HOUSTON, Texas (KTRK) — Accompanied by her husband and daughter, Wendy Rosenthal took part in a Zumba class at the Jewish Community Center in Houston for her 60th birthday.
Only she didn’t know it was her birthday. Wendy, a former bookseller, is now in a full-time memory care unit and suffers from frontotemporal dementia (FTD), a rare form of a disease that strips away the brain’s basic functions like speech, recognition, and memory.
“I first noticed something was wrong when she was losing the meaning for certain things, like a salt shaker or chair, or pen. It’s kind of progressed now to where she just doesn’t understand anything that I’m telling her or asking her. It’s been hell,” Lowell Rosenthal, Wendy’s husband and longtime caregiver, said.
Wendy is one of more than six million Americans, the National Institute for Health (NIH) reports, who are living with some form of dementia. The deadly disease, which includes Alzheimer’s, has no cure and limited treatment options. In Texas, more than 500,000 people currently live with some form of dementia, and another 1.1 million Texans serve as unpaid caretakers for victims, according to state health data.
This election, voters in Texas will decide on a $3 billion fund passed by state lawmakers aimed at changing the score.
Proposition 14 would establish the Dementia Prevention and Research Institute of Texas (DPRIT). The legislation was a priority for Lt. Governor Dan Patrick this past session and received large bipartisan support in both Texas chambers.
“After hearing countless stories of Texans whose lives were shattered by this silent killer, I felt it was time. Texas, with our vast resources, has an opportunity to make a positive difference in the lives of millions,” Patrick said in a statement.
The legislation requires a constitutional amendment to use taxpayer money to fund the institute, carved out from the state’s $24 billion revenue surplus.
“What we’re being asked is to say, ‘Yes, we’re willing to fund it,’ ” Heidi Russell, director of the Center for Health Policy at Rice University’s Baker Institute, said while speaking to ABC13. “Texas has this interesting need to do a bunch of constitutional amendments. It’s very different than the federal government. So, it’s just a way of voters having to say “yes or no” to what amounts to a $3 billion investment in research around dementia in Texas.”
THE PRICE OF DEMENTIA CARE
DPRIT is modeled after the state’s Cancer Prevention and Research Institute of Texas (CPRIT), approved by voters in 2007 and now the nation’s second-largest funder of cancer research. A nine-person committee appointed by top lawmakers would award money for dementia-related initiatives. Spending is capped at $300 million per year over a decade.
Russell says DPRIT has the chance to be highly impactful, stressing that Texas and the nation are “behind the 8-ball” when it comes to dementia.
“We don’t even know why most people get dementia. So, there’s a lot we can’t prevent, because we don’t know what we’re doing,” she said.
The network necessary for dementia care exacts a heavy financial toll on families like the Rosenthals and the state of Texas. According to data from the Texas Department of Health and Human Services, an estimated 1.3 billion hours of unpaid care are provided by families of dementia victims, at a value of $23 billion.
Dementia care costs the state Medicaid program $3.9 billion.
“We’re going to see this increasing number of people, a greater economic and social impact in the state, and we don’t have a way to mitigate that right now. The benefit of things like DPRIT is that they address that head-on,” Russell said.
The fund also aims to bring national research entities into the Texas economy.
“This investment will draw leading researchers and companies to Texas and require them to be based in Texas, leading to their further investment in our state,” Patrick said.
ABC13 was granted access to Houston Methodist’s frontotemporal degeneration unit, where doctors are treating patients like Wendy while using their brains for research to better understand a rare form of the disease.
Dr. Joseph Masdeu supports Proposition 14, noting that a national coalition of researchers previously established by the NIH has advanced their work on frontotemporal dementia.
“You cannot do a study with fifteen people. It’s impossible. These diseases are very unusual, and that’s why we combine resources,” Dr. Masdeu said. “Now that the NIH is going through some difficulties, (DPRIT) is extremely important because it’s going to allow us to bring into Texas researchers and more resources to be able to battle these decisions.”
STATE-RUN FUND INVITES SCRUTINY
Legislators who opposed the bill include Rep. Brian Harrison, R-Midlothian, who chastised the state legislature over the proposed $3B institute in a speech from the House floor on April 23rd.
“What good could be done in the private sector with the $3 billion instead of the government taking it, handing it to bureaucrats to spend as bureaucrats see fit?” Harrison said. “This is corporate welfare on steroids.”
The Texas Policy Research Center, in a statement not endorsing the bill, writes that the fund could crowd out independent innovation and points to a 2013 scandal involving the state’s cancer fund, in which millions of dollars in grants weren’t properly vetted.
“That’s a concern for every relationship with government officials, industry, and universities. Is it particular to DPRIT? I don’t think so,” Russell said. “But when you’re talking about $3 billion, there’s a lot of money to be moved around. So transparency is going to be really key for DPRIT, and ensuring that that oversight is happening from the very get-go.”
Russell says other concerns include the use of $3 billion in taxpayer money on a single issue and an outsized role for state government in healthcare.
“I think that in the current environment of funding for research, especially biomedical research, the states are probably going to end up having to step up a bit more. Texas is particularly positioned to do that. We’re a large state. We have a large budget and a very diverse population. So we’re well set to actually do this kind of work. We’ve learned a lot of lessons from CPRIT and the mistakes they made early on, and if they take those lessons forward, I think DPRIT has a good chance to be impactful,” she said.
For people like Lowell Rosenthal and his daughter Allison, they’re hopeful the outsized effort could lead to a breakthrough. If not in Wendy’s lifetime, then for thousands of other families down the road.
“It’s a devastating disease and I wouldn’t wish it on anybody. And we need to find a cure,” Rosenthal said.
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Niko Travis is a dedicated health writer with a passion for providing clear, reliable, and research-backed information about medications and mental health. As the author behind TrazodoneSUC, Niko simplifies complex medical topics to help readers understand the benefits, uses, and potential risks of Trazodone. With a commitment to accuracy and well-being, Niko ensures that every article empowers readers to make informed decisions about their health.
