{"id":2121,"date":"2026-03-16T15:00:34","date_gmt":"2026-03-16T15:00:34","guid":{"rendered":"https:\/\/owspakistan.com\/?p=2121"},"modified":"2026-03-16T15:00:34","modified_gmt":"2026-03-16T15:00:34","slug":"leucovorin-autism-parents-treatment-prescribe","status":"publish","type":"post","link":"https:\/\/owspakistan.com\/?p=2121","title":{"rendered":"Parents demand leucovorin for autism, but doctors are torn : NPR"},"content":{"rendered":"<div id=\"storytext\">\n<div id=\"resg-s1-113697\" class=\"bucketwrap image large\">\n<div class=\"imagewrap has-source-dimensions\" data-crop-type=\"\" style=\"&#10;        --source-width: 4800;&#10;        --source-height: 2700;&#10;    \">\n        <picture><source srcset=\"https:\/\/npr.brightspotcdn.com\/dims3\/default\/strip\/false\/crop\/4800x2700+0+0\/resize\/400\/quality\/85\/format\/webp\/?url=http%3A%2F%2Fnpr-brightspot.s3.amazonaws.com%2F54%2Fa5%2Ffc8cb83d4b37a72d055f3c59867a%2Ffinal.jpg 400w,&#10;https:\/\/npr.brightspotcdn.com\/dims3\/default\/strip\/false\/crop\/4800x2700+0+0\/resize\/600\/quality\/85\/format\/webp\/?url=http%3A%2F%2Fnpr-brightspot.s3.amazonaws.com%2F54%2Fa5%2Ffc8cb83d4b37a72d055f3c59867a%2Ffinal.jpg 600w,&#10;https:\/\/npr.brightspotcdn.com\/dims3\/default\/strip\/false\/crop\/4800x2700+0+0\/resize\/800\/quality\/85\/format\/webp\/?url=http%3A%2F%2Fnpr-brightspot.s3.amazonaws.com%2F54%2Fa5%2Ffc8cb83d4b37a72d055f3c59867a%2Ffinal.jpg 800w,&#10;https:\/\/npr.brightspotcdn.com\/dims3\/default\/strip\/false\/crop\/4800x2700+0+0\/resize\/900\/quality\/85\/format\/webp\/?url=http%3A%2F%2Fnpr-brightspot.s3.amazonaws.com%2F54%2Fa5%2Ffc8cb83d4b37a72d055f3c59867a%2Ffinal.jpg 900w,&#10;https:\/\/npr.brightspotcdn.com\/dims3\/default\/strip\/false\/crop\/4800x2700+0+0\/resize\/1200\/quality\/85\/format\/webp\/?url=http%3A%2F%2Fnpr-brightspot.s3.amazonaws.com%2F54%2Fa5%2Ffc8cb83d4b37a72d055f3c59867a%2Ffinal.jpg 1200w,&#10;https:\/\/npr.brightspotcdn.com\/dims3\/default\/strip\/false\/crop\/4800x2700+0+0\/resize\/1600\/quality\/85\/format\/webp\/?url=http%3A%2F%2Fnpr-brightspot.s3.amazonaws.com%2F54%2Fa5%2Ffc8cb83d4b37a72d055f3c59867a%2Ffinal.jpg 1600w,&#10;https:\/\/npr.brightspotcdn.com\/dims3\/default\/strip\/false\/crop\/4800x2700+0+0\/resize\/1800\/quality\/85\/format\/webp\/?url=http%3A%2F%2Fnpr-brightspot.s3.amazonaws.com%2F54%2Fa5%2Ffc8cb83d4b37a72d055f3c59867a%2Ffinal.jpg 1800w\" data-template=\"https:\/\/npr.brightspotcdn.com\/dims3\/default\/strip\/false\/crop\/4800x2700+0+0\/resize\/{width}\/quality\/{quality}\/format\/{format}\/?url=http%3A%2F%2Fnpr-brightspot.s3.amazonaws.com%2F54%2Fa5%2Ffc8cb83d4b37a72d055f3c59867a%2Ffinal.jpg\" sizes=\"(min-width: 1025px) 650px, calc(100vw - 30px)\" class=\"img\" type=\"image\/webp\"\/><source srcset=\"https:\/\/npr.brightspotcdn.com\/dims3\/default\/strip\/false\/crop\/4800x2700+0+0\/resize\/400\/quality\/85\/format\/jpeg\/?url=http%3A%2F%2Fnpr-brightspot.s3.amazonaws.com%2F54%2Fa5%2Ffc8cb83d4b37a72d055f3c59867a%2Ffinal.jpg 400w,&#10;https:\/\/npr.brightspotcdn.com\/dims3\/default\/strip\/false\/crop\/4800x2700+0+0\/resize\/600\/quality\/85\/format\/jpeg\/?url=http%3A%2F%2Fnpr-brightspot.s3.amazonaws.com%2F54%2Fa5%2Ffc8cb83d4b37a72d055f3c59867a%2Ffinal.jpg 