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Sen. Hicks files bill to help rare disease patients/families better navigate health care challenges

OKLAHOMA CITY – Sen. Carri Hicks has filed legislation for the 2024 session to help address the unique challenges facing Oklahomans with rare diseases. Senate Bill 1772 would establish the Oklahoma Rare Disease Advisory Council (RDAC) within the State Department of Health. The council would provide guidance and recommendations to assist with the development of public policy on rare diseases.

According to the National Organization for Rare Disorders (NORD), there are over 7,000 rare diseases impacting an estimated 30 million Americans, and more than half of those are children. Hicks, D-Oklahoma City, met constituent Sky Collins, whose family is impacted by a rare disease, at a town hall meeting. Hicks said Collins gave insight into the difficult search for a diagnosis and treatment for rare diseases.

“I really appreciate Sky for being so forthcoming about her family’s experience with their daughter, Presley, who has Malan Syndrome. She’s one of only 300 people in the world with this condition, and one of only three in Oklahoma,” Hicks said. “Sky is a courageous advocate for people with rare diseases, and for how establishing an RDAC would improve lives and reduce health care costs through better policy.”

Malan Syndrome can result in intellectual disability, low muscle tone, information processing delay, and heart problems. Collins said from the time their daughter was born, she experienced serious health issues. They went from a two-income family to one as Collins’ husband now provides support to their daughter full-time. She said the search for an accurate diagnosis took years.

“Between nine months and eight years of age our daughter had 10 genetic tests. Some were private pay, and some were through SoonerCare, but all of them were very expensive, costing thousands and thousands of dollars. At eight and a half, we got the diagnosis of Malan Syndrome, and at age nine, she began seeing a cardiologist. She should have been seeing one since birth,” Collins said. “Having a Rare Disease Advisory Council would provide our elected officials and agencies with the expertise needed to create better policy so that other individuals and families impacted by rare diseases will get the right treatment sooner.”

According to a 2023 study by the EveryLife Foundation for Rare Diseases, on average, rare disease patients spend more than six years searching for a diagnosis. The estimated avoidable costs due to delayed diagnosis, in terms of medical expenses and productivity loss in the pre-diagnosis years, range from $86,000 and $517,000 per patient cumulatively for the years of delay. Hicks said having expert policy guidance will help address these and other issues.

Under SB 1772, the council would:

  • Convene public hearings and solicit comments from the public to survey the needs of the rare disease community in Oklahoma.
  • Provide testimony and comments on pending legislation and regulations before the Legislature.
  • Develop policy recommendations to improve patient access to, and quality of, rare disease specialists and other needed services.
  • Identify areas of unmet need for research and opportunities for collaboration across stakeholders that can inform future studies and work done by the RDAC.

“Having the expertise and guidance of this council can help us save taxpayer dollars, reduce costs for individuals and families, and improve the quality of life and health outcomes for children and adults with rare diseases,” Hicks said.

Lindsey Viscarra, the state policy Manager for NORD, said more than half of U.S. states already have RDACs in place.

“On behalf of the one-in-10 Oklahomans with rare diseases, we thank Senator Hicks for her steadfast commitment to establish a Rare Disease Advisory Council in Oklahoma. In creating this council, Oklahoma would join twenty-seven other states that have already enacted legislation in support of their rare disease community. We know that having an RDAC can be an invaluable resource,” Viscarra said. We look forward to working with Senator Hicks on this important legislation.”

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For more information, contact:  Sen. Carri Hicks at 405-521-5543 or Carri.Hicks@oksenate.gov.