
RFK Jr.'s $50M autism initiative sparks hope and skepticism
The increased prevalence is attributed to improved access to screening, the CDC has said.
'This [initiative] is an opportunity to supercharge what we are doing,' said
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'If we get the money,' Rubenstein said, 'I think we can do a lot of what the [National Institutes of Health] wants us to do, but then we'll have this resource that we can look at outcomes of particular interest … to support the autism community.'
When Kennedy first made his pledge in April to determine the causes of autism, researchers worried it could undermine decades of science by promoting discredited theories linking vaccines to autism.
The
The initiative's guidelines do not specifically list vaccines as a potential nongenetic factor to be studied, but do include pharmaceutical exposure as one possible influence.
Often, researchers face hurdles trying to combine different large databases because of incompatible formats.
BU scientist,
Her proposed mega-dataset would combine census data, including median income, along with other sources, such as proximity to health care and autism specialists in different communities, to see if there are common trends.
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'A big part of this application is to not only see if we ... answer questions, but also figure out where the gaps are in research,' Dukes said.
She, however, has reservations that the data she provides might be misconstrued by people who oppose vaccines.
'But that can happen anywhere,' Dukes said. 'I hope good science, in this case, wins.'
Between 10 and 25 grants are expected to be awarded, with most not expected to exceed $5 million for each two- or three-year project, according to the NIH's guidelines. By comparison, the most common NIH grant typically averages a fraction of that amount,
A
It also expressed concern that NIH staff, under the initiative's guidelines, will be involved in the grant review process itself and have far greater involvement in the execution of the funded projects than is standard.
The process, it said in a statement, 'lacks transparency in the awarding and execution of the research to be conducted.'
Still, Rubenstein, from BU, said the larger grants would give him a chance to amass more data than he is able with much smaller NIH awards.
His proposal aims to create a massive dataset combining health insurance claims from Medicaid, Medicare, and private insurers, along with census data to, for instance, provide researchers with a clearer picture of autism's prevalence by Zip code. That may help shed more light on the link between environmental exposures and autism.
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Lee has found that some medications taken during pregnancy,
'The way that science had been done before by myself and everyone else is, we looked at suspect medications one at a time, or a handful of drugs,' he said.
'It's a great opportunity to do work in this area. I think everyone, regardless of political affiliation, is interested in the health and well-being of our children and our population,' Lee said. 'Hopefully, some good will come of this funding opportunity.'
Mriganka Sur, a professor at the Massachusetts Institute of Technology and director of the
'I do remain worried and even a little skeptical of the goals of this,' said Sur, who turned down an NIH request to review the grant applications because data science is not his expertise.
But, he added, 'it behooves us to support things that can lead to good science. And, as of now, it is possible, even likely, that some good work will come out of this.'
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MEHMET OZ: Well, the president's letter on Thursday for most favored nation pricing is a good example of that, and he's been working on this tirelessly since the first administration. And just to put this in context for many of the viewers, about two thirds of bankruptcies in America are caused by health care expenses. About a third of people when they go to the pharmacy, they leave empty handed. They can't afford the medication. So the President has said, Enough global freeloading. We've been covering much of the development costs for new drugs to cure cancer, deal with lots of other illnesses that are life threatening. It is in time for the American public to understand that we should not be paying three times more for the exact same medication in the same box, made in the same factories. The president's saying, equalize it out. Let's use a model that's worked, for example, for external threats, that's what NATO did. Everyone has to pay a little more. We'll pay extra too, but we won't pay a lot more than everybody else, so they actually have to raise their contributions, in this case, to an internal threat, which is illness. We'll pay a little less than America that way more Americans can afford these medications, and it's a fair system for the entire globe. MARGARET BRENNAN: So this was declared in these letters that were sent out to 17 pharmaceutical companies this past week, and it calls for extending that to Medicaid drug prices. Is that intended to offset what will be, you know, cuts to Medicaid? And do you know, you know, if the companies are actually going to follow through on this, like, how do you actually strong arm them into doing it? DR. OZ: Well just get the numbers correct. We're putting 200 billion more dollars into Medicaid. So we're actually