In This Week’s Issue:
 
1. PCORI Seeks Nominations for Advisory Panels, click here to learn more, submit a nomination, or apply to be on an advisory panel.
2. Study: Step Therapy Can Lead to Higher OOP Costs for Crohn’s Disease Patients, click here to read more.
3. 2020 NMQF Virtual Leadership Summit Panel on Value Assessment, see details below.
4. PCORI Proposed Principles for the Consideration of the Full Range of Outcomes Data and Webinar Series -- Comments Open through November 13, 2020, see details below.
5. PIPC and EveryLife Foundation for Rare Diseases Webinar on the Use of Value Assessments for Cell and Gene Therapy – Recording Available, click here to view a recording of the webinar.
6. PIPC Submits Comment Letter on ICER Draft Evidence Report for Bladder Cancer Treatments, click here to read the letter.
7. RESCHEDULED -- National Health Council Webinar on Multi-Criteria Decision Analysis, click here to learn more and register.
8. ADA 25 Advancing Leadership Forum on Disability Justice in the Fight for Racial Equity, click here to learn more and register.
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, Bladder Cancer, Opioid Treatments, High Cholesterol, Anemia in Chronic Kidney Disease, Lupus Nephritis, Multiple Myeloma, Alzheimer's 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. 2020 NMQF Virtual Leadership Summit Panel on Value Assessment, see details below.
2. PIPC and EveryLife Foundation for Rare Diseases Webinar on the Use of Value Assessments for Cell and Gene Therapy – Recording Available, click here to view a recording of the webinar.
3. PIPC Submits Comment Letter on ICER Draft Evidence Report for Bladder Cancer Treatments, click here to read the letter.
4. RESCHEDULED -- National Health Council Webinar on Multi-Criteria Decision Analysis, click here to learn more and register.
5. PCORI and RAND to Evaluate Measures of Patient and Stakeholder Engagement, click here to learn more.
6. Value Our Health Map on QALYs Around the World, click here to view the map.
7. ADA 25 Advancing Leadership Forum on Disability Justice in the Fight for Racial Equity, click here to learn more and register.
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, Bladder Cancer, Opioid Treatments, High Cholesterol, Anemia in Chronic Kidney Disease, Lupus Nephritis, Multiple Myeloma, Alzheimer's 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. National Health Council Webinar on Multi-Criteria Decision Analysis, click here to learn more and register.
2. Beyond Type 1 Offers Action Plans for Insulin Access, click here to visit GetInsulin.org.
3. Webinar on Understanding Value Assessment, click here to register.
4. Value Our Health Map on QALYs Around the World, click here to view the map.
5. PCORI Proposed Principles for the Consideration of the Full Range of Outcomes Data and Webinar Series, see details below.
6. ADA 25 Advancing Leadership Forum on Disability Justice in the Fight for Racial Equity, click here to learn more and register.
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, Bladder Cancer, Opioid Treatments, High Cholesterol, Anemia in Chronic Kidney Disease, Lupus Nephritis, Multiple Myeloma, Alzheimer's Disease, 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 Webinar on the Use of Value Assessments for Cell and Gene Therapy, see details below.
2. Sickle Cell Disease and Traditional Value Assessment Discussion at the 2020 NMQF Summit on Health Disparities, see details below.
3. Value Our Health Map on QALYs Around the World, click here to view the map.
4. PCORI Announces New Board of Governors Members, click here to read the press release.
5. PCORI Proposed Principles for the Consideration of the Full Range of Outcomes Data and Webinar Series, see details below.
6. SWHR Migraine Patient Toolkit: Living Well with Migraine, click here to view the toolkit.
7. ADA 25 Advancing Leadership Forum on Disability Justice in the Fight for Racial Equity, click here to learn more and register.
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, Bladder Cancer, Opioid Treatments, High Cholesterol, Anemia in Chronic Kidney Disease, Lupus Nephritis, Multiple Myeloma, Alzheimer's 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 and the EveryLife Foundation for Rare Diseases Partner to Release a New White Paper Evaluating the Use of Value Assessments for Cell and Gene Therapies, click here to read the paper.
2. Most Favored Nations Executive Order Released Last Week Would Import Discriminatory QALYs, see details below.
3. PCORI Proposed Principles for the Consideration of the Full Range of Outcomes Data, click here to read the principles and to submit comments.
4. ADA 25 Advancing Leadership Forum on Disability Justice in the Fight for Racial Equity, click here to learn more and register.
5. The Bonnell Foundation Discusses Access Challenges for Cystic Fibrosis Patients Abroad, click here to listen to the podcast.
6. NMQF, Axis Advocacy, Sick Cells, and PIPC Release a White Paper on Value Assessments' Impact on Health Inequities, click here to read the paper.
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, Anemia in Chronic Kidney Disease, Lupus Nephritis, Multiple Myeloma, 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 and the EveryLife Foundation for Rare Diseases Partner to Release a New White Paper Evaluating the Use of Value Assessments for Cell and Gene Therapies, click here to read the paper.
2. Most Favored Nations Executive Order Released Last Week Would Import Discriminatory QALYs, see details below.
3. PCORI Proposed Principles for the Consideration of the Full Range of Outcomes Data, click here to read the principles and to submit comments.
4. ADA 25 Advancing Leadership Forum on Disability Justice in the Fight for Racial Equity, click here to learn more and register.
5. The Bonnell Foundation Discusses Access Challenges for Cystic Fibrosis Patients Abroad, click here to listen to the podcast.
6. NMQF, Axis Advocacy, Sick Cells, and PIPC Release a White Paper on Value Assessments' Impact on Health Inequities, click here to read the paper.
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, Anemia in Chronic Kidney Disease, Lupus Nephritis, Multiple Myeloma, 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.  