600w,&#10;https:\/\/npr.brightspotcdn.com\/dims3\/default\/strip\/false\/crop\/4800x2700+0+0\/resize\/800\/quality\/85\/format\/jpeg\/?url=http%3A%2F%2Fnpr-brightspot.s3.amazonaws.com%2F54%2Fa5%2Ffc8cb83d4b37a72d055f3c59867a%2Ffinal.jpg 800w,&#10;https:\/\/npr.brightspotcdn.com\/dims3\/default\/strip\/false\/crop\/4800x2700+0+0\/resize\/900\/quality\/85\/format\/jpeg\/?url=http%3A%2F%2Fnpr-brightspot.s3.amazonaws.com%2F54%2Fa5%2Ffc8cb83d4b37a72d055f3c59867a%2Ffinal.jpg 900w,&#10;https:\/\/npr.brightspotcdn.com\/dims3\/default\/strip\/false\/crop\/4800x2700+0+0\/resize\/1200\/quality\/85\/format\/jpeg\/?url=http%3A%2F%2Fnpr-brightspot.s3.amazonaws.com%2F54%2Fa5%2Ffc8cb83d4b37a72d055f3c59867a%2Ffinal.jpg 1200w,&#10;https:\/\/npr.brightspotcdn.com\/dims3\/default\/strip\/false\/crop\/4800x2700+0+0\/resize\/1600\/quality\/85\/format\/jpeg\/?url=http%3A%2F%2Fnpr-brightspot.s3.amazonaws.com%2F54%2Fa5%2Ffc8cb83d4b37a72d055f3c59867a%2Ffinal.jpg 1600w,&#10;https:\/\/npr.brightspotcdn.com\/dims3\/default\/strip\/false\/crop\/4800x2700+0+0\/resize\/1800\/quality\/85\/format\/jpeg\/?url=http%3A%2F%2Fnpr-brightspot.s3.amazonaws.com%2F54%2Fa5%2Ffc8cb83d4b37a72d055f3c59867a%2Ffinal.jpg 1800w\" data-template=\"https:\/\/npr.brightspotcdn.com\/dims3\/default\/strip\/false\/crop\/4800x2700+0+0\/resize\/{width}\/quality\/{quality}\/format\/{format}\/?url=http%3A%2F%2Fnpr-brightspot.s3.amazonaws.com%2F54%2Fa5%2Ffc8cb83d4b37a72d055f3c59867a%2Ffinal.jpg\" sizes=\"(min-width: 1025px) 650px, calc(100vw - 30px)\" class=\"img\" type=\"image\/jpeg\"\/><img decoding=\"async\" src=\"https:\/\/npr.brightspotcdn.com\/dims3\/default\/strip\/false\/crop\/4800x2700+0+0\/resize\/1100\/quality\/50\/format\/jpeg\/?url=http%3A%2F%2Fnpr-brightspot.s3.amazonaws.com%2F54%2Fa5%2Ffc8cb83d4b37a72d055f3c59867a%2Ffinal.jpg\" data-template=\"https:\/\/npr.brightspotcdn.com\/dims3\/default\/strip\/false\/crop\/4800x2700+0+0\/resize\/{width}\/quality\/{quality}\/format\/{format}\/?url=http%3A%2F%2Fnpr-brightspot.s3.amazonaws.com%2F54%2Fa5%2Ffc8cb83d4b37a72d055f3c59867a%2Ffinal.jpg\" class=\"img\" alt=\"final.jpg\" fetchpriority=\"high\"\/>\n        <\/picture>\n<\/div><\/div>\n<p>Swathi Balantrapu has been searching for a treatment for her 10-year-old son with autism.<\/p>\n<p>She first tried applied behavior analysis therapy, or <a href=\"https:\/\/www.npr.org\/sections\/shots-health-news\/2025\/12\/23\/nx-s1-5643014\/autism-aba-therapy-medicaid-costs\" target=\"_blank\" rel=\"noopener\">ABA therapy<\/a> \u2014 an evidence-based approach. She later pursued a $7,000 movement and stretching program. Like many parents of autistic kids, she also <a href=\"https:\/\/pubmed.ncbi.nlm.nih.gov\/37147047\/\" target=\"_blank\" rel=\"noopener\">turned to alternative options<\/a>, including a stem-cell therapy treatment in Germany, costing $40,000 per year, repeated over the past three years.<\/p>\n<p>After a press conference last fall, where federal health officials <a href=\"https:\/\/www.npr.org\/sections\/shots-health-news\/2025\/09\/25\/nx-s1-5552751\/autism-leucovorin-folinic-acid-folate-vitamin-reality-check\" target=\"_blank\" rel=\"noopener\">touted a new treatment<\/a> for autism, Balantrapu found a new reason to hope her son&#8217;s condition could be cured.