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The PIPC Blog

PIPC Weekly Update: May 13, 2019

5/13/2019

 
Picture
In This Week’s Issue:
 
1. PIPC Submits Comment Letter to ICER on Peanut Allergy Draft Evidence Report, click here to read the letter.
2. ICER Seeks Public Input for 2020 Value Assessment Framework, click here for more information and to comment.
3. You're Invited! The Perils of QALYs Event at the Coelho Center in Los Angeles May 20, click here for more information and click here to RSVP.
4. Policy Briefing in Sacramento on May 15: Are Value Assessments In Healthcare a New Form of Discrimination?, click here for more information and click here to RSVP.
5. International News: What Happens in Countries Using QALYs and Cost-Based Thresholds to Determine Coverage? See below for more. 
6. ICER Studies: Type 2 Diabetes, Arthritis, Cardiovascular Disease, Depression, MS, Duchenne Muscular Dystrophy, Peanut Allergy, click here to provide patient input.
7. PCORI Board of Governors Meeting, click here to view the agenda and click here to register and attend the meeting by teleconference.
8. National Health Council on Measuring Patient Experience, click here to read the blog post and click here to watch the webinar.
9. Friends of PCORI Reauthorization Letter of Support, see below for details.
10. CMS Webinar: Reintroducing the eCQI Resource Center, click here to register.
11. NVHR Hepatitis C Patient Summit, click here to apply to the patient summit.
12. AUCD: Submit a Proposal for 2019 Conference! Click here for more information.
13. Submit 2019 Fly-ins, Advocacy Days, and Conferences to Democratic Caucus, click here to submit your events.
14. Upcoming Events and Webinars, see details below.
15. Medical Journal Articles, see details below.
16. AHRQ Effective Program Updates, see details below.  

1. PIPC Submits Comment Letter to ICER on Peanut Allergy Draft Evidence Report
 
In a letter to the Institute for Clinical and Economic Review (ICER), Partnership to Improve Patient Care (PIPC) Chairman Tony Coelho provided feedback on ICER's draft evidence report on treatments for peanut allergy. Chairman Coelho was critical of ICER for overlooking patient input and preferences in favor of the discriminatory quality-adjusted-life-years (QALY) metric, noting that the use of the QALY does not help patients with peanut allergies and their caregivers mitigate burden. He also noted that ICER's model does not account for the complexities of peanut allergy conditions. "ICER continues to use one-size-fits-all models and limited data that do not capture the complexities of different patient populations in their assessments of innovative medical products," wrote Chairman Coelho. "PIPC echoes the Asthma and Allergy Network, the Asthma and Allergy Foundation of America, and other patient advocacy groups that have implored ICER to acknowledge that patients are unique individuals with different preferences who respond differently to treatments." Click here to read the letter.
 
2. ICER Seeks Public Input for 2020 Value Assessment Framework
 
As part of its biannual process of revising its value assessment framework, ICER is seeking public comment on potential changes to improve its process. This is an important opportunity for patients and people with disabilities to tell ICER that one-size-fits-all conceptions of "value" ignore what is important to them. Specifically, the use of QALYs discriminates against older people and people with disabilities, and it has no place in determining the value of treatments. ICER is specifically seeking comment on the QALY and its cousin, the equal-value life year gained (evLYG) metric. PIPC looks forward to working with its partners to develop comments that will highlight for ICER how the use of QALYs and evLYGs devalues their lives, with suggestions on addressing the methodological flaws in its current model. ICER is accepting comments through June 10, 2019, and plans to publish draft changes to its framework based on comments received on August 16th. Click here for more information and to comment.
 
3. You're Invited! The Perils of QALYs Event at the Coelho Center in Los Angeles on May 20
 
On Monday, May 20, PIPC and the Coelho Center on Disability Law, Policy, and Innovation will host an event in Los Angeles entitled "The Perils of QALYs: Addressing discrimination against people with disabilities and serious chronic conditions." PIPC and the Coelho Center invite people with disabilities, patients, seniors, families, individuals experiencing disparities in care, providers and advocates to join our esteemed panel to learn about value assessments, their potential for discrimination, and related public policy threats at the federal and state level. "This event will arm advocates with the information they need to oppose discriminatory measures in public programs, like Medicaid, and defend access to care for all. We hope you will join us in advocating for policymakers to Value Our Health!" wrote PIPC Chairman Tony Coelho. Click here for more information and click here to RSVP.
 
