Senator Bob Casey
Robert Patrick "Bob" Casey Jr. is an attorney, politician and member of the Democratic Party who serves as the senior United States Senator from Pennsylvania, since 2007.

Senator Casey serves on five Senate committees: Finance; Health, Education, Labor and Pensions; Agriculture, Nutrition, and Forestry; the Special Committee on Aging; and the Joint Economic Committee. Born and raised in Scranton, Pennsylvania, Bob Casey graduated from The College of the Holy Cross in 1982 and spent the following year teaching fifth grade and coaching eighth grade basketball in inner city Philadelphia for the Jesuit Volunteer Corps. He received his law degree from Catholic University in 1988 and entered the practice of law in Scranton.

Time to Empower Patients and People with Disabilities

Health care in the United States is in the midst of a transformation. Medical innovation is accelerating at an exponential rate, and policymakers are taking a new, modern approach to health care policy.

When I was elected to the U.S. Senate in 2007, more than 15% of our nation lacked health insurance and insurance companies were permitted to discriminate against individuals with pre-existing conditions. In addition, our health care system was stuck paying providers for the volume of care they delivered, rather than the quality or outcome of that care. Thankfully, we’ve come a long way from then.

I supported the Affordable Care Act (ACA) when it passed in 2010. Among other things, one of the important aspects of the ACA is that it ensures that everyone, including people with disabilities, are treated fairly when purchasing health insurance coverage and that no one can be discriminated against because of pre-existing conditions. Equally important, the ACA laid the foundation for reforms that reward the quality and positive outcomes of health care.

To succeed, these health care reforms should be founded on one principal: improving the life of patients receiving care. As technology opens the door to groundbreaking methods of personalized care, having people with disabilities involved in the health care debate is more important than ever before. The power to personalize care will incentivize people to monitor and take a more active role in maintaining their health.

In principle, the idea of a patient-centered health system that engages individuals in their own care and rewards quality has extraordinary promise for persons with disabilities. But its application in the real world isn’t without risks. That is because some insurers and policymakers who want to realize savings and efficiencies may turn to a measure of “value” known as quality-adjusted-life years (QALYs). The application of QALYs, which seeks to standardize the patient experience and derive value and clinical assessments based on “average” impacts of a condition could reduce healthcare access for individuals.

Persons with disabilities may have atypical health care needs and, as a result, require individualized services or treatments. The wide variation of physiological experiences of long-term disability, such as cerebral palsy, epilepsy, or Down syndrome, means that what is an “average” treatment may not be appropriate for any given individual with a disability.  There is long standing and well-founded concern regarding the use of QALYs, which use an average view of the optimal quality of life to determine the value of a treatment. Using QALYs to determine the treatment for people with disabilities could reduce health care access because the cost-per-QALY may not be deemed cost-effective. As a result, using QALYs and similar tests to determine who gets what treatment could have a severe impact on the access to health care for countless individuals with disabilities.

This is a concern that should hit close to home for nearly every American. Just consider that nearly one in five Americans lives with a disability. While some of those disabilities are highly visible, others are much harder to notice. As Hillary Clinton aptly noted in a speech last week, “If you don’t know you know someone with a disability, I promise you, you do.”

Unfortunately, people with disabilities haven’t always had their voices heard in the health care debate. We too often fail to deliver the services and supports that people with disabilities need to live well in communities, to work, and to participate in society. Too often, it’s not considered cost effective to deliver health care to people with disabilities in a manner that supports community living and employment. 

As Americans, the way we treat people with disabilities speaks volumes about who we are as a society. By elevating their voices in the health care conversation, we can do our part in supporting the principals of personalized medicine and patient-centered care. We need their participation in developing solutions. Elevating their voices also acknowledges their value. To move beyond words to action, we need to listen to those who too often are not heard in health care or society – patients, caregivers, and people with disabilities. While a “one size-fits-all” approach may be cheaper for health insurers, I know we can do better. Health care reforms, and technological innovation, have brought us to the point where we can achieve truly patient-centered care. We just need the will to achieve it. 

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