Partnership to Improve Patient Care

  • 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
      • 2017
      • 2016
      • 2015
      • 2014
      • 2013
      • 2012
      • 2011
      • 2010
  • 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
      • 2017
      • 2016
      • 2015
      • 2014
      • 2013
      • 2012
      • 2011
      • 2010

Resource Center

New York Budget Threat for Patients and People with Disabilities

3/19/2019

 
As detailed in a recent letter from PIPC, CancerCare, and over 40 other advocacy organizations, there is widespread opposition to the use of third party value assessments, especially those relying on quality-adjusted-life-years (QALYs) and similar metrics, as the basis for denying or restricting access to care in the State of New York. The letter makes clear that patients and people with disabilities oppose one-size-fits-all definitions of value being used to create arbitrary thresholds in state healthcare systems, especially when they rely on discriminatory methods, such as the quality-adjusted-life-year (QALY).
First, some good news: When the New York Senate Budget bill was recently released, it reflects that our voices are being heard.  While continuing to authorize the use of cost effectiveness studies, it does not allow for use of assessments that "utilize a measure that discounts the value of a life because of an individual’s disability or age…”.  Additionally, it seeks to eliminate use of biased assessments by not allowing a third party supplying information to receive funding from the pharmaceutical industry or health insurance industry.  And lastly, any assessment relied upon must be made available to the public, including methodologies and models, disclose assumptions made, and present results in a manner reflecting differential outcomes for subpopulations.

Now, the bad news.  Unfortunately, the New York Assembly included a  provision in their budget proposal similar to the provision we opposed in our letter. The Assembly bill does not preclude the use of a discriminatory metric for determining the value of treatments, and while referencing quality of life, does not require its assessment through diagnosis or domain-specific measures.  As drafted, the language would allow for the use of a QALY which measures disabled life as worth less than non-disabled, particularly would allow for use of cost-per-QALY assessments of value conducted by the Institute for Clinical Economic Review (ICER). 

The Executive budget and Assembly budget further entrench the profoundly damaging dynamic whereby New York Medicaid will restrict access for people with disabilities and chronic illness as a negotiating strategy for determining what the program will cover and pay for, putting patients and people with disabilities in the middle of the debate on health care costs. 
​
Therefore, we need your help to convey to New York legislators that the Senate budget language is preferred, and that the Executive budget and Assembly budget language is detrimental to our communities. 

​Below is a draft that we encourage you to personalize:
​I am writing to express support for language in the Senate budget reflecting the concerns expressed in a letter signed by 45 organizations and individuals that oppose the use of third party value assessments, especially those relying on quality-adjusted-life-years (QALYs) and similar metrics, as the basis for denying or restricting access to care in the State of New York. 

The New York Senate budget bill reflects that our voices were heard.  As drafted, it does not allow the state to rely on assessments that "utilize a measure that discounts the value of a life because of an individual’s disability or age…”.  Additionally, it seeks to eliminate use of biased assessments  and requires that assessment relied upon must be public, transparent and reflect differential outcomes for subpopulations. 

Unfortunately, the New York Assembly included a provision in their budget proposal similar to the provision we opposed in our letter. The Assembly bill does not preclude the use of a discriminatory metric for determining the value of treatments and would allow for the use of a QALY.
​
Please know we prefer the Senate language and appreciate the Senate’s attention to our concerns.  We oppose the Executive budget and Assembly budget language that would further entrench the profoundly damaging dynamic whereby New York Medicaid would restrict access for people with disabilities and chronic illness as a negotiating strategy for determining what the program will cover and pay for. 
Key Contacts:

  • Carl Heastie, Speaker of the Assembly, (518) 455-3791, Speaker@nyassembly.gov
  • Andrea Stewart-Cousins, Senate Majority Leader, (518) 455-2585, scousins@nysenate.gov
  • Crystal Peoples-Stokes, Assembly Majority Leader, (518) 455-5005, PeopleC@nyassembly.gov
  • John Flanagan, Senate Minority Leader, (518) 455-2071, flanagan@nysenate.gov
  • Michael Gianaris, Senate Deputy Majority Leader, (518) 455-3486, gianaris@nysenate.gov
  • Gustavo Rivera, Chair Senate Health Committee Chairman, (518) 455-3395, grivera@nysenate.gov
  • Richard N. Gottfried, Chair Assembly Health Committee, 518-455-4941, GottfriedR@nyassembly.gov
  • Monica Miller, NY Assembly Health staff, millerm@nyassembly.gov

Comments are closed.

    Topics

    All
    Advocacy
    Alternative Payment Models
    Letters And Comments
    Patient Centered Research
    Patient-Centered Research
    PCORI Meeting Transcripts
    Polling
    Roundtables
    Value Frameworks
    White Papers

    Archives

    January 2023
    December 2022
    November 2022
    October 2022
    September 2022
    August 2022
    July 2022
    May 2022
    April 2022
    March 2022
    February 2022
    December 2021
    November 2021
    October 2021
    September 2021
    August 2021
    June 2021
    May 2021
    April 2021
    February 2021
    January 2021
    December 2020
    November 2020
    October 2020
    September 2020
    July 2020
    June 2020
    May 2020
    March 2020
    February 2020
    January 2020
    December 2019
    November 2019
    October 2019
    August 2019
    June 2019
    May 2019
    April 2019
    March 2019
    February 2019
    January 2019
    November 2018
    October 2018
    September 2018
    August 2018
    July 2018
    June 2018
    May 2018
    March 2018
    November 2017
    October 2017
    September 2017
    July 2017
    June 2017
    May 2017
    April 2017
    December 2016
    November 2016
    October 2016
    September 2016
    August 2016
    June 2016
    May 2016
    April 2016
    March 2016
    January 2016
    December 2015
    November 2015
    September 2015
    July 2015
    June 2015
    May 2015
    April 2015
    February 2015
    December 2014
    November 2014
    October 2014
    September 2014
    August 2014
    July 2014
    June 2014
    May 2014
    April 2014
    February 2014
    January 2014
    November 2013
    October 2013
    September 2013
    July 2013
    May 2013
    December 2012
    November 2012
    October 2012
    September 2012
    May 2012
    March 2012
    January 2012
    December 2011
    September 2011
    July 2011
    May 2011
    April 2011
    March 2011
    November 2010
    August 2010
    July 2009
    June 2009

About PIPC
The Issues
Resources
Blog
In the News
Press Releases
Contact Us
100 M Street, SE – Ste. 750
Washington, DC 20003