4. Policy Briefing in Sacramento on May 15: Are Value Assessments In Healthcare a New Form of Discrimination?
 
The Partnership to Improve Patient Care (PIPC), California Partnership for Access to Treatment (CPAT), and the ALS Association (Greater Sacramento Chapter), invites people with disabilities, patients, seniors, families, individuals experiencing disparities in care, providers, advocates, and any interested groups to join our experts to learn about value assessments, their potential for discrimination, and related public policy threats at the federal and state level. The briefing will be held on May 15, 2019 at the Sheraton Grand Sacramento Hotel in Sacramento, California. Click here for more information and click here to RSVP.
 
5. International News: What Happens in Countries Using QALYs and Cost-Based Thresholds to Determine Coverage?
 
Other countries are often referenced as examples of how the use of QALYs or similar cost-based thresholds impact access to care. 
 
  • Australia: An immigrant child with cystic fibrosis and his family may face deportation due to the cost of treating the disease.
 
  • New Zealand: Patients are hoping that PHARMAC will fund an SMA treatment and say that the organization's policies on rare diseases do not work. Click here to read more. Patients are losing hope that "life-changing" breast cancer drugs will be covered by PHARMAC. Click here, here, and here for more. Patients with lung cancer and melanoma are being denied drugs that will prolong their lives.
 
  • Canada: Two Ontario brothers suffer from cystic fibrosis, but only one will receive Orkambi, a potentially lifesaving drug. Although Ontario said it would cover Orkambi for patients who need it, very few patients will be eligible. Click here to read more. Click here for a story about a patient with spinal muscular atrophy whose province does not cover the drug she needs.
 
  • Netherlands: Cost effectiveness measures are blocking access to cystic fibrosis treatments for children. It also remains unavailable for adults because the government has failed to reach an agreement. Click here to read more.
 
  • United Kingdom: Click here and here for articles on the impact of the NHS's denial of needed cystic fibrosis drugs. English families are moving to Scotland in an attempt to access needed cystic fibrosis drugs. Patients are fighting for access to multiple sclerosis drugs in Scotland. Click here for an article about the fight for access to spinal muscular atrophy drugs. Click here for an article about a patient who was denied access to a treatment that she helped test. Click here for an article about the need for NHS to fund drugs to treat rare diseases.
 
  • France: Patients are alarmed as a multiple sclerosis drug will no longer be covered.
 
6. ICER Studies: Type 2 Diabetes, Arthritis, Cardiovascular Disease, Depression, MS, Duchenne Muscular Dystrophy, Peanut Allergy
 
The Institute for Clinical Economic Review (ICER) conducts cost effectiveness studies for insurers using the cost-per-QALY methodology. ICER provides guidance on its website for patients and patient advocates to provide direct input related to their experiences with the disease. Click here to provide patient input. Click here to view the topics and deadlines. Please note the following upcoming formal ICER deadlines per their website:
 
  • Arthritis: Revised Scoping Document available. 6/14/2019: Research Protocol. Meeting 10/31/2019: CTAF to an update to its 2017 rheumatoid arthritis assessment.
 
  • Type 2 Diabetes: Draft Scoping Document now available, public comment open through 5/22/2019. Meeting 11/14/2019: The New England CEPAC will convene to deliberate on ICER's review of oral semaglutide for the treatment of type 2 diabetes.
 
  • Cardiovascular Disease :  5/20/2019: Research Protocol. 9/26/2019 Meeting: Midwest CEPAC to deliberate and vote on ICER's report on evidence presented in ICER's report on additive CVD therapies.
 
  • Depression: Evidence Report and Meeting Agenda available. Meeting 5/23/2019: Midwest CEPAC to review evidence on esketamine as a therapy for treatment-resistant depression.
 
  • Multiple Sclerosis: Evidence Report and Meeting Agenda available. Meeting 5/23/2019: Midwest CEPAC to review ICER's assessment of siponimod (Novartis) for secondary progressive multiple sclerosis.
 
  • Peanut Allergy: Draft Evidence Report available. 5/28/2019: Responses to public comments. Meeting 6/11/2019: CTAF to review ICER's assessment of treatments for peanut allergy.
 