<\/p>\n<p>&#8220;I would do anything for my child,&#8221; she said. &#8220;Maybe there is something to it. It just feels like one last stone unturned.&#8221;<\/p>\n<aside id=\"ad-backstage-wrap\" class=\"ad-wrap backstage\" aria-label=\"advertisement\">\n<\/aside>\n<p>The treatment in question is <a href=\"https:\/\/www.npr.org\/sections\/shots-health-news\/2025\/09\/25\/nx-s1-5552751\/autism-leucovorin-folinic-acid-folate-vitamin-reality-check\" target=\"_blank\" rel=\"noopener\">leucovorin<\/a>, a derivative of vitamin B9 \u2014 also called  folinic acid \u2014 that is commonly used during <a href=\"https:\/\/www.npr.org\/2026\/01\/19\/nx-s1-5560775\/a-once-obscure-cancer-drug-has-become-a-celebrity-in-the-autism-community\" target=\"_blank\" rel=\"noopener\">cancer treatment<\/a>. Federal officials said it could help treat a <a href=\"https:\/\/rarediseases.org\/rare-diseases\/cerebral-folate-deficiency\/\" target=\"_blank\" rel=\"noopener\">rare brain condition<\/a> called cerebral folate deficiency and that it could <a href=\"https:\/\/youtu.be\/IQ1nbaa14Vo?si=SsVFtDfpBYfXAmcv&amp;t=1556\" target=\"_blank\" rel=\"noopener\">benefit<\/a> &#8220;hundreds of thousands&#8221; of kids with autism.<\/p>\n<div id=\"resnx-s1-5742676-100\" class=\"bucketwrap internallink insettwocolumn inset2col \">\n<div class=\"bucket img\">\n                  <a class=\"imagewrap\" id=\"featuredStackSquareImagenx-s1-5684294\" href=\"https:\/\/www.npr.org\/sections\/shots-health-news\/2026\/01\/22\/nx-s1-5684294\/leucovorin-autism-folic-folinic-acid-origins-vitamin-b\" data-metrics-ga4=\"{&quot;category&quot;:&quot;recirculation&quot;,&quot;action&quot;:&quot;story_recirculation_click&quot;,&quot;clickType&quot;:&quot;inset box&quot;,&quot;clickUrl&quot;:&quot;https:\\\/\\\/www.npr.org\\\/sections\\\/shots-health-news\\\/2026\\\/01\\\/22\\\/nx-s1-5684294\\\/leucovorin-autism-folic-folinic-acid-origins-vitamin-b&quot;}\" target=\"_blank\" rel=\"noopener\"><picture><source srcset=\"https:\/\/npr.brightspotcdn.com\/dims3\/default\/strip\/false\/crop\/3346x3346+684+0\/resize\/100\/quality\/85\/format\/jpeg\/?url=http%3A%2F%2Fnpr-brightspot.s3.amazonaws.com%2F82%2Fd2%2F39650d5441c782827a7e08b2aead%2Fgettyimages-2228768364.jpg\" data-original=\"https:\/\/npr.brightspotcdn.com\/dims3\/default\/strip\/false\/crop\/3346x3346+684+0\/resize\/100\/quality\/100\/format\/jpeg\/?url=http%3A%2F%2Fnpr-brightspot.s3.amazonaws.com%2F82%2Fd2%2F39650d5441c782827a7e08b2aead%2Fgettyimages-2228768364.jpg\" data-template=\"https:\/\/npr.brightspotcdn.com\/dims3\/default\/strip\/false\/crop\/3346x3346+684+0\/resize\/{width}\/quality\/{quality}\/format\/{format}\/?url=http%3A%2F%2Fnpr-brightspot.s3.amazonaws.com%2F82%2Fd2%2F39650d5441c782827a7e08b2aead%2Fgettyimages-2228768364.jpg\" data-format=\"webp\" class=\"img lazyOnLoad\" type=\"image\/webp\"\/><source