blog.
2. Briefing: The Need for Safeguards at CMMI, see details below.
3. Save the Date: Sickle Cell Patient Advocacy Summit, see details below.
4. Headache and Migraine Patients Speak Out on ICER's Acute Migraine Report, see details below. 
5. Washington State Senate Votes to Give Prescription Drug Affordability Board Power to Use Cost Thresholds Without Patient Representation, see details below.
6. A Conversation About Cystic Fibrosis, Caregiving and Innovation, click here to read the interview.
7. PCORI Advisory Panel Head on Continued Dedication to Rare Disease Research, click here to read the blog post.
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. Headache and Migraine Patients Speak Out on ICER's Acute Migraine Report, see details below.
2. Washington State Senate Votes to Give Prescription Drug Affordability Board Power to Use Cost Thresholds Without Patient Representation, see details below.
3. Save the Date: Sickle Cell Patient Advocacy Summit, see details below.
4. A Conversation About Cystic Fibrosis, Caregiving and Innovation, click here to read the interview.
5. PCORI Advisory Panel Head on Continued Dedication to Rare Disease Research, click here to read the blog post.
6. ICER Releases Cystic Fibrosis Draft Evidence Report: Learn More, see details below.
7. PIPC Submits Comment Letter to ICER on Draft Evidence Report for Sickle Cell Disease, click here to read the letter.
8. Pioneer Institute: ICER's Methods Are Likely Illegal under the ADA, click here to read the report.
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, Beta Thalassemia, 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. ICER Releases Cystic Fibrosis Draft Evidence Report: Learn More, see details below.
2. PIPC Submits Comment Letter to ICER on Draft Evidence Report for Sickle Cell Disease, click here to read the letter.
3. Washington State Senate Votes to Give Prescription Drug Affordability Board Power to Use Cost Thresholds Without Patient Representation, see details below.
4. Pioneer Institute: ICER's Methods Are Likely Illegal under the ADA, click here to read the report.
5. Massachusetts Finalizes Value Assessment Regulations, see details below.
6. ICER's Oral Semaglutide Model Exists in an Imaginary World, 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, Beta Thalassemia, Acute Migraine, Sickle Cell Disease, Ulcerative Colitis, Cystic Fibrosis, Bladder Cancer, Opioid Treatments, 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. PIPC, ALS Association, and Epilepsy Foundation on Massachusetts Approach to Drug Value Assessment, click here to read the press release.
2. Patients and People with Disabilities Remain Concerned about Importing QALYs From Other Countries, see details below.
3. Administration’s Medicaid Initiative Would Invite Closed Formularies, Implicate Use of QALYs, see details below.
4. ICER Releases Revised Value Assessment Framework for 2020, see details below.
5. Webinar on ICER's Sickle Cell Report, click here to view the webinar.
6. Undark: Patients are Rightfully Wary of QALY-based Analyses, click here to read the article.
7. An Independent Federal Agency Recognizes the Danger of QALYs, click here to read the blog post.
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, Beta Thalassemia, Acute Migraine, Arthritis, Sickle Cell Disease, Ulcerative Colitis, Cystic Fibrosis, 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. Patients and People with Disabilities Remain Concerned about Importing QALYs From Other Countries, see details below.
2. Administration’s Medicaid Initiative Would Invite Closed Formularies, Implicate Use of QALYs, see details below.
3. ICER Releases Revised Value Assessment Framework for 2020, see details below.
4. Webinar on ICER's Sickle Cell Report, click here to view the webinar.
5. Undark: Patients are Rightfully Wary of QALY-based Analyses, click here to read the article.
6. Colorado is Next to Propose Use of the Discriminatory QALY Method to Restrict Coverage, see details below.
7. An Independent Federal Agency Recognizes the Danger of QALYs, click here to read the blog post.
8. New National Health Council Patient Engagement Tool, 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's QALY-Based Study Topics: Hemophilia A, Beta Thalassemia, Acute Migraine, Arthritis, Sickle Cell Disease, Ulcerative Colitis, Cystic Fibrosis, 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. Sickle Cell Webinar and Survey, see details below.
2. Patients are Rightfully Wary of QALY-based Analyses, click here to read the article.
3. Don't Legalize Discrimination against People with Disabilities, click here to read the article.
4. ICER Discriminates against People with Rare Diseases, click here to read the article.
5. Colorado is Next to Propose Use of the Discriminatory QALY Method to Restrict Coverage, see details below.
6. An Independent Federal Agency Recognizes the Danger of QALYs, click here to read the blog post.
7. Friends of PCORI Reauthorization Congratulates PCORI's New Executive Director, click here to read the press release.
8. BPC Highlights Bipartisanship Driving PCORI’s Recent Reauthorization, see details below.
9. New National Health Council Patient Engagement Tool, click here to read more.
10. Patient-Reported Outcome Measures for Oncology Care Call for Public Comment -- Comment by January 29, click here to read more and to comment.
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, Beta Thalassemia, Acute Migraine, Arthritis, Sickle Cell Disease, Ulcerative Colitis, Cystic Fibrosis, 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.  

