Health/Rights: NCD Releases Report on Quality-Adjusted Life Years

On November 6, the National Council on Disability (NCD) released a report titled “Quality-Adjusted Life Years and the Devaluation of Life with Disability.” The report details the use of quality-adjusted life years (QALYs) in the evaluation of treatment coverage. QALYs are based on the premise that the value of one year of the life of a person with a disability is less than the value of one year of the life of a person without a disability. The report recommends, among other things, prohibiting the use of QALYs in Medicare and Medicaid.

Health/Rights: National Council on Disability Releases Report on Genetic Testing

The National Council on Disability (NCD) recently released “Genetic Testing and the Rush to Perfection,” the third report in a series on Bioethics and Disability. This report examines the range of scientific, commercial, professional, and social factors that converge around prenatal genetic testing and their effect on the lives of people with disabilities; and it provides an update on the interaction between genetic testing and employment discrimination.

Health Care: Health Insurance Open Enrollment Continues Through December 15

Now is the time for individuals who are uninsured or are looking for affordable health insurance to investigate the private health insurance plans available through state marketplaces (to find your state information visit During open enrollment, a person can purchase private health insurance through the marketplace in each state. There may also be financial assistance to help with health care costs available to people with low and moderate incomes. It is also important for people who currently have insurance through the marketplace to look at the plan to determine if it will continue to meet their needs. Individuals who do not take action will be automatically re-enrolled in the current plan. Re-enrollment is also an important opportunity for people to report any changes in income.

Health: House Committees Approve Lower Drug Costs Now Act

The House Committees on Energy and Commerce, Ways and Means, and Education and Labor have approved the Lower Drug Costs Now Act of 2019 (H.R.3). This bill requires the Centers for Medicare and Medicaid Services to negotiate prices on insulin and at least 25 drugs each year. These negotiated prices would apply to all Medicare Advantage and Medicare Part D plans. Additionally, it creates an out-of-pocket limit of $2,000 for Medicare Part D plans. The Arc is pleased that provisions were added to ensure that the value of drugs is not measured based on quality-adjusted life years (QALYs), which are based on the premise that the value of one year of the life of a person with a disability is less than the value of one year of the life of a person without a disability. The amended bill makes several improvements for Medicare low-income subsidy recipients that The Arc supports, such as eliminating co-payments for generic medications.

Health/Rights: Health Care Anti-Discrimination Rule Comments Due August 13

In June, the Office for Civil Rights (OCR)¬†of the Department of Health and Human Services (HHS) issued a new proposed rule that weakens the current interpretation of Section 1557 of the Affordable Care Act (ACA). Section 1557 prohibits health programs or activities that get federal funds from discriminating based on race, color, national origin, age, disability, or sex. The proposed rule would diminish the ACA’s anti-discrimination protections for people with disabilities. To learn more about how the proposed rule impacts people with disabilities, read The Arc’s blog post and this fact sheet from the Consortium for Citizens with Disabilities (CCD) on the topic. CCD has also provided a comment template with instructions for submitting comments. Comments are due on August 13.

Health/Rights: HHS Proposes Weakening Health Care Anti-Discrimination Rule

On May 24, the Department of Health and Human Services (HHS) released an advance copy of a proposed rule to weaken its regulations implementing Section 1557 of the Affordable Care Act (ACA). Section 1557 prohibits discrimination on the basis of race, color, national origin, sex, age, or disability in health programs and activities receiving federal financial assistance. The proposed rule would narrow protections for all people experiencing discrimination under the law, eliminate protections for LGBTQ people, and roll back protections for people with limited English proficiency, among other impacts. The Arc is reviewing the proposed rule and will provide further analysis.

Health: House Passes Bill to Improve the ACA

On May 16, the House of Representatives passed H.R.987, which reverses administrative actions weakening the Affordable Care Act (ACA). It rescinds the Department of Health and Human Services regulation expanding the use of short-term limited-duration insurance (STLDI). STLDI plans are not required to cover people pre-existing conditions, and can charge higher premiums based on age, gender, or health status. Additionally, it restores funding for consumer outreach and education programs and the Navigator Program, which were cut by the Administration.

Health/LTSS: Representatives Introduce Medicare for America Act

On May 1, Representatives Rosa DeLauro (D-CT) and Jan Schakowsky (D-IL) and 14 other co-sponsors introduced the Medicare for America Act (H.R.2452). The bill expands Medicare to cover all persons not covered by employer-sponsored health insurance. Additionally, it expands Medicare’s benefit package to include long term services and supports (LTSS), among other things. The Arc supports including provisions to cover LTSS in any comprehensive health reform proposal.

Health: Bill Declaring People With Developmental Disabilities (DD) a Medically Underserved Population Introduced in the House

On May 1, Representatives Seth Moulton (D-MA) and Brian Fitzpatrick (R-PA) introduced the Healthcare Extension and Accessibility for Developmentally Disabled and Underserved Population (HEADs UP) Act of 2019 (H.R. 2417). This bill would declare people with DD a medically underserved population (MUP). People with DD face a shortage of primary care providers, as well as higher infant mortality rates, higher poverty rates, and shorter life expectancy than the general population. The MUP designation comes with increased access to resources from 25 different government programs, including Federally Qualified Health Centers, Community Health Centers, loan repayment and training programs under Health Resources and Services Administration Workforce Development and Training Programs, and preference in research within agencies such as the National Institutes of Health. The Arc supports this bill.

Health/LTSS: Medicare for All Plan With LTSS Coverage Introduced in the Senate

On April 10, Senator Bernie Sanders (I-VT) and 14 other Senators introduced the Medicare for All Act of 2019 (S.1129) which expands Medicare to cover all residents. It also eliminates all out-of-pocket costs for all benefits except prescription drugs and expands benefits to include home and community-based long term services and supports (LTSS), among other things. The Arc supports including provisions to address the need for LTSS in any comprehensive health reform proposal.

Correction: The original title of this article inaccurately stated that this bill was introduced in the House. The Arc regrets this error.