​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. Pioneer Institute: ICER's Methods Are Likely Illegal under the ADA, click here to read the report.
2. Massachusetts Finalizes Value Assessment Regulations, see details below.
3. ICER's Oral Semaglutide Model Exists in an Imaginary World, click here to read the article.
4. Patients and People with Disabilities Remain Concerned about Importing QALYs From Other Countries, see details below.
5. Administration’s Medicaid Initiative Would Invite Closed Formularies, Implicate Use of QALYs, see details below.
6. A Trusting Relationship is Crucial to Bridge the Gap Between Quality Metrics and Real Life, click here to read the article (subscription needed).
7. ICER Releases Revised Value Assessment Framework for 2020, 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, Beta Thalassemia, Acute Migraine, 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. 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.  

​On February 5, 2020, the Massachusetts Health Policy Commission (HPC) finalized regulations outlining their approach to assessing the value of prescription drugs. As groups representing patients and people with disabilities, the affordability of health care is a significant priority. That being said, HPC’s regulations put patient access at risk, and may ultimately do more harm than good for patients. They set the stage for third-party analyses by groups like the Institute for Clinical and Economic Review (ICER) and rely on international reference pricing, which relies on QALY-based assessments in determining the “value” of treatments. 

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.  

​On Jan. 31, the Institute for Clinical and Economic Review (ICER) released its final revisions to its value assessment framework. The document describes changes in ICER’s process, including creating a formal process for incorporating new evidence that emerges after the assessment, standardizing cost-effectiveness thresholds across reviews, and increasing the incorporation of real-world evidence.

Is the life of a person with a disability or chronic condition less valuable than the life of a person without one? There is renewed interest among lawmakers to tackle healthcare costs, specifically, the rising cost of prescription drugs. However, the Administration’s proposed International Pricing Index (IPI) model, an initiative proposed in 2018 that would arbitrarily base prices of American medications off the government set prices of medications in foreign countries, is deeply flawed. Yet, we may see some version of it reintroduced soon.

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.  

The National Council on Disability (NCD)’s report to President Donald Trump on Quality-Adjusted Life Years and the Devaluation of Life with a Disability provides a timely understanding and perspective of the implications of QALYs. This report will be an essential tool for advocates, coming from an independent, nonpartisan federal agency charged with advising the President, Congress, and other federal agencies regarding policies, programs, practices, and procedures that affect people with disabilities. 

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. 

​The Friends of PCORI Reauthorization coalition applauds the action taken today to extend funding for the Patient-Centered Outcomes Research Institute (PCORI) for an additional ten years. PCORI is an independent organization authorized by the “Patient Protection and Affordable Care Act of 2010” to study how different medications and treatments compare, so patients and their caregivers have the information they need to choose the health care and treatment options that are best for them. The passage of H.R. 1865 shows Congress’ commitment to ensure continued support for critical research helping patients and providers make evidence-based health care decisions that work best for them.

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