Under the EDVI Act, the Health Resources and Services Administration (HRSA) at the U.S. Department of Health and Human Services, will award grants and cooperative agreements for states and communities to implement approaches to establish a coordinated public health system for vision health, including public education, early detection, eye care coordination, diagnosis, treatment, and supporting services.

Prevent Blindness met with Members of Congress to advocate support of the EDVI Act. 

In addition, resources will also be made available through the Centers for Disease Control and Prevention (CDC) to provide technical assistance and guidance to all states and communities to implement best practices in vision systems, provide national surveillance, and conduct critically needed research. 

Join us next Wednesday, May 14, for the 2025 Focus on Eye Health Summit, a groundbreaking gathering of leaders in public health, eye care, and government sectors. This year’s theme, Perspectives in Vision, emphasizes the need for a collaborative, multidisciplinary approach to addressing eye health challenges in an evolving world.

Follow the link to learn more and view the agenda.

Registration is free of charge.

On April 1, U.S. Secretary for Health and Human Services Robert Kennedy put into action a major restructuring of the U.S. Department of Health and Human Services (HHS) that included significant cuts in personnel, closure of several divisions within HHS, and consolidation of other departments across the agency.

This move was made without any public stakeholder feedback and without Congressional input or oversight of the federal appropriations process to comply instead with an Executive Order pertaining to Department of Government Efficiency (DOGE) priorities for reducing federal spending.

Below are some of many changes at HHS:

• Personnel reductions from 82,000 to 62,000 full-time staff, including 2,400 full-time staff at the Centers for Disease Control and Prevention (CDC), around 600 full-time staff at the Health Resources and Services Administration (HRSA) and 1,200 full-time staff at the National Institutes of Health.

• 28 divisions consolidated into 15 divisions, including consolidating such agencies as HRSA into a new Administration for a Healthy America (AHA) to include divisions in primary care and maternal and child health.

• Splitting the Administration for Community Living (ACL), which manages programs that support older Americans and people with disabilities, across the Administration for Children and Families (ACF), the Assistant Secretary for Planning and Evaluation, and the Centers for Medicare and Medicaid Services. It is unclear whose responsibility what programs will be under. 

The Trump Administration has released its Fiscal Year 2026 budget request to Congress for programs under the U.S. Department of Health and Human Services (HHS), which proposes to eliminate the National Center for Chronic Disease Prevention and Health Promotion at the Centers for Disease Control and Prevention (CDC)— which includes the Vision Health Initiative (VHI). As always, regardless of who is in the White House, Presidential Budget Requests are not law, and Congress retains constitutional authority to determine spending decisions. 

Last week, Prevent Blindness joined over 500 organizations in a letter calling on Congress to reject these cuts and work together to invest in our national public health. Read the letter here. We will continue to meet with legislators to request $10 million to fund vision and eye health surveillance and community-based glaucoma programs and inform Members of Congress of the benefits these programs have on their constituents.

Take action! Please visit the Prevent Blindness Legislative Action Center to send a message to Members of Congress in support of the Vision Health Initiative and its important mission to prevent blindness and preserve sight.

Congress is considering a budget proposal that would drastically cut the Medicaid program and potentially leave millions of Americans— from young children to aging Americans— without access to sight-saving vision and eye health care.

Two advocates with the Prevent Blindness ASPECT Program share what Medicaid cuts mean to them. We urge you listen to their stories, and then send a message to Congress asking them to protect Medicaid access to vision and eye health.

Listen to Tracy's Story

Listen to Liz's Story

Through letters recently submitted to Congressional leadership in both the House and the Senate, and copied to Secretary of State Marco Rubio and Dorothy Camille Shea, US Ambassador to the United Nations, Prevent Blindness and the International Agency for the Prevention of Blindness are calling on Congress to continue to offer U.S. support for global eye health programs that have demonstrated significant impact over the past four decades.

U.S. investments have helped eliminate infectious causes of blindness like trachoma and river blindness in multiple countries, expanded access to assistive technologies such as eyeglasses through the AT-Scale initiative, and improved outcomes for millions of children through the Childhood Blindness Program. These efforts not only enhance global health and education but also support American public health diplomacy, innovation, and economic development.

ORPHAN Cures Act: Protecting Patients & Rare Disease Innovation

Content Sponsored by Amgen

For the more than 30 million Americans living with one of over 7,000 rare diseases—including an estimated 550 rare eye diseases—the path to diagnosis and treatment is often long and uncertain. Amid these challenges, policies that promote research and development, like those in the Orphan Drug Act (ODA), have been essential in advancing care for patients who may face vision loss, visual impairment, or blindness due to a rare eye condition. Since the ODA’s passage in 1983, which created incentives for research and development (R&D) related to orphan diseases (a term for rare diseases that affect fewer than 200,000 people), the number of approved treatments for rare diseases has grown from just 38 to over 750. Still, more than 90% of rare diseases have no FDA-approved treatment, underscoring the need for research and development of medicines specifically designed to treat rare conditions.

With so far still to go, the progress towards innovative treatments for rare diseases is now at risk. The Inflation Reduction Act (IRA) exempts orphan drugs that are designated and indicated for use in treating a single rare disease from Medicare price setting. If a therapy is later designated for an additional rare condition, it loses this exemption from price setting, potentially discouraging additional research to learn how that treatment could benefit other underserved patient populations. This is concerning given that nearly one in four orphan drugs approved by the FDA between 2003 and 2022 eventually received a subsequent approval for use in treating other conditions, often for other rare diseases.

The bipartisan ORPHAN Cures Act (H.R. 946) offers a solution by ensuring that orphan drugs remain exempt from price setting under the Medicare program even when designated and indicated for use in treating multiple rare diseases. This change would protect the incentives needed to advance research and innovation for rare disease patients. We remain committed to supporting policies like the ORPHAN Cures Act that foster continued progress for patients with serious and often overlooked conditions. 

A message from Prevent Blindness: 

• We invite our advocates to send a message to Congress in support of the ORPHAN Cures Act through the Prevent Blindness Legislative Action Center. 
• Learn more about the ORPHAN Cures Act at an upcoming webinar hosted by the National Center for Children’s Vision and Eye Health – “Use Your Voice: Advocacy Strategies for Children’s Vision” on June 4 at 2pm EST. Register here.
• To learn more about the ORPHAN Cures Act and how it protects incentives for rare disease research, visit BIO.org.

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