srcset=\"https:\/\/npr.brightspotcdn.com\/dims3\/default\/strip\/false\/crop\/3346x3346+684+0\/resize\/100\/quality\/85\/format\/jpeg\/?url=http%3A%2F%2Fnpr-brightspot.s3.amazonaws.com%2F82%2Fd2%2F39650d5441c782827a7e08b2aead%2Fgettyimages-2228768364.jpg\" data-original=\"https:\/\/npr.brightspotcdn.com\/dims3\/default\/strip\/false\/crop\/3346x3346+684+0\/resize\/100\/quality\/100\/format\/jpeg\/?url=http%3A%2F%2Fnpr-brightspot.s3.amazonaws.com%2F82%2Fd2%2F39650d5441c782827a7e08b2aead%2Fgettyimages-2228768364.jpg\" data-template=\"https:\/\/npr.brightspotcdn.com\/dims3\/default\/strip\/false\/crop\/3346x3346+684+0\/resize\/{width}\/quality\/{quality}\/format\/{format}\/?url=http%3A%2F%2Fnpr-brightspot.s3.amazonaws.com%2F82%2Fd2%2F39650d5441c782827a7e08b2aead%2Fgettyimages-2228768364.jpg\" data-format=\"jpeg\" class=\"img lazyOnLoad\" type=\"image\/jpeg\"\/><img decoding=\"async\" src=\"https:\/\/npr.brightspotcdn.com\/dims3\/default\/strip\/false\/crop\/3346x3346+684+0\/resize\/100\/quality\/85\/format\/jpeg\/?url=http%3A%2F%2Fnpr-brightspot.s3.amazonaws.com%2F82%2Fd2%2F39650d5441c782827a7e08b2aead%2Fgettyimages-2228768364.jpg\" data-original=\"https:\/\/npr.brightspotcdn.com\/dims3\/default\/strip\/false\/crop\/3346x3346+684+0\/resize\/100\/quality\/100\/format\/jpeg\/?url=http%3A%2F%2Fnpr-brightspot.s3.amazonaws.com%2F82%2Fd2%2F39650d5441c782827a7e08b2aead%2Fgettyimages-2228768364.jpg\" data-template=\"https:\/\/npr.brightspotcdn.com\/dims3\/default\/strip\/false\/crop\/3346x3346+684+0\/resize\/{width}\/quality\/{quality}\/format\/{format}\/?url=http%3A%2F%2Fnpr-brightspot.s3.amazonaws.com%2F82%2Fd2%2F39650d5441c782827a7e08b2aead%2Fgettyimages-2228768364.jpg\" data-format=\"jpeg\" class=\"img lazyOnLoad\" alt=\"Interest in leucovorin has been on the rise among some parents of children with autism. But researchers like Dr. Paul Offit say that the drug's popularity is far ahead of the science.\" loading=\"lazy\"\/><\/picture><\/a>         <\/p>\n<p><!-- END CLASS=\"BUCKETBLOCK\" -->\n      <\/div>\n<p><!-- END CLASS=\"BUCKET IMG\" -->\n   <\/div>\n<p><!-- END ID=\"RESNX-S1-5742676-100\" CLASS=\"BUCKETWRAP INTERNALLINK INSETTWOCOLUMN INSET2COL \" --><\/p>\n<p>The announcement triggered a surge of interest among parents seeking the medication, with social media groups popping up with tens of thousands of members sharing doctors&#8217; referrals and notes. It also led to pushback from major medical groups advising against prescribing it routinely.<\/p>\n<p>This has put pressure on clinicians and led to a divide between providers and parents.<\/p>\n<p>&#8220;All of a sudden, there&#8217;s this onslaught of information being disseminated that we now have to explain, disentangle and interpret,&#8221; said <a href=\"https:\/\/profiles.ucla.edu\/shafali.jeste\" target=\"_blank\" rel=\"noopener\">Dr. Shafali Jeste<\/a>, an autism researcher at the University of California, Los Angeles. &#8220;It&#8217;s a big burden, and we&#8217;re all willing to bear it \u2026 but I think that a lot of it ends up becoming a distraction.&#8221;<\/p>\n<p>Using leucovorin to treat patients with cerebral folate deficiency is <a href=\"https:\/\/www.cambridge.org\/core\/journals\/developmental-medicine-and-child-neurology\/article\/cerebral-folate-deficiency\/AD43B9D9C79533E0AFDAD16B4AA6B3E5\" target=\"_blank\" rel=\"noopener\">not controversial<\/a>, experts told NPR \u2014 and it&#8217;s been done for decades. But they say that the Trump administration&#8217;s messaging was misleading.