  • Duchenne Muscular Dystrophy: 5/22/2019: Draft Evidence Report. Meeting 7/25/2019: New England CEPAC to deliberate and vote on evidence presented in ICER's report on treatments for Duchenne muscular dystrophy.
 
  • Unsupported Price Increase Assessment: 10/8/2019: Final Report.
 
7. PCORI Board of Governors Meeting
 
PCORI is holding a Board of Governors meeting on Monday, May 15. Patients and advocates are welcome to join the meeting by teleconference, and PCORI will solicit public comment near the end of the meeting. Among other topics, the Board of Governors will discuss PCORI's research portfolio, with a special emphasis on telehealth. Click here to view the agenda and click here to register and attend the meeting by teleconference.
 
8. National Health Council on Measuring Patient Experience
 
The National Health Council (NHC) held a webinar discussing the differences between patient-reported outcomes (PROs) and patient preferences and why both are important. "PROs and patient preference studies are two different, but complementary ways of capturing patients’ experiences. PROs provide insights on how patients feel and function in their everyday lives, whereas preferences reflect what patients choose when presented with different options," writes the NHC's Silke Schoch. "Understanding the difference between these two different types of data is key for the patient community as regulators and other health care stakeholders are increasingly interested in both to inform their decision-making." Click here to read the blog post and click here to watch the webinar.
 
9. Friends of PCORI Reauthorization Letter of Support
 
Last week, 169 organizations and 42 PCORI Ambassadors sent a letter to leads in the House of Representatives and the Senate articulating their support for reauthorization of the Patient-Centered Outcomes Research Institute (PCORI). The letter states, "Our health care system requires solutions that are both evidence-based and patient-centered, to improve care while also addressing health care spending. PCORI is uniquely set up to meet this challenge, as it is the only organization dedicated to funding comparative clinical effectiveness research (CER) studies comparing which treatment approaches work best, for which patients, given their needs and preferences. The goal is to help health care providers and payers better understand health care treatment options and to help patients and those who care for them make better informed health and health care decisions. Delivering care that is most clinically effective and incorporates outcomes that matter to patients is both cost effective and essential to our well-being as a nation." The letter will be made available later today here.
 
10. CMS Webinar: Reintroducing the eCQI Resource Center
 
The Centers for Medicare & Medicaid Services (CMS) is holding a webinar to re-introduce users to its Electronic Clinical Quality Improvement (eCQI) Resource Center, a repository for the most current resources to support electronic clinical quality improvement. Join CMS for a demonstration on May 22, 2019 to tour the website and learn about topics related to the development, testing, implementation, and reporting of electronic Clinical Quality Measures (eCQMs) used in CMS programs. Click here to register.
 
11. NVHR Hepatitis C Patient Summit
 
The National Viral Hepatitis Roundtable (NVHR) will be hosting a hepatitis C patient summit July 29-30th 2019 in Atlanta, timed with World Hepatitis Day on July 28th. The summit - NVHR’s first national patient gathering - will bring together 100 patients recently cured of or currently living with Hepatitis C who have had limited experience engaging in other advocacy programs. Click here to apply to the patient summit.
 
12. AUCD: Submit a Proposal for 2019 Conference!
 
The AUCD Conference welcomes proposals to highlight the work of the disability community. Over 200 different presentations will be accepted to the conference in several different types of sessions, formatted for maximum visibility and interaction with attendees. Proposals are encouraged from students, self-advocates, family leaders, clinicians, and researchers in over 25 topics. Proposals are due on May 24, 2019. Click here for more information.
 
13. Submit 2019 Fly-ins, Advocacy Days, and Conferences to Democratic Caucus
 
In the interest of amplified patient and stakeholder engagement, your organization may be interested that the House Majority Leader’s office is compiling a list of fly-ins, advocacy days, and conferences that will be taking place throughout the year. This information will be shared with all House Democratic offices and used for a variety of purposes including scheduling and messaging. Feel free to share any events you have planned. If we hear of similar efforts by the Minority Leader, we hope to share that as well. Please submit your events here.
 
14. Upcoming Events and Webinars 
 
PCORI Board of Governors Meeting
May 13, 2019
Click here for details.
 
