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  • Home
  • About
    • Mission and Priorities
    • Meet the Chairman
    • Steering Committee
    • PIPC Member List
    • Contact
  • The Issues
    • Value Our Health
    • International
    • Where We Stand
    • Value Assessment Frameworks
    • Engaging Patients in Value-Based Payment
    • Patient-Centeredness in Research
  • Resources
    • Advocacy
    • Letters and Comments
    • PCORI Meeting Transcripts
    • Polling
    • Roundtables
    • White Papers
  • Blog
    • PIPC Patients' Blog
    • Chairman's Corner
    • PIPC Weekly Update
    • The Data Mine
  • Newsroom
    • PIPC in the News
    • Press Releases
    • Open Letter: We Deserve a Voice
  • Events
    • PIPC Forum 2022
    • Discrimination & Health Care
    • C & GT Webinar
    • ICER COVID Webinar
    • Value Our Health Briefing
    • QALY Briefing
    • QALY Panel
    • Past Webinars >
      • ICER SCD Webinar
      • VOH Sickle Cell Webinar
      • Rare Disease Webinar
      • QALY Webinar
      • PCORI Advocacy Webinar
      • APM Webinar
      • Patient Empowerment Webinar
      • Value Assessments Briefing
    • Past PIPC Forums >
      • 2021
      • 2020
      • 2019
      • 2018
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      • 2015
      • 2014
      • 2013
      • 2012
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The PIPC Blog

PIPC Weekly Update: March 30, 2020

3/30/2020

 
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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.  


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PIPC Weekly Update: March 23, 2020

3/23/2020

 
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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.  


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PIPC Weekly Update: March 16, 2020

3/16/2020

 
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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.  


Read More

PIPC Weekly Update: March 9, 2020

3/9/2020

 
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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.  


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PIPC Patient Blog: Migraine Patients Deserve Access to Needed Treatments

3/5/2020

 
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By: Jaime Sanders 
​

​​I am a mother, wife, and patient advocate living with intractable migraine. I am allergic to or do not tolerate many standard migraine treatments, and the pain management options I am left with are extremely limited. Despite a comprehensive strategy to manage my migraine and taking four preventative medications, I am in pain every, single day. Living with migraine disease carries a huge burden. It has forced me to leave the work force and my husband and children to be caregivers. 

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PIPC Weekly Update: March 2, 2020

3/2/2020

 
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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.  


Read More

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