Cosponsor the CONNECT for Health Act

The Hydrocephalus Association has joined dozens of other patient groups in supporting the Creating Opportunities Now for Necessary and Effective Care Technologies (CONNECT) for Health Act of 2023, which has been introduced in both the U.S. House of Representatives and Senate (HR 4189/S 2016). If passed, this bipartisan bill would expand coverage of telehealth services through Medicare, make permanent COVID-19 telehealth flexibilities, improve health outcomes, and make it easier for patients to safely connect with their doctors.

Improving access to care through telehealth opportunities would offer significant benefits to the hydrocephalus community. 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.

Please take a moment to ask your elected officials to cosponsor this legislation.

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Dear [Decision Maker],

I write today to urge you to cosponsor the CONNECT for Health Act (HR 4189/S.2016). This bipartisan legislation would provide hydrocephalus patients in your district/state and across the country with increased access to critical, life-saving care. Expanding coverage of telehealth services through Medicare and making permanent COVID-19 telehealth flexibilities will make it easier for patients to safely connect with their doctors or with specialists experienced in the diagnosis and treatment of hydrocephalus. For hydrocephalus patients and their families, the benefits are substantial. These approaches will be more cost-effective than the current provision of care and, more importantly, improve outcomes for patients.

Hydrocephalus, an abnormal accumulation of cerebrospinal fluid in the bran, is a life-threatening condition that affects approximately 1 million Americans. Anyone can develop hydrocephalus as a result of a traumatic brain injury, including premature babies, active duty service members, and veterans. Individuals can also be born with it, develop it as part of the aging process, or acquire it as a result of infections or brain tumors, among other causes.

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The only treatment for this condition is brain surgery, in which a shunt is placed in the brain to drain fluid to another part of the body. Because shunts have high failure rates, the nature of this condition often requires unexpected and immediate access to medical care. Unfortunately, many patients must go to the emergency room to have their symptoms evaluated. For those patients who drive more than an hour to reach their hospital, telehealth appointments could eliminate such long and costly trips to the emergency room when there is a suspected problem. It could also allow for routine care visits for these families. Hydrocephalus is a complex condition. For families that are seeking second opinions or consultations, telehealth allows access to major medical and research facilities with the leading U.S. neurological experts. While this benefits hydrocephalus patients across the age, for seniors in particular, this could eliminate the high rate of misdiagnoses, allowing early treatment and better long-term outcomes.

The COVID-19 pandemic has brought telehealth approaches to the forefront as an effective means for patients to continue to have access to needed care. On behalf of myself and others in the hydrocephalus community, I urge you to support efforts to build on these approaches as a means to help patients, their families, and their medical providers experience the best outcomes possible for this debilitating condition. Please cosponsor HR.4189/S.2016 to demonstrate your commitment to helping our community as we deal with this devastating condition.

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[Your Name]
[Your Address]
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[Your Email]