investing— MARGARET BRENNAN: —by the time when costs are going up, so. DR. OZ: Costs are going up, but there's been a 50 percent increase in the cost of Medicaid over the last five years. So I'm trying to save this beautiful program, this noble effort, to help folks giving them a hand up. And as you probably gather, if Medicaid isn't able to take care of the people for whom it was designed, the young children, the dawn of their life, those are the twilight of their life, the seniors and those who are disabled living in the shadows, as Hubert Humphrey said, then we're not satisfying the fundamental obligation of a moral government. And this President has said over and over that he believes that it is the wise thing and the noble thing to help those who are vulnerable and every great society does that, we're going to as well. So we're going to invest in Medicaid as is required, but we want an appropriate return on that investment. One thing that Medicaid patients should not face are drug prices they can't afford. MARGARET BRENNAN: Right, how do you enforce this? Pharmaceutical companies— DR. OZ: Well, the pharmaceutical companies, if you sit them down quietly, Margaret, and we've done that, and say you went into this business at some point, because you cared about people. I know there's many out there shaking their heads, but that is actually the truth. People go into health care, whether they're pharmaceutical companies or insurance companies or the PBMs or anybody in the space. Even at the CMS, the most impressive thing to me in my new task, and the President has appointed me to, is the remarkable quality of people within the organization, just unbelievably talented. They went into this job because they care about health care and about people. Somewhere along the lines, people forget. They put numbers ahead of patients. And when that happens, then you start running into problems. We went to the pharmaceutical companies and we said, you appreciate this is not a fair system. We should not be paying more in America, three times more, for your products than you charge in Europe. They get the joke. They understand the reality of this problem. They are engaging with us. We're in the middle of those negotiations. The President has a unique power to convene. We've done it with dealing with prior authorization, this heinous process where patients feel like they're trying to get care from a doctor. Everything's being done except all of a sudden the arm of insurance comes in and stops the whole process for unknown reasons for weeks, sometimes months. The insurance companies, representing 80 percent of the American public, got together and they said, because we pushed them, we're going to deal with this. We can do the same, I believe, with the pharmaceutical industry, with most favored nation pricing. MARGARET BRENNAN: Let me ask you about the changes that are coming because of this new law to Medicaid, which is jointly administered between the feds and the states. There are major reduction- reductions to federal health care spending here, one of the changes are these work requirements. It's about 20 hours a week, volunteer or work to qualify for health care. What is the guidance you are giving to states on how to implement this? Because in this economy, things are more complicated. Uber driver, independent contractor, how do they show they work their 20 hours a week? DR. OZ: Last weekend, I was at the National Governors Association with Secretary Kennedy, who has been a big advocate of work as well. Every Democratic president and Republican president has said that the foundation of a healthy welfare system of a social system of support is work. MARGARET BRENNAN: Right, but I'm asking how you actually implement that and register it so that people who are working do qualify, and they don't get caught up in paperwork because they didn't file something on time. DR. OZ: As long as we're okay that people should work and would want to work, and it's not just work, it's community engagement. They can go get educated, right? They can take care of family members. They can contribute in other ways, but work is a great way of doing and get you out of poverty if you can find jobs and elevate yourself. There have been efforts to do this in the past, but they haven't been able to achieve what we can achieve, because we have technologies now. And we've invested already, as soon as the bill was signed, began pilots to try to demonstrate that we can actually do this correctly. We have pilots now in Louisiana and in Arizona, in both cases, within seven minutes, you can click on where you're working. You mentioned Uber, you're an Uber driver. You click that button on your phone. It just takes you to your payroll provider. Let's say it's ADP. We then ask your permission, can we connect with this payroll provider to demonstrate what you've actually been able to work and earn over the past month? This also, by the way, confirms your eligibility. But there's a bigger benefit here. Once you do that, you're in, you're done. However, what if we take one step further, Margaret? What if we go beyond just proving that you tried the work to actually say, You know what, you didn't work enough, but we can actually help you by connecting you through an employment office? MARGARET BRENNAN: So you're still figuring out the technology, but isn't there an end-of-December deadline for a lot of these things to be figured out? And how do you make sure that people don't get