As discussed in our May newsletter, the One Big Beautiful Act passed the U.S. House (to view our explainer, click HERE<\/a>) and is currently under discussion in the Senate. Republican lawmakers are currently debating the provisions in the final version that will be voted for on the Senate floor. While some portions of the bill are confirmed, others are still being debated by Republican Senators. The Senate Finance Committee\u2019s portion of the bill, which contains its Medicaid provisions and was released last week, goes further than the House\u2019s version in cutting funding for Medicaid.<\/p>\n The most concerning Medicaid provision in the Senate version is the limit placed on state Medicaid provider taxes. In every state except Alaska, Medicaid programs are partly funded through special taxes on healthcare providers like hospitals, nursing homes, or insurance plans. States collect this money and then return it to providers who disproportionately care for Medicaid patients, like rural or nonprofit hospitals, helping to cover the cost of operations and services. This system gives states a way to raise money to support Medicaid\u2014whether to maintain current services, expand benefits, or respond to new healthcare needs. The federal government also helps by matching some of the funds raised through these taxes.<\/p>\n States currently have the ability to implement provider taxes that go up to 6% of revenue created by providers. The Senate version of the One Big Beautiful Bill Act would reduce the provider limit for states that have expanded Medicaid under the Affordable Care Act (40 states) to 3.5%<\/a>, significantly reducing the ability for states to finance benefits, coverage, and financial assistance for rural and disproportionate share hospitals (DSH). The provision, as it stands, would require 22 states to reduce their provider taxes on hospitals and Managed Care Organizations (MCOs – healthcare insurance plans).<\/p>\n Capping the ability for states to raise funds would significantly decrease Medicaid revenue and force states to reduce hospital payment rates or patient eligibility and coverage. While lawmakers have continued to deny that these provisions would lead to significant impacts to Medicaid, the facts are clear \u2014 caps on Medicaid provider taxes would cut funding for Medicaid, leading to rural hospital closures and reductions in healthcare benefits for vulnerable patients who rely on the program, including one-third of hydrocephalus patients.<\/p>\n On June 12th, Congressman Andre Carson (IN-07) and Congressman Mike Levin (CA-49) introduced the Medical Research for Our Troops Act (H.R. 3906), which would restore FY2025 funding levels to FY2024 for the Department of Defense\u2019s Congressionally Directed Medical Research Program (CDMRP).<\/p>\n In March, Congress passed a Continuing Resolution (CR) that implemented a 57% cut ($859 million) to the CDMRP\u2014a key source of funding for hydrocephalus research. The CDMRP, funded at $1.561 billion in FY2024, supports high-impact, peer-reviewed research across a range of conditions relevant to military and public health. In recent years, hydrocephalus research has seen important gains through this program, including the first clinical trial in babies for a drug combination that could support the brain\u2019s natural repair process after a brain bleed. In the 2022 grant cycle, hydrocephalus was awarded a historical high of $15 million in research funding. Hydrocephalus research was awarded $11.78 million in 2023 and $1.57 million in 2024.<\/p>\n The Peer Reviewed Medical Research Program (PRMRP) – the program in which hydrocephalus is eligible – was cut from $370 million to $150 million (almost 50% less than FY24 levels). Over 20 other research areas, including lung cancer and traumatic brain injury, were eliminated from the 2025 funding cycle altogether. These cuts jeopardize promising research on shunt technology and treatment strategies\u2014many of which directly improve the lives of individuals living with hydrocephalus.<\/p>\n Restoring 2025 funding for the CDMRP would ensure that critical biomedical research aimed at improving the lives of our service members, veterans, and their families is not left on the table. To view HA\u2019s statement on the legislation, click HERE.<\/a><\/p>\n Congressman Mike Thompson (CA-04), Congressman David Schweikert (AZ-01), Congresswoman Doris Matsui (CA-07), and Congressman Troy Balderson (OH-12) introduced the Creating Opportunities Now for Necessary and Effective Care Technologies (CONNECT) for Health Act, which would permanently establish telehealth access in Medicare.