Additional and dedicated federal funding is needed for cerebral palsy research

On this Cerebral Palsy Awareness Day, it is important to recognize that there is no dedicated source of federal funding to study the causes, treatments and therapies or to train medical professionals to best support those with cerebral palsy (CP) and their families.

Approximately 1 million Americans have CP, which is the most common lifelong motor disability. Cerebral palsy is caused by damage or abnormalities in a developing brain, which can permanently affect body movement and muscle coordination. It is more common among boys than girls, and more common among children of minorities. Each case of CP is different, with symptoms ranging from mild to severe. Therapies, surgery and medications can help to minimize effects, but there is no cure.

I appreciate my colleagues from the 117th Congress who provided $2 million to reestablish monitoring for CP through the Centers for Disease Control and Prevention’s (CDC) Autism and Developmental Disorder Monitoring (ADDM) Network. Funding for CP monitoring had fallen off under the ADDM Network due to strained budgets. This restoration of monitoring the incidence of CP is a great first step. But, additional and dedicated funding from the federal government is needed to reduce incidence of CP, determine the most beneficial long-term therapies, and develop a standard of care that can be adopted by health care professionals. Currently, CP researchers must compete for federal research grants with other diseases and disorders, many of which affect dramatically fewer people or have other dedicated sources of federal funding.

The complexity of CP calls for targeted federal funding. People with CP usually have one or more accompanying issues including, but not limited to, chronic pain, epilepsy, learning disabilities, mobility issues, impaired vision, spinal deformities and other orthopedic conditions, speech and language disorders, autism and poor bone density. Research into how these conditions interact will lead to best practices on improving lifelong health and wellness and maximizing the abilities of those with CP.

Beyond research, the medical community needs additional training on how to diagnose CP as early as possible. Diagnosis of CP can occur as early as 6 months, but often does not occur until a child is 2 years of age or older. Early diagnosis can open doors to critical resources, including health insurance, therapies and federal Supplemental Security Income (SSI) benefits. Early access to physical therapy, occupational therapy and speech therapy when the brain is young and developing neural pathways has long-term benefits. Health insurance and SSI can provide untold benefits to a family that is adjusting to having an infant who needs specialized medical appointments, therapies and developmental support.

A greater understanding of how CP affects the body is also needed across the medical field. Many adults with CP visit children’s hospitals for their care due to a general heightened interest in CP within pediatric medicine. While it is generous that children’s hospitals support the continuation of care, adults should not be dependent on them for care. It is a disservice to everyone involved because pediatric clinical models typically include physical therapy, orthopedics and neurology, but do not include organ system concerns of older patients like cardiology, musculoskeletal issues or mental health. It also strains the availability of those select CP-informed practitioners for children with CP, who often wait months for an initial screening. With a comprehensive standard of care and additional availability of medical training about CP, health care professionals can better serve patients with CP across the lifespan.

As the sponsor of the Cerebral Palsy Research Program Authorization Act, which would create a program with dedicated research funding under the CDC, I hope my colleagues in Congress will join me in recognizing the need to expand research into cerebral palsy, build on the recent investment in the ADDM Network, and support additional avenues for dedicated federal research funding to benefit people living with cerebral palsy and their families.

Steve Cohen represents Tennessee’s 9th District.