<\/p>\n<div id=\"resg-s1-113725\" class=\"bucketwrap image medium\">\n<div class=\"imagewrap has-source-dimensions\" data-crop-type=\"\" style=\"&#10;        --source-width: 2400;&#10;        --source-height: 2400;&#10;    \">\n        <picture><source srcset=\"https:\/\/npr.brightspotcdn.com\/dims3\/default\/strip\/false\/crop\/2400x2400+0+212\/resize\/200\/quality\/85\/format\/webp\/?url=http%3A%2F%2Fnpr-brightspot.s3.amazonaws.com%2Fe5%2F0e%2F2ce6fc38429ba3c98e9263ec2942%2Fdr-shafali-jeste.jpg 200w,&#10;https:\/\/npr.brightspotcdn.com\/dims3\/default\/strip\/false\/crop\/2400x2400+0+212\/resize\/300\/quality\/85\/format\/webp\/?url=http%3A%2F%2Fnpr-brightspot.s3.amazonaws.com%2Fe5%2F0e%2F2ce6fc38429ba3c98e9263ec2942%2Fdr-shafali-jeste.jpg 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200w,&#10;https:\/\/npr.brightspotcdn.com\/dims3\/default\/strip\/false\/crop\/2400x2400+0+212\/resize\/300\/quality\/85\/format\/jpeg\/?url=http%3A%2F%2Fnpr-brightspot.s3.amazonaws.com%2Fe5%2F0e%2F2ce6fc38429ba3c98e9263ec2942%2Fdr-shafali-jeste.jpg 300w,&#10;https:\/\/npr.brightspotcdn.com\/dims3\/default\/strip\/false\/crop\/2400x2400+0+212\/resize\/400\/quality\/85\/format\/jpeg\/?url=http%3A%2F%2Fnpr-brightspot.s3.amazonaws.com%2Fe5%2F0e%2F2ce6fc38429ba3c98e9263ec2942%2Fdr-shafali-jeste.jpg 400w,&#10;https:\/\/npr.brightspotcdn.com\/dims3\/default\/strip\/false\/crop\/2400x2400+0+212\/resize\/600\/quality\/85\/format\/jpeg\/?url=http%3A%2F%2Fnpr-brightspot.s3.amazonaws.com%2Fe5%2F0e%2F2ce6fc38429ba3c98e9263ec2942%2Fdr-shafali-jeste.jpg 600w,&#10;https:\/\/npr.brightspotcdn.com\/dims3\/default\/strip\/false\/crop\/2400x2400+0+212\/resize\/800\/quality\/85\/format\/jpeg\/?url=http%3A%2F%2Fnpr-brightspot.s3.amazonaws.com%2Fe5%2F0e%2F2ce6fc38429ba3c98e9263ec2942%2Fdr-shafali-jeste.jpg 800w,&#10;https:\/\/npr.brightspotcdn.com\/dims3\/default\/strip\/false\/crop\/2400x2400+0+212\/resize\/1200\/quality\/85\/format\/jpeg\/?url=http%3A%2F%2Fnpr-brightspot.s3.amazonaws.com%2Fe5%2F0e%2F2ce6fc38429ba3c98e9263ec2942%2Fdr-shafali-jeste.jpg 1200w,&#10;https:\/\/npr.brightspotcdn.com\/dims3\/default\/strip\/false\/crop\/2400x2400+0+212\/resize\/1600\/quality\/85\/format\/jpeg\/?url=http%3A%2F%2Fnpr-brightspot.s3.amazonaws.com%2Fe5%2F0e%2F2ce6fc38429ba3c98e9263ec2942%2Fdr-shafali-jeste.jpg 1600w\" data-template=\"https:\/\/npr.brightspotcdn.com\/dims3\/default\/strip\/false\/crop\/2400x2400+0+212\/resize\/{width}\/quality\/{quality}\/format\/{format}\/?url=http%3A%2F%2Fnpr-brightspot.s3.amazonaws.com%2Fe5%2F0e%2F2ce6fc38429ba3c98e9263ec2942%2Fdr-shafali-jeste.jpg\" sizes=\"(min-width: 1350px) 298px, (min-width: 1025px) calc(((100vw - 365px)\/3) - 30px), (min-width: 768px) calc(((100vw - 30px)\/3) - 30px), calc(100vw - 30px)\" class=\"img\" type=\"image\/jpeg\"\/><img decoding=\"async\" src=\"https:\/\/npr.brightspotcdn.com\/dims3\/default\/strip\/false\/crop\/2400x2400+0+212\/resize\/1100\/quality\/50\/format\/jpeg\/?url=http%3A%2F%2Fnpr-brightspot.s3.amazonaws.com%2Fe5%2F0e%2F2ce6fc38429ba3c98e9263ec2942%2Fdr-shafali-jeste.jpg\" data-template=\"https:\/\/npr.brightspotcdn.com\/dims3\/default\/strip\/false\/crop\/2400x2400+0+212\/resize\/{width}\/quality\/{quality}\/format\/{format}\/?url=http%3A%2F%2Fnpr-brightspot.s3.amazonaws.com%2Fe5%2F0e%2F2ce6fc38429ba3c98e9263ec2942%2Fdr-shafali-jeste.jpg\" class=\"img\" alt=\"Dr. Shafali