Your Voice, Your Value is a grassroots advocacy organization created to protect the disability community and those fighting chronic diseases from the discriminatory practice of value assessments. We’re a coalition of health advocates, community groups, caregivers and patients with disabilities, chronic conditions who agree that patients have value beyond costs. Our mission is to stand up against the dangerous practice of value assessments, and envision a future where people are not defined by the prices of their treatments.
Learn about Your Voice, Your Value and the work we are doing to make sure the voices of the disability community and those with chronic diseases are heard.
Value assessments in healthcare are a discriminatory practice that put a numerical value on improvements in a patient’s quality of life from treatments. These values, also called Quality Adjusted Life Years (QALYs), were developed to measure and compare the benefits of healthcare treatments for cost effectiveness. QALYs place greater value on years lived in full health and place less value on gains in health with those with chronic diseases or disabilities. Value assessments undervalue treatments for patients who may see great improvements in the quality of their life but never return to “perfect health.” This practice discriminates by favoring younger and healthier populations that have more potential years to improve their overall health. It also stifles innovation, especially around rare disease therapies, which affect smaller numbers of people but have a great impact on the quality of life for the patients who need them.
Help Us Fight Against Value Assessments
Take a stand for people with disabilities in rejecting policies that discriminate against us. Californians need to stand together in valuing the unique voices of people with disabilities instead of defining our value based on costs or convenience. Join Familia Unida and the Your Voice, Your Value coalition in our fight to preserve our voices and dignity. We all have value that can’t be defined by a price. Let’s show that our voices matter.
Value Assessments Don’t Include Patient Perspectives
Value assessments ignore what makes us individuals with voices and value. These cost rankings by for-profit groups don’t include how patients feel about the health decisions they make for themselves. We need to focus on patient-centric policies, such as the value of care in improving family circumstances and quality of life. By using value assessments, organizations are silencing the voice of vulnerable populations who need vital care.
Value Assessments are Not TransparentWe don’t know how cost ratios for value assessments are developed or what factors are taken into consideration. These value assessments are created by for-profit groups without input from patients or their doctors. The lack of transparency in value assessment-based drug reviews is particularly troubling when human lives are at stake.
Why is Your Voice, Your Value Against Value Assessments?Value assessments deny people with disabilities and chronic conditions the ability to work with doctors to make decisions about our own treatments. The Affordable Care Act banned the use of value assessments in Medicare at the national level, but it is beginning to be used by state governments and insurance companies to reduce access to treatment in vulnerable populations. We must reject this discriminatory value assessment system that both puts the quality of our lives in jeopardy and stifles vital innovations into new therapies that we deserve to live healthy lives.
Frequently Asked Questions