[Editor's Note: Over the last year, DPC has been working hard to protect the right of people with disabilities to access prescription drugs. We believe that prices need to come down, and we are proud to support bills like H.1133 / S.706, as well as federal legislation like the Medicare Negotiation and Competitive Licensing Act, that promote accountability and lower prices without harming patients or discriminating against people with disabilities.

However, some want to take a different approach, one that sacrifices people with disabilities in the belief that it will lower costs. In particular, we are deeply concerned about a particular metric, the Quality Adjusted Life Year (QALY), which some have proposed using to set the prices of prescription drugs and other healthcare treatments. This measure is quite literally based on the idea that the lives of people with disabilities are less valuable, and less worth saving, than the lives of people without disabilities. It ranks the life of an individual with a disability as worth a percentage of the life of a person without a disability, and the more "severe" an individual's disability is judged to be, the less it argues the state should be willing to pay to keep them alive. Needless to say, this is a terrifying prospect for our community.

This Monday at 11AM, the Committee on Financial Services is considering a bill, H. 1088, that would ban the use of this discriminatory metric for all healthcare decision-making in Massachusetts. We support this legislation, and we're collecting signatures on the testimony you see below. If your organization would like to sign on this week, please email me at [email protected]. We'd also ask you to reach out to your legislators, particularly if they are on either the Financial Services Committee or the Healthcare Financing Committee, and tell them you will not stand for this kind of discrimination.  Below is the testimony of Colin Killick, Executive Director, DPC. and the leaders of BCIL, MWCIL and NAMI Massachusetts]

Sen. James T. Welch
Chair, Joint Committee on Financial Services

Rep. James M. Murphy
Chair, Joint Committee on Financial Services

Members of the Joint Committee on Financial Services
24 Beacon St.
Room 413-B
Boston, MA 02133

As organizations supporting the rights and well-being of people with disabilities and chronic illnesses, we are writing to express our strong support for H.1088--An Act Relative to Prescription Drug Access. This bill is critical, as it is imperative that policymakers do not use Quality Adjusted Life Years (QALYs) to determine the value of prescription drugs in healthcare decision-making of any kind. While some describe QALYs as an objective measure that captures the total value of individuals' lives, they are in fact based on a fundamentally discriminatory and eugenic assumption: that the lives of people with disabilities are inherently less worthwhile and less worth saving than the lives of people without disabilities. Massachusetts must unequivocally reject this idea.

QALYs measure the value of the lives of people with disabilities as a percentage of the value of the lives of people without disabilities, thus utterly misrepresenting the lived experiences of people with disabilities. They literally assign a numerical value to the lives of individuals with specified disabilities--the more severe someone's disability is judged to be, the less their life is worth, and the less valuable a treatment that would extend their life is judged to be. These values are typically set not by asking people who have the disability, but by calling random individuals who do not have the disability in question and asking them to imagine, based only on a brief description of generalized symptoms, how much worse it would be than their current lives. In other words, QALYs are based on stigma, not science.

This misrepresentation has potentially harmful consequences for both disease mitigation and life-extension. While recent proposals to modify QALYs to address concerns regarding the value of extending the lives of persons with disabilities are a positive development, QALYs still depend on a discriminatory and arbitrary approach to the measurement of quality of life, often relying upon broad population surveys that query how people perceive the impact of disability or chronic illness. This public perception does not reflect the value that people with disabilities or chronic illnesses place on their own lives and their ability to obtain healthcare, including needed medications.

Disability rights advocates have long opposed the use of QALYs as discriminatory, as has the federal government. The Affordable Care Act prohibited the use of QALYs in Medicare and within the ACA's Patient Centered Outcomes Research Institute (PCORI). In the 1990s, HHS rejected a proposal from the State of Oregon to use QALYs in their Medicaid program because it would have violated the ADA. Under a QALY-based model, individuals with cystic fibrosis, rheumatoid arthritis, spinal muscular atrophy and a wide variety of other conditions that require ongoing medication to manage symptoms would be put at a distinct disadvantage. Drugs which keep us alive, or significantly improve our quality of life, could be unavailable if QALY analysis leads policymakers to conclude that our lives and well-being are not worth the money. And far beyond prescription drugs, the use of QALYs threatens every program that benefits people with disabilities, from personal care attendants to durable medical equipment, since their fundamental presumption is that the more disabled the recipient of a service is, the less that service is worth.

Our community supports efforts to lower drug prices-we are a population that often has to pay high costs of prescription drugs out of pocket. We support greater transparency and accountability for drug companies, and many of our organizations support various legislative proposals that would give policymakers tools to bring prices down. We are also strongly in favor of the use of data to make healthcare decisions-provided it is real data that genuinely incorporates the perspectives of people with disabilities. However, we oppose any introduction of QALYs to the Massachusetts health-care system, and any partnership with entities that rely on them. We therefore ask the committee to support this bill, and all state policymakers to affirmatively reject the use of QALYs for any purpose related to healthcare analysis or decision-making.

Sincerely,

Colin Killick, Executive Director
Disability Policy Consortium

Bill Henning, Executive Director
Boston Center for Independent Living

Paul Spooner, Executive Director
Metrowest Center for Independent Licing

Deborah Shields, Executive Director
NAMI Massachusetts

When:  Thursdays, October 3, 2019 - December 19, 2019, 7:30 P.M.- 9:30 P.M.

Office Hours Sundays from 1:00 P.M. - 3:00 P.M.

Where:  Online through Zoom

Our Space Our Place, Inc. and Vision Aid is offering a Coding Class

For blind or low vision adults age 21 years and older

This is an introduction to HTML and CSS.

Location: Online- using Zoom

Time: 7:30 pm - 9:30 pm (Eastern Time)

Cost: $260.00

Beginning Thursday October 3, this class meets every week until December 19. Office hours will be on Sunday from 1:00 pm- 3:00 pm (Eastern Time): an opportunity to work more directly with the Instructor.

To participate you must be a proficient user of Windows and the adaptive software you use to access your computer

After 9 weeks in class you will:

• Develop a web page
• Know how to upload and to make changes to your web page
• Have a basic knowledge of HTML and CSS
• Gain marketable skills for employment

Register here:

http://www.ourspaceourplace.org/

register_coding.php

Any questions?  Go to:

[email protected]