Jeste\" loading=\"lazy\"\/>\n        <\/picture>\n<\/div>\n<div class=\"credit-caption\">\n<div class=\"caption-wrap\">\n<div class=\"caption\" aria-label=\"Image caption\">\n<p>\n                Dr. Shafali Jeste<br \/>\n                <b class=\"credit\" aria-label=\"Image credit\"><\/p>\n<p>                    Alex Beattie<\/p>\n<p>                <\/b><br \/>\n                <b class=\"hide-caption\"><b>hide caption<\/b><\/b>\n            <\/p>\n<\/p><\/div>\n<p>            <b class=\"toggle-caption\"><b>toggle caption<\/b><\/b>\n    <\/div>\n<p>    <span class=\"credit\" aria-label=\"Image credit\"><\/p>\n<p>        Alex Beattie<\/p>\n<p>    <\/span>\n<\/div><\/div>\n<p>In fact, last week the administration walked back its earlier claim that the drug could treat autism, expanding approval only for a subset of patients with cerebral folate deficiency \u2014 those with <em>FOLR1<\/em>-related cerebral folate transport deficiency, an extremely rare condition with fewer than 50 cases <a href=\"https:\/\/www.ncbi.nlm.nih.gov\/books\/NBK599286\/\" target=\"_blank\" rel=\"noopener\">identified<\/a> worldwide.<\/p>\n<p>&#8220;Right now we don&#8217;t have sufficient data to say that we could establish efficacy for autism more broadly,&#8221; a senior FDA official said in a briefing. &#8220;It&#8217;ll be up to patients to talk with their physicians to see if that might be right for them.&#8221;<\/p>\n<aside id=\"ad-secondary-wrap\" class=\"ad-wrap secondary\" aria-label=\"advertisement\">\n<\/aside>\n<div id=\"resnx-s1-5742676-101\" class=\"bucketwrap internallink insettwocolumn inset2col \">\n<div class=\"bucket img\">\n                  <a class=\"imagewrap\" id=\"featuredStackSquareImagenx-s1-5550153\" href=\"https:\/\/www.npr.org\/sections\/shots-health-news\/2025\/09\/22\/nx-s1-5550153\/trump-rfk-autism-tylenol-leucovorin-pregnancy\" data-metrics-ga4=\"{&quot;category&quot;:&quot;recirculation&quot;,&quot;action&quot;:&quot;story_recirculation_click&quot;,&quot;clickType&quot;:&quot;inset box&quot;,&quot;clickUrl&quot;:&quot;https:\\\/\\\/www.npr.org\\\/sections\\\/shots-health-news\\\/2025\\\/09\\\/22\\\/nx-s1-5550153\\\/trump-rfk-autism-tylenol-leucovorin-pregnancy&quot;}\" target=\"_blank\" rel=\"noopener\"><picture><source srcset=\"https:\/\/npr.brightspotcdn.com\/dims3\/default\/strip\/false\/crop\/678x678+174+0\/resize\/100\/quality\/85\/format\/jpeg\/?url=http%3A%2F%2Fnpr-brightspot.s3.amazonaws.com%2F1b%2Fc6%2F372cb4a34ddc9c008189a3f0f42c%2Fgettyimages-2236812064.jpg\" data-original=\"https:\/\/npr.brightspotcdn.com\/dims3\/default\/strip\/false\/crop\/678x678+174+0\/resize\/100\/quality\/100\/format\/jpeg\/?url=http%3A%2F%2Fnpr-brightspot.s3.amazonaws.com%2F1b%2Fc6%2F372cb4a34ddc9c008189a3f0f42c%2Fgettyimages-2236812064.jpg\" data-template=\"https:\/\/npr.brightspotcdn.com\/dims3\/default\/strip\/false\/crop\/678x678+174+0\/resize\/{width}\/quality\/{quality}\/format\/{format}\/?url=http%3A%2F%2Fnpr-brightspot.s3.amazonaws.com%2F1b%2Fc6%2F372cb4a34ddc9c008189a3f0f42c%2Fgettyimages-2236812064.jpg\" data-format=\"webp\" class=\"img