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.  

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.