Addressing Current Gaps in the Provision of Prenatal Testing to Improve Patient Support and Present Disabilities More Equitably

Between June 6-June 8, 2021, the Prenatal Subcommittee of the Center for Dignity in Healthcare for People with Disabilities presented a poster about “Addressing Current Gaps in the Provision of Prenatal Testing to Improve Patient Support and Present Disabilities More Equitably” during the virtual gathering of the 25th International Conference on Prenatal Diagnosis and Therapy.
The poster was prepared by prenatal subcommittee members, Stephanie Meredith, Scotti Brackett, Nikki Watson, and Dr. Marsha Michie. Check out the poster below to learn more about the prenatal themes from the Gap Analysis:

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It is Time to Let Go of the QALY’s Legacy of Discrimination

By:
Kelly Israel, Policy Analyst, Autistic Self Advocacy Network
Sara van Geertruyden, Executive Director, Partnership to Improve Patient Care

People with disabilities are consistently told they are too expensive to treat when compared to other groups. A metric of determining cost effectiveness of treatments and health services called the quality-adjusted life year (QALY) is yet another tool to make that argument on a larger scale. The QALY is often used to compare the benefits and costs of healthcare interventions. Cost effectiveness analyses based on the QALY are largely developed with intent for their use by insurers and payers to inform the treatments and services that may or may not be covered or subjected to utilization management practices. Advocates have long pushed for consideration of better metrics by payers that reflect the priorities of patients and people with disabilities, hoping to reduce hurdles to appropriate and timely care. As advocates work to understand how the concept of value is defined and used by states and health systems, it is imperative to understand why the QALY metric is discriminatory.  

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Does it matter that the COVID-19 Vaccine is for Emergency Use Authorization Only and not Full-FDA Approval?

By Tracy Waller

The History of Vaccines

Vaccinations are recommended for children from birth. The Advisory Committee on Immunization Practices (ACIP)develops recommendations on the use of vaccines, and the Centers for Disease Control and Prevention (CDC) sets U.S. adult and childhood vaccinations schedules based on those recommendations.[1] Before leaving the hospital or birthing center, a baby receives the first of three doses of the vaccine that protects against Hepatitis B. Starting at one to two months of age, babies receive six different vaccines: Hepatatis B (second dose), Diptheria, tetanus, and whooping cough (pertussis) (DTaP), Haemophilus influezae type b (Hib), Polio (IPV), Pneumococcal (PCV), and Rotavirus (RV). 

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Vaccine Allocation Confusion

Are Vaccines Even Accessible?

Tracy Waller, Esq., MPH, is an attorney with the Maryland Center for Developmental Disabilities (MCDD) at Kennedy Krieger Institute as part of the MCDD’s grant to develop a Center for Dignity in Healthcare for people with Disabilities (CDHPD).

Vaccine Prioritization Decisions

If you are confused about the vaccine allocation priority groups in your county or state, you are not alone. The Centers for Disease Control and Prevention (CDC) is providing recommendations to federal, state, and local governments about who should be vaccinated first. The CDC’s recommendations are based on those from the Advisory Committee on Immunization Practices (ACIP), an independent panel of medical and public health experts. The ACIP’s vaccine allocation recommendations aim to: (1) decrease death and serious disease as much as possible, (2) preserve functioning of society, and (3) reduce the extra burden COVID-19 is having on people already facing disparities. 

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Steps to Develop a Disability Advocacy Response to Vaccine Roll-Out Plans

family photo of Stephanie Meredith and her husband and 3 children
Stephanie Meredith is the author and co-author of multiple resources for new and expectant parents who receive a diagnosis of Down syndrome or other genetic disabilities. Ms. Meredith leads the Center for Dignity’s Prenatal Diagnosis Subcommittee. Ms. Meredith shares her advocacy letter to Georgia state leadership as an example for other advocates who would like to ensure people with intellectual and developmental disabilities have equitable access to vaccines.
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