kicked off? Because in the state of Georgia, which already had work requirements, they have really struggled to make this work. DR. OZ: Well, a couple of things. It's not the end of December, it's end of December a year from now, and Georgia is apples and oranges. Georgia had a program only for people under the poverty level, and for those people, if they wanted, they could elect to come into a system to help them get jobs. There have been 50,000 reduction in head count of uninsured people in the overall program in the last five years. Overall, Georgia, 2 million less uninsured people. So Georgia is using a lot of tactics, and they're going in the right direction. I would argue that if you have confidence in the American people and their desire to take to offer to try to get a job, if we challenge you to that. And remember, if you're an able-bodied person on Medicaid, you're spending 6.1 hours watching television or leisure time, so you don't want that— MARGARET BRENNAN: —Well, KFF Health Policy found 92 percent of adult Medicaid recipients already are working. Or they have the carve out because they have to have caregivers, or they have to do other things. DR. OZ: They're fine. All they have to do is there'll be a simple app. If you've already carved out, that's super simple. If you're supposed to be if you're able-bodied and supposed to be working, we want to help connect you to the job market and get you into work. We have twice as many jobs available in America as people who seem to want them. The foundation of work is not just about fulfilling eligibility. The goal of health care insurance is to catalyze action in the right direction, to get you healthier, to give you agency over your future, so you recognize you matter, and you should have a job, therefore to go out and change the world. MARGARET BRENNAN: So there's a drug addiction problem in this country. How are those changes going to impact people who are on Medicaid in states like Kentucky, in states like West Virginia? DR. OZ: In many instances, there are carve outs for folks who have substance use disorder problems. There are programs-- MARGARET BRENNAN: —How do they prove that? ADMINISTRATOR OZ: Well, they can— MARGARET BRENNAN: Is this in the app? DR. OZ: Yes, it will be in the app. The app, again, this is being developed by the United States Digital Service, led by Amy Gleason, who is a wonderful technologist. She and I were with the President and Secretary Kennedy and the head of the czar for AI in this country on Wednesday, talking about overall how we're going to change the use of health technology in America. We've got to get into 2025 with health technology, as is true in every other sector. If you're watching the show right now, you could also be streaming media. You could take an Uber somewhere, the rideshare. You could do an Airbnb. Technology should make the system more efficient. We should have confidence that it will also allow us to do what we all agree is possible. If the whole challenge to a work requirement is that you don't have confidence in our ability to accomplish it, that's a separate question, because I do have confidence in the American people, and we have confidence we can pull this off. Look at the passport system, Margaret. Right now, you can go and get a passport in two weeks without having to go to the post office, send pictures, and all that's gone. It's fixable. Let's use technology. MARGARET BRENNAN: I'm still confused on how someone who is in the throes of substance abuse is going to use an app to say, I'm in the throes of substance abuse every week, to file on online— DR. OZ: —When they go in to get their help for their substance abuse treatment, assuming they're going for help on that, they can also get enrolled in, in those requirements, can be fulfilled. We want to talk to them in as many ways as possible. It's not going to happen just because we put an app out there, you, you have social workers and other folk elements who care a lot about this population, who are coming together, but they have to have some mechanism to report back. That just has not been done well. MARGARET BRENNAN: Well, and this is incredibly detailed, and that's why we wanted to have you on. I have so many more questions for you on rural hospitals and some of the other criticisms. I have to leave it there for now. But thank you, Dr. Oz-- DR. OZ: Can I give you 30 seconds on rural hospitals, because this is important. You have 7 percent of Medicaid money going to rural hospitals. We're putting 50 billion dollars the president wants us to, Congress wants to— MARGARET BRENNAN: There are a lot questions on how you're going to duel that out, and whether you have already made promises. Do you have any specifics for us? DR. OZ: Yes. Wait, wait, it's going to be, they'll get the applications in early September. The money is designed to help you with workforce development, right sizing the system and using technology to provide things like telehealth that can change the world. Imagine if we can change the way we think about the delivery of health and make it more about getting people healthy so they can thrive and flourish and be fully present in their own lives and as Americans. MARGARET BRENNAN: Dr Oz, we'll leave it there. We'll be back in a moment. Black swimmers teach others amid history of aquatic segregation How safe is our Social Security safety net? In Gaza, hunger forces impossible choices as Hamas releases propaganda video of hostage Solve the daily Crossword