1. You're Invited! The Perils of QALYs Event at the Coehlo Center in Los Angeles May 20, click here for more information and click here to RSVP.
2. 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.
3. PIPC Advises California LAO to Avoid Discriminatory Value Assessment Metrics, click here to read the letter.
4. National Partnership for Women & Families Publishes Consensus-Driven Framework for Addressing Social Determinants of Health, click here to view the framework on Medium and here to link to the printable version.
5. MacIver Institute Issue Brief on the Problems with QALYs, click here to read the brief.
6. Op-Ed: Let’s Keep Patient-Centered Solutions at the Forefront of Health Care Policies, click here to read the op-ed.
7. PIPC Comments on ICER's Treatment-Resistant Depression Study, click here to read the letter.
8. PIPC Chairman Tony Coehlo Headlines Headache and Migraine Policy Forum Panel, 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 Studies: Type 2 Diabetes, Arthritis, Cardiovascular Disease, Depression, MS, Duchenne Muscular Dystrophy, Peanut Allergy, click here to provide patient input.
11. AUCD: Submit a Proposal for 2019 Conference! Click here for more information.
12. Submit 2019 Fly-ins, Advocacy Days, and Conferences to Democratic Caucus, click here to submit your events.
13. Upcoming Events and Webinars, see details below.
14. Medical Journal Articles, see details below.
15. AHRQ Effective Program Updates, see details below.
On Monday, May 20, PIPC and the Coehlo 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 Coehlo 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 Coehlo. Click here for more information and click here to RSVP.
2. 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.
3. PIPC Advises California LAO to Avoid Discriminatory Value Assessment Metrics
In a letter to the California Legislative Analyst’s Office (LAO), Partnership to Improve Patient Care (PIPC) Chairman Tony Coelho provided feedback on the LAO’s recent report entitled “The 2019-20 Budget: Analysis of the Carve Out of Medi-Cal Pharmacy Services From Managed Care.” While PIPC shares concerns emphasized in the report about affordability of health care for patients and people with disabilities, Chairman Coelho strongly encouraged the state to avoid the use of discriminatory cost-effectiveness analysis for preference of drugs and as reference for spending caps. He emphasized that these analyses ultimately employ discrimination and restricted access as a means to lower costs. “In the end, policies that prevent patients and people with disabilities from getting the right care at the right time based on their unique characteristics and priorities adversely impact health and increase costly adverse events such as hospitalizations,” wrote Chairman Coelho. “Therefore, we reject any approach that fails to consider the implications for discrimination and adverse health outcomes in its analysis of the formal use of cost-effectiveness analysis for preference of drugs in Medi-Cal and use of a drug spending cap, similar to the State of New York.” Click here to read the letter.
4. National Partnership for Women & Families Publishes Consensus-Driven Framework for Addressing Social Determinants of Health
The Partnership to Improve Patient Care (PIPC) is pleased to support a Framework for Addressing Social Determinants of Health. As stated by the framework, efforts to address the social determinants of health and to achieve health equity should be person-, family- and community-centered and reflect the perspectives, preferences, and decision-making of individuals and communities most affected. We appreciate the framework’s recognition that implementing equity-driven measurement and evaluation must go beyond cost effectiveness. PIPC strongly agrees that evaluation and measurement limited to cost-effectiveness or short-term return on investment will not adequately capture the return on upstream investments to improve long-term health. Click here to view the framework on Medium and here to link to the printable version.
5. MacIver Institute Issue Brief on the Problems with QALYs
Wisconsin's MacIver institute came out with an issue brief outlining how the use of QALYs hurts patients. "The quality-adjusted life year methodology assigns a dollar value to each additional year of a person’s life if it was lived at 100 percent health. It’s a highly subjective determination that values each year of remaining life of those living at less than optimum health to be worth less than the remaining life of other people. Under this approach, the lives of people living with cancer or with disabilities are quite literally devalued. ICER’s cost-versus-benefit analysis of potentially life-saving drugs is dependent on whether the cost to cover a certain drug would exceed the value to society of a patient living one more year, according to ICER’s quality-adjusted life year calculation. Giving a non-elected, unaccountable entity such divine and absolute power over the lives of Americans is unnerving and raises all sorts of moral questions," wrote the Institute's Chris Rochester. Click here to read the brief.
6. Op-Ed: Let’s Keep Patient-Centered Solutions at the Forefront of Health Care Policies
Policies like the one recently finalized in the New York State budget that rely on QALYs to make healthcare decisions "would threaten patient access to breakthrough treatments and interfere with patients and doctors deciding what treatment is best based on what an individual prefers or needs," writes Randall Rutta, former President and CEO of Easter Seals. "Before we move closer as a nation toward these discriminating methods in our health care system, we must consider the merit of further development of patient-centered solutions that encourage individual choice and engagement in their own health, care, treatment and coverage.” Click here to read the op-ed.