lazyOnLoad\" type=\"image\/webp\"\/><source srcset=\"https:\/\/npr.brightspotcdn.com\/dims3\/default\/strip\/false\/crop\/678x678+174+0\/resize\/100\/quality\/85\/format\/jpeg\/?url=http%3A%2F%2Fnpr-brightspot.s3.amazonaws.com%2F1b%2Fc6%2F372cb4a34ddc9c008189a3f0f42c%2Fgettyimages-2236812064.jpg\" data-original=\"https:\/\/npr.brightspotcdn.com\/dims3\/default\/strip\/false\/crop\/678x678+174+0\/resize\/100\/quality\/100\/format\/jpeg\/?url=http%3A%2F%2Fnpr-brightspot.s3.amazonaws.com%2F1b%2Fc6%2F372cb4a34ddc9c008189a3f0f42c%2Fgettyimages-2236812064.jpg\" data-template=\"https:\/\/npr.brightspotcdn.com\/dims3\/default\/strip\/false\/crop\/678x678+174+0\/resize\/{width}\/quality\/{quality}\/format\/{format}\/?url=http%3A%2F%2Fnpr-brightspot.s3.amazonaws.com%2F1b%2Fc6%2F372cb4a34ddc9c008189a3f0f42c%2Fgettyimages-2236812064.jpg\" data-format=\"jpeg\" class=\"img lazyOnLoad\" type=\"image\/jpeg\"\/><img decoding=\"async\" src=\"https:\/\/npr.brightspotcdn.com\/dims3\/default\/strip\/false\/crop\/678x678+174+0\/resize\/100\/quality\/85\/format\/jpeg\/?url=http%3A%2F%2Fnpr-brightspot.s3.amazonaws.com%2F1b%2Fc6%2F372cb4a34ddc9c008189a3f0f42c%2Fgettyimages-2236812064.jpg\" data-original=\"https:\/\/npr.brightspotcdn.com\/dims3\/default\/strip\/false\/crop\/678x678+174+0\/resize\/100\/quality\/100\/format\/jpeg\/?url=http%3A%2F%2Fnpr-brightspot.s3.amazonaws.com%2F1b%2Fc6%2F372cb4a34ddc9c008189a3f0f42c%2Fgettyimages-2236812064.jpg\" data-template=\"https:\/\/npr.brightspotcdn.com\/dims3\/default\/strip\/false\/crop\/678x678+174+0\/resize\/{width}\/quality\/{quality}\/format\/{format}\/?url=http%3A%2F%2Fnpr-brightspot.s3.amazonaws.com%2F1b%2Fc6%2F372cb4a34ddc9c008189a3f0f42c%2Fgettyimages-2236812064.jpg\" data-format=\"jpeg\" class=\"img lazyOnLoad\" alt=\"President Trump stands at the microphone at the White House in front of a shelf of books.\" loading=\"lazy\"\/><\/picture><\/a>         <\/p>\n<p><!-- END CLASS=\"BUCKETBLOCK\" -->\n      <\/div>\n<p><!-- END CLASS=\"BUCKET IMG\" -->\n   <\/div>\n<p><!-- END ID=\"RESNX-S1-5742676-101\" CLASS=\"BUCKETWRAP INTERNALLINK INSETTWOCOLUMN INSET2COL \" --><\/p>\n<p>It&#8217;s too early to tell if the new guidance will dampen interest in the drug among families of children with autism, but many doctors expect demand to persist.<\/p>\n<p>The damage to public perception has already been done, Jeste said, and it will take a &#8220;really long time&#8221; for enthusiasm around the drug to subside. Just on Monday, she saw nine patients. All but one family asked about the drug.<\/p>\n<h3 class=\"edTag\"><strong>Clamoring for a new cure<\/strong><\/h3>\n<p>After the initial press conference last fall, many parents came away with the impression that leucovorin was a proven treatment for autism, said <a href=\"https:\/\/health.ucdavis.edu\/neurology\/team\/43393\/frederick-bassal-pediatric-neurology-neurology---neuroimmunology-sacramento\" target=\"_blank\" rel=\"noopener\">Dr. Frederick Bassal<\/a>, a child neurologist at the University of California, Davis. Others assumed that a substantial proportion of children with autism have cerebral folate deficiency.