Policy Briefing: Are Value Assessments in Healthcare A New Form of Discrimination?
May 15, 2019
Click here for details.
 
Advisory Panel on Clinical Trials Spring 2019 Meeting
May 15, 2019
Click here for details.
 
Cycle 2 2019 PCORI Broad PFA Applicant Town Hall
May 15, 2019
Click here for details.
 
Advisory Panel on Healthcare Delivery and Disparities Research Spring 2019 Meeting 
May 16, 2019
Click here for details.
 
2019 ISPOR Conference
May 18-22, 2019
Click here for details.
 
The Perils of QALYs: Addressing discrimination against people with disabilities and serious chronic conditions
May 20, 2019
Click here for details.
 
MACRA Information Session: Reintroducing the eCQI Resource Center
May 22, 2019
Click here for details.
 
2019 NEC Symposium
June 2 - 5, 2019
Click here for details.
 
Advisory Panel on Clinical Effectiveness, and Decision Science Spring 2019 Meeting
June 14, 2019
Click here for details.
 
Understanding FDA’s Real-World Evidence Program: A Presentation of the AMIA Public Policy Committee
June 21, 2019
Click here for details.
 
A New Path Forward for Using Real World Evidence in Randomized Clinical Trials
June 23, 2019
Click here for details.
 
NVHR Hepatitis C Patient Summit
July 29-30, 2019
Click here for details.
 
2019 PCORI Annual Meeting
September 18-20, 2019
Click here for details.
 
2019 AUCD Annual Meeting
November 17-20, 2019
Click here for details.
 
15. Medical Journal Articles
 
Study Verifies Value of Real-World Evidence, click here to view.
 
A Framework for Aiding the Translation of Scientific Evidence into Policy: The Experience of a Hospital-Based Technology Assessment Unit, click here to view.
 
Multi-Criteria Decision Analysis for Health Technology Assessment: Addressing Methodological Challenges to Improve the State of the Art, click here to view.
 
Novel Therapies for an Aging Population: Grappling With Price, Value, and Affordability, click here to view.
 
How Well Does the Patient-Centered Outcomes Research Institute Fund Primary Care and Comparative Effectiveness Research?, click here to view.
 
Addressing Health System Values in Health Technology Assessment: The Use of Evidence-Informed Deliberative Processes, click here to view.
 
Launch of AHRQ's Systematic Review Data Repository (SRDR)+, click here to view.
 
Knowledge and Use of Evidence-Based Medicine in Daily Practice by Health Professionals: A Cross-Sectional Survey, click here to view.
 
Quantifying Preferences in Drug Benefit-Risk Decisions, click here to view.
 
Raising the Impact of Real World Evidence, click here to view.
 
Why and How to Use Patient-Oriented Research to Promote Translational Research, click here to view.
 
16. AHRQ Effective Program Updates
 
Key Questions: Cervical Ripening in the Outpatient Setting, click here to view.
 
Key Questions: Radiation Therapy for Brain Metastases, click here to view.
 
Protocol: A Rapid Evidence Review of Retention Strategies for Medications for Addiction Treatment (MAT) in Adults with Opioid Use Disorder, click here to view.
 
Systematic Review: Diagnosis and Treatment of Clinical Alzheimer's-type Dementia (CATD), click here to view.
 
Systematic Review: Comparative Effectiveness of Analgesics to Reduce Acute Pain in the Prehospital Setting, click here to view.
 
Systematic Review: Long-Term Drug Therapy and Drug Holidays for Osteoporosis Fracture Prevention, click here to view.
 
Systematic Review: Telehealth for Acute and Chronic Care Consultations, click here to view.
 
White Paper: Standardized Library of Asthma Outcome Measures, click here to view.
 
Research Protocol: Characteristics of Existing Asthma Self-Management Education Packages, click here to view.
 
Systematic Review: Can Physical Activity Improve the Health of Wheelchair Users?, click here to view.
 
Comment Period: Registries for Evaluating Patient Outcomes: A User's Guide: Fourth Edition, click here to view.
 
Treatment of Acute Pain: An Evidence Map, click here to view.
 
Systematic Review: Pharmacologic and Non-pharmacologic Therapies in Adult Patients with Acute Exacerbation of COPD, click here to view.
 
Integrating Palliative Care With Chronic Disease Management in Ambulatory Care, click here to view. 

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