In This Week’s Issue:
 
1. Gunnar Esiason: Listen to Patients, Not Discriminatory Cost-Effectiveness Models, click here to read the article.
2. Colorado is Next to Propose Use of the Discriminatory QALY Method to Restrict Coverage, see details below.
3. California Embracing “Most-Favored Nation” Concept Relying on International Drug Prices Based on QALYs and Similar Metrics, see details below.
4. An Independent Federal Agency Recognizes the Danger of QALYs, click here to read the blog post.
5. Join the Headache Migraine Policy Forum and Migraine.com for a Facebook live event highlighting the patient voice on Migraine, prior to ICER’s meeting on Acute Migraine, see details below. 
6. New Survey for Sickle Cell Patients and Caregivers, click here to take the survey.
7. Upcoming Sickle Cell Disease Webinar: Patient Group Interactions with ICER, see details below.
8. Friends of PCORI Reauthorization Congratulates PCORI's New Executive Director, click here to read the press release.
9. Patient-Reported Outcome Measures for Oncology Care Call for Public Comment, click here to read more and to comment.
10. Recap of the 10th Annual PIPC Forum, click here to see more.
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, Beta Thalassemia, Acute Migraine, Arthritis, Sickle Cell Disease, Ulcerative Colitis, Cystic Fibrosis, 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.  

In This Week’s Issue:
 
1. Gunnar Esiason: Listen to Patients, Not Discriminatory Cost-Effectiveness Models, click here to read the article.
2. Value Our Health Sickle Cell Disease Webinar, see details below.
3. California Embracing “Most-Favored Nation” Concept Relying on International Drug Prices Based on QALYs and Similar Metrics, see details below.
4. Recap of the 10th Annual PIPC Forum, click here to see more.
5. WSJ Editorial: Where You Want to Get Cancer, click here to read the article.
6. Congratulations PCORI on a 10-Year Reauthorization!, click here to view the full press release.
7. Video: Partnerships May Lead to Better Engagement, click here to watch the video.
8. FH Call to Action, see details below.
9. PIPC Joins Leading Patient Groups in Comment Letter on TennCare II Demonstration, click here to read the letter.
10. PIPC Submits Feedback on 'Cures 2.0' Legislation, click here to read the letter.
11. Alliance for Aging Research Letter on Current Drug Proposals, click here to read the letter.
12. International News: What Happens in Countries Using QALYs and Cost-Based Thresholds to Determine Coverage? See below for more. 
13. ICER's QALY-Based Study Topics: Hemophilia A, Beta Thalassemia, Acute Migraine, Arthritis, Sickle Cell Disease, Ulcerative Colitis, Cystic Fibrosis, click here to provide patient input.
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. Congratulations PCORI on a 10-Year Reauthorization!, click here to view the full press release.
2. PIPC Joins Leading Patient Groups in Comment Letter on TennCare II Demonstration, click here to read the letter.
3. PIPC Submits Feedback on 'Cures 2.0' Legislation, click here to read the letter.
4. Alliance for Aging Research Letter on Current Drug Proposals, click here to read the letter.
5. PCORI December Board of Governors Meeting, see details below.
6. PIPC Submits Comment Letter to ICER on Draft Evidence Report for Acute Migraines, click here to read the letter
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: Beta Thalassemia, Acute Migraine, Arthritis, Sickle Cell Disease, Ulcerative Colitis, Cystic Fibrosis, 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. Please Join PIPC TODAY For Our 10th Annual Forum!, click here to view the invitation.
2. Patient Advocacy Groups Submit Letter Urging Massachusetts Health Policy Commission to Reject QALY-Based Value Assessments, click here to read the letter.
3. PIPC Submits Comment Letter to ICER on Draft Evidence Report for Acute Migraines, click here to read the letter
4. Expanding the Use of Multi-Criteria Decision Analysis, click here to read the article.
5. IVI Issue Brief on ICER's Analysis of JAK Inhibitors, see details below.
6. Needs of Older Patients Must Be Considered in Value Assessments, click here to read the interview.
7. One Patient's Path Towards Advocacy, click here to read the article.
8. Tennessee 1115 Waiver Application Would Reference “Cost Effectiveness," see details below.
9. PCORI Reauthorization Discussions Advance, see details below.
10. Input Due TODAY -- House Begins 21st Century Cures 2.0 Effort, 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: Beta Thalassemia, Acute Migraine, Arthritis, Sickle Cell Disease, Ulcerative Colitis, Cystic Fibrosis, 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

In This Week’s Issue:
 
1. Please Join PIPC For Our 10th Annual Forum!, click here to view the invitation.
2. Tennessee 1115 Waiver Application Would Reference “Cost Effectiveness," see details below.
3. National Council on Disability Report on QALYs, click here to read the report.
4. PCORI Reauthorization Discussions Advance, see details below.
5. Medical Groups Push to Save PCORI, click here to read the article.
6. IVI: Future Value Assessments Must Include Patient-Defined Factors of Value, click here to read the article.
7. House Begins 21st Century Cures 2.0 Effort, see details below.
8. PIPC Urges Policymakers to Protect Patients and People with Disabilities, see below for details.
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: Beta Thalassemia, Acute Migraine, Type 2 Diabetes, Arthritis, Sickle Cell Disease, Ulcerative Colitis, Cystic Fibrosis, 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.