State law creating uterine fibroid research database not implemented 4 years later – what 1 lawmaker is doing

Push to create uterine fibroid research database

Lawmakers approved it, Governor Ron DeSantis signed it, but the law never actually got implemented four years ago to establish the uterine fibroid research database. FOX 13's Briona Arradondo reports. 

TALLAHASSEE, Fla. - Lawmakers approved it, Governor Ron DeSantis signed it, but the law never actually got implemented four years ago to establish the uterine fibroid research database.

What we know:

The original bill’s sponsor, former state representative Anika Omphroy, said she wanted to create a uterine research database to help track the prevalence of uterine fibroids and treatments, plus educate women about what they are. She said everything was done correctly on the legislative side in 2022.

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Omphroy said things fell apart on the administrative side with the Florida Department of Health. She found that out after leaving office when State Representative Lisa Dunkley followed up on progress with the database. 

The health department was getting patient data but didn’t know who it was from, because the personal identifying information was redacted. So, the database couldn’t work.  

"The problem that we had that Representative Dunkley is fixing is that it had the information coming in redacted. So, we would end up with double information, whereas that's what they told us we needed to do. So after the fact, they tell us, oh, we don't need to redact it," said Omphroy. "There was funding set aside, $800,000 of funding was set aside that the state sent back to the general fund.  What Representative Dunkley is doing is she's going back in there and getting those funds that they sent back without reason."

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So, Rep. Dunkley, D-Broward County, introduced a new bill, House Bill 327. It re-establishes the database to include personal identifying information, but it would be protected.

"We need that database to be able to serve the women of Florida and, hopefully, more people will take it on to see that this is something that is necessary in our community," said Dunkley.

Dig deeper:

The point of the research database is to be able to track how prevalent uterine fibroids are, what treatments doctors are using, and educate more people about them. That matters, because the non-cancerous tumors are very common, and they can cause pelvic, anemia, bleeding, fertility problems and more. Studies show an estimated 70-80% of all women develop them by age 50.

"These are things that have impact in women's health. So, it's important to have an idea of how this condition works to give better care to the patient. It's an area of active research," said Dr. Chris Nnoli, an OBGYN with AdventHealth Tampa. "I believe that this is something that is very, especially for the quality of living, the way it affects quality of life."

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"Look at the risk factors that would predispose a patient to fibroids. It's still an area of active research. We are trying to figure out, do we have preventative measures? Is there a way we can prevent fibroid?" said Nnoli. "So, we don't have a system right now where we can say, ‘This is how you prevent fibroids. This is the optimal way to manage fibroids. This, why you have fibroids.’ We don't know that yet."

Uterine fibroids can go undetected. Dr. Nnoli said they affect all women, but black women are diagnosed at a much higher rate, making research and tracking important.

What's next:

House Bill 327 passed all the committees and is now headed to the House floor for a vote. Now, it’s up to the Senate to take up its version of the bill to fix what was already a law.