<\/p>\n The legislation in particular would permanently remove all geographic restrictions on telehealth services and expand originating sites to the location of the patient, including homes, permanently allow health centers and rural health clinics to provide telehealth services, allow more eligible health care professionals to utilize telehealth services, remove unnecessary in-person visit requirement for telemental health services, allow for the waiver of telehealth restrictions during public health emergencies, and require more data to be published on the impact of telehealth on quality of care and how it can be improved to support patients and health care providers.<\/p>\n Permanently expanding telehealth opportunities would offer significant benefits to the hydrocephalus community. Virtual care expands care access for hydrocephalus patients located in rural or underserved areas. By removing geographic restrictions on health services, more patients would be able to receive care from their home and\/or qualified sites from medical professionals experienced in hydrocephalus diagnosis, treatment, and care.<\/p>\n In April, Senator Brian Schatz (HI), Senator Roger Wicker (MS), and 60 other U.S. Senators introduced<\/a> the Senate counterpart of the CONNECT for Health Act.<\/p>\n The Hydrocephalus Association is partnering with other patient advocacy organizations to fight against threats to Medicaid funding. HA signed onto a letter by the Modern Medicaid Alliance urging the U.S. Senate to reject current provisions in the Senate reconciliation bill that would negatively impact Medicaid benefits and coverage for patients with chronic and life-threatening conditions.<\/p>\n To view the letter, click HERE.<\/a><\/p>\n Hydrocephalus Association Applauds Introduction of the Medical Research for Our Troops Act<\/b><\/a><\/p>\n Medicaid Impact of U.S. House Reconciliation Package on People with Hydrocephalus<\/b><\/a><\/p>\n Testimony from the Hydrocephalus Association – U.S. Senate Committee on Appropriations Hearing<\/b><\/a><\/p>\n Assessing Recent HHS Reductions in Force (RIF) Layoffs and Their Impact on the Hydrocephalus Community<\/b><\/a><\/p>\n Tell U.S. Senators to Oppose the Reconciliation Package and Prevent Cuts to Medicaid! – Email Action Alert\u00a0<\/b><\/a><\/p>\n Cosponsor the Medical Research for Our Troops Act (H.R. 3906) –\u00a0 Email Action Alert<\/b><\/a><\/p>\n Want to deep dive into these issues? Don’t forget to join us for our next Advocacy Update on July 2 at 7:00 pm Eastern. If you haven\u2019t signed up yet, click here to register.<\/a>\u00a0<\/b><\/p>\n Registration is now open for the Rally for Medical Research in-person Capitol Hill Advocacy Day in Washington, DC. Join patients, caregivers, providers, and researchers in advocating for the National Institutes of Health (NIH) to members of Congress. The Hydrocephalus Association cannot offer financial assistance to advocates, but we\u2019d love to have you attend if you’re able. Please contact Davis@hydroassoc.org<\/a> if you are interested in attending or have any questions. Click here to register.<\/a><\/p>\n Join Dr. Ryann Fame as she shares some of her research as a developmental biologist. Her work explains how genes expressed early while the brain is forming can play a part in the development of congenital hydrocephalus. This research also helps explain how the early brain develops from neural stem cells, including how the very first cerebrospinal fluid (CSF) is made. Dr. Fame is dedicated to understanding prenatal brain development and CSF biology to inform strategies to treat neurodevelopmental diseases.Click here to register.<\/a><\/p>\n Did you catch our announcement about our National Conference? We will be in Indianapolis, home of the CDMRP-funded Hydrocephalus Research Center at Indiana University. Stay up to date on conference announcements and registration here.<\/a><\/p>\n Be sure to visit our <\/span>Advocacy Center<\/span><\/a> and take action on our legislative alerts. We need to ensure that Congress is hearing us loudly! <\/span><\/p>\n\r\n Introduction of the Medical Research for Our Troops Act:<\/b><\/h3>\n
Reintroduction of the CONNECT for Health Act:<\/b><\/h3>\n
\nPARTNERSHIPS IN THE HEALTH SPACE<\/h2>\n
Preventing Medicaid Cuts:<\/h3>\n
\nRECENT POLICY ARTICLES, STATEMENTS, AND ACTION ALERTS<\/h3>\n
\nOPPORTUNITIES TO ENGAGE<\/h3>\n
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