An article for MedPage Today highlighted Partnership to Improve Patient Care's (PIPC) opposition to the Trump administration’s executive order that would import discriminatory quality-adjusted-life-years metrics into the U.S. PIPC Chairman Tony Coelho’s noted that the discriminatory metrics that the order is set to adopt would  “devalue the lives of seniors, people with disabilities and serious chronic conditions." "Other countries use these metrics to ration healthcare,” said Chairman Coelho. “It is dangerous to import foreign pricing policies, and the associated access barriers that come with them."

In This Week’s Issue:
 
1. Most Favored Nation’s Executive Order Released Yesterday Would Import Discriminatory QALYs, see details below.
2. The Bonnell Foundation Discusses Access Challenges for Cystic Fibrosis Patients Abroad, click here to listen to the podcast.
3. NMQF, Axis Advocacy, Sick Cells, and PIPC Release a White Paper on Value Assessments' Impact on Health Inequities, click here to read the paper.
4. AAPD, NCD, and NCIL Caution About the Discriminatory Implications of the QALY and Foreign Reference Pricing, click here to view the webinar.
5. IVI Unveils New Major Depressive Disorder Value Assessment Initiative, click here to read more.
6. Advocates Call for Focus on People with Disabilities in Vaccine Allocation Framework, see details below.
7. International News: What Happens in Countries Using QALYs and Cost-Based Thresholds to Determine Coverage? See below for more.
8. PCORI Annual Meeting September 16-17, click here to learn more and to register.
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, Lupus Nephritis, Multiple Myeloma, 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 the text of an Executive Order allowing the Department of Health and Human Services (HHS) to rely on foreign governments to set prices for drugs covered under Medicare, regardless of the metrics used by those countries or implications for access to care for patients. The Partnership to Improve Patient Care (PIPC), along with other prominent patient and disability advocacy groups, has consistently expressed strong opposition to this concept, as it will have the impact of limiting and delaying access to needed treatments for Americans. 

In This Week’s Issue:
 
1. NMQF, Axis Advocacy, Sick Cells, and PIPC Release a White Paper on Value Assessments' Impact on Health Disparities, click here to read the paper.
2. Advocates Call for Focus on People with Disabilities in Vaccine Allocation Framework, see details below.
3. AAPD, NCD, and NCIL Caution About the Discriminatory Implications of the QALY and Foreign Reference Pricing, click here to view the webinar.
4. Proposed 'Most Favored Nations' Order Would Import Discriminatory Value Assessments, see details below.
5. International News: What Happens in Countries Using QALYs and Cost-Based Thresholds to Determine Coverage? See below for more.
6. PCORI Annual Meeting September 16-17, click here to learn more and to register.
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, Lupus Nephritis, Multiple Myeloma, 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. AAPD, NCD, and NCIL Caution About the Discriminatory Implications of the QALY and Foreign Reference Pricing, click here to view the webinar.
2. Proposed 'Most Favored Nations' Order Would Import Discriminatory Value Assessments, see details below.
3. New Patient-Centered Research Agenda for Personalized Medicine, click here to read the report.
4. National Academy of Medicine Framework for COVID-19 Vaccine Allocation, see details below.
5. Canadian Cystic Fibrosis Advocate Cautions Americans Against Importing Foreign Drug Pricing Policies, click here to read the blog post.
6. Opinion: Global Pharmaceutical Models Would Destroy U.S. Innovation, click here to read the op-ed.
7. International News: What Happens in Countries Using QALYs and Cost-Based Thresholds to Determine Coverage? See below for more.
8. PCORI Annual Meeting September 16-17, click here to learn more and to register.
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, Lupus Nephritis, 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. Proposed 'Most Favored Nations' Order Would Import Discriminatory Value Assessments, see details below.
2. Canadian Cystic Fibrosis Advocate Cautions Americans Against Importing Foreign Drug Pricing Policies, click here to read the blog post.
3. National Council on Independent Living Resolution on QALYs, see details below.
4. Opinion: Global Pharmaceutical Models Would Destroy U.S. Innovation, click here to read the op-ed.
5. International News: What Happens in Countries Using QALYs and Cost-Based Thresholds to Determine Coverage? See below for more.
6. Patients Say USPS Slowdown is Delaying Delivery of Life-Saving Medications, click here to read the article.
7. PCORI Annual Meeting September 16-17, click here to learn more and to register.
8. 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, Lupus Nephritis, 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. 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. International News: What Happens in Countries Using QALYs and Cost-Based Thresholds to Determine Coverage? See below for more.
4. STAT News: Disability Advocacy Gains Traction in Presidential Politics, click here to read the article.
5. AARDA’s Randy Rutta Talks Step Therapy, click here to read the full interview.
6. PCORI Annual Meeting September 16-17, click here to learn more and to register.
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, Lupus Nephritis, 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. 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.