7. PIPC Comments on ICER's Treatment-Resistant Depression Study
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 for Treatment-Resistant Depression (TRD). The letter offers criticism of ICER's model for inaccurately accounting for the cost burden of TRD, as well as ICER's misleading estimates on mortality rates associated with the disease. Chairman Coelho encouraged ICER to abandon discriminatory value assessment metrics such as the Quality-Adjusted-Life-Year (QALY), and instead focus on outcomes that truly matter to patients. "As the National Alliance on Mental Illness (NAMI) highlighted in its November comment letter to ICER, individuals with treatment resistant depression (TRD) are in desperate need of treatments that offer fast, effective relief," wrote Chairman Coelho. "The ICER model fails to capture the value of the treatment’s immediate impact. For patients, the ability to quickly get back to work and their families is invaluable." Click here to read the letter.
8. PIPC Chairman Tony Coehlo Headlines Headache and Migraine Policy Forum Panel
The Headache and Migraine Policy Forum held a panel discussion on Capitol Hill featuring patients, advocates, and policy experts to explore how people living with migraine diseases can sustain employment. "PIPC Chairman Tony Coehlo delivered the event’s keynote address. 'You’re all covered by the [Americans with Disabilities Act],' Mr. Coelho announced to a crowded room of headache advocates. 'I know,' he emphasized, 'because I wrote it.' The former representative from California has dealt with epilepsy throughout his life, spurring his leadership on disability issues. He authored the landmark Americans with Disabilities Act while serving in Congress and today chairs the advocacy group Partnership to Improve Patient Care. Mr. Coelho shared his past struggles and encouraged the advocates present to use their own stories to spur members," wrote the Headache and Migraine Policy Forum in their summary of the event. Click here to read more.
9. 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.
- New Zealand: After an inquiry into PHARMAC was blocked, breast cancer advocates are speaking out. Click here, here, and here to learn more. Breast cancer patients are not receiving access to to life-saving medications. As a result of widespread criticism, PHARMAC is set to review its practices of breast cancer drug funding. Click here to read more. PHARMAC has claimed to cover a breast cancer treatment that it does not cover. Patients in New Zealand also face barriers to access for treatment of spinal muscular atrophy. Click here and here to read more. New Zealand advocates unfavorably compare its cancer drug coverage to other countries. A treatment for CLN2 Batten's disease is not covered in New Zealand despite being considered a lifesaving drug in Australia. Patients in New Zealand face barriers to obtaining drugs to treat rare cancers.
- Canada: Discriminatory cost effectiveness measures are blocking access to care for patients with spinal muscular atrophy patients. Click here to read more. Click here to view the story of a child with thyroid cancer forced to come to the U.S. for care, and here for an article about high costs of Parkinson's and MS treatments. 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: English families are moving to Scotland in an attempt to access needed cystic fibrosis drugs. The elderly are going blind as the NHS ignores advice to end cataract surgery rationing. Epilepsy Society calls for review of UK supply chain following "steep rise" in access issues. Activists are fighting for access to treatments for cystic fibrosis and cancer. Click here for an article related to cystic fibrosis. Click here and here to read about the fight for access to cancer drugs in Scotland. Click here for an article related to MS. 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.
- France: Patients are alarmed as a multiple sclerosis drug will no longer be covered.
10. 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: Public Comment period OPEN through 5/1/2019 on Draft Scoping Document. Meeting 10/31/2019: CTAF to an update to its 2017 rheumatoid arthritis assessment.
- Type 2 Diabetes: Open Input Period through 4/29/2019 (TODAY). Draft Scoping Document 5/2/2019. 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: 5/9/2019: Evidence Report. Meeting 5/23/2019: Midwest CEPAC to review evidence on esketamine as a therapy for treatment-resistant depression.
- Multiple Sclerosis: 5/2/2019: Evidence Report. 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. Public Comments OPEN through May 8, 2019. 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.
11. 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. Click here for more information.
12. 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.
13. Upcoming Events and Webinars
2019 Triangle Comparative Effectiveness Symposium
May 7, 2019
Click here for details.
Cycle 2 2019 Improving Methods Applicant Town Hall
May 9, 2019
Click here for details.
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.
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.
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.
A New Path Forward for Using Real World Evidence in Randomized Clinical Trials
June 23, 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.
14. Medical Journal Articles
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.
15. AHRQ Effective Program Updates
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.
Systematic Review: Adverse Effects of Pharmacological Treatments of Major Depression in Older Adults, click here to view.
Comment Period: Management of Primary Headaches in Pregnancy, click here to view.
Nonopioid Pharmacologic Treatments for Chronic Pain, click here to view.
Systematic Review Update: Noninvasive Nonpharmacologic Treatments for Chronic Pain, click here to view.