<\/p>\n<p>This claim, <a href=\"https:\/\/www.npr.org\/sections\/shots-health-news\/2025\/09\/25\/nx-s1-5552751\/autism-leucovorin-folinic-acid-folate-vitamin-reality-check\" target=\"_blank\" rel=\"noopener\">based on<\/a> a <a href=\"https:\/\/doi.org\/10.1038\/mp.2011.175\" target=\"_blank\" rel=\"noopener\">small study<\/a>, isn&#8217;t backed by enough evidence, experts said. <a href=\"https:\/\/www.uclahealth.org\/providers\/alice-kuo\" target=\"_blank\" rel=\"noopener\">Dr. Alice Kuo<\/a>, a pediatrician at the University of California, Los Angeles, said the study was too small to conclude that a correlation exists.<\/p>\n<p>Still, demand for the drug spiked, fueled by online discussion and growing interest among parents. When her son&#8217;s pediatrician, who works at a big health system in Palo Alto, Calif., would not prescribe the drug, Balantrapu turned to Facebook.<\/p>\n<div id=\"resg-s1-113726\" class=\"bucketwrap image large\">\n<div class=\"imagewrap has-source-dimensions\" data-crop-type=\"\" style=\"&#10;        --source-width: 2989;&#10;        --source-height: 2668;&#10;    \">\n        <picture><source srcset=\"https:\/\/npr.brightspotcdn.com\/dims3\/default\/strip\/false\/crop\/2989x2668+0+0\/resize\/400\/quality\/85\/format\/webp\/?url=http%3A%2F%2Fnpr-brightspot.s3.amazonaws.com%2Fa1%2F48%2F24656cd94741b50a8b3fc8a68568%2Fkeith-joyce-and-jose-morales-ortiz.jpg 400w,&#10;https:\/\/npr.brightspotcdn.com\/dims3\/default\/strip\/false\/crop\/2989x2668+0+0\/resize\/600\/quality\/85\/format\/webp\/?url=http%3A%2F%2Fnpr-brightspot.s3.amazonaws.com%2Fa1%2F48%2F24656cd94741b50a8b3fc8a68568%2Fkeith-joyce-and-jose-morales-ortiz.jpg 600w,&#10;https:\/\/npr.brightspotcdn.com\/dims3\/default\/strip\/false\/crop\/2989x2668+0+0\/resize\/800\/quality\/85\/format\/webp\/?url=http%3A%2F%2Fnpr-brightspot.s3.amazonaws.com%2Fa1%2F48%2F24656cd94741b50a8b3fc8a68568%2Fkeith-joyce-and-jose-morales-ortiz.jpg 800w,&#10;https:\/\/npr.brightspotcdn.com\/dims3\/default\/strip\/false\/crop\/2989x2668+0+0\/resize\/900\/quality\/85\/format\/webp\/?url=http%3A%2F%2Fnpr-brightspot.s3.amazonaws.com%2Fa1%2F48%2F24656cd94741b50a8b3fc8a68568%2Fkeith-joyce-and-jose-morales-ortiz.jpg 900w,&#10;https:\/\/npr.brightspotcdn.com\/dims3\/default\/strip\/false\/crop\/2989x2668+0+0\/resize\/1200\/quality\/85\/format\/webp\/?url=http%3A%2F%2Fnpr-brightspot.s3.amazonaws.com%2Fa1%2F48%2F24656cd94741b50a8b3fc8a68568%2Fkeith-joyce-and-jose-morales-ortiz.jpg 1200w,&#10;https:\/\/npr.brightspotcdn.com\/dims3\/default\/strip\/false\/crop\/2989x2668+0+0\/resize\/1600\/quality\/85\/format\/webp\/?url=http%3A%2F%2Fnpr-brightspot.s3.amazonaws.com%2Fa1%2F48%2F24656cd94741b50a8b3fc8a68568%2Fkeith-joyce-and-jose-morales-ortiz.jpg 1600w,&#10;https:\/\/npr.brightspotcdn.com\/dims3\/default\/strip\/false\/crop\/2989x2668+0+0\/resize\/1800\/quality\/85\/format\/webp\/?url=http%3A%2F%2Fnpr-brightspot.s3.amazonaws.com%2Fa1%2F48%2F24656cd94741b50a8b3fc8a68568%2Fkeith-joyce-and-jose-morales-ortiz.jpg 1800w\" data-template=\"https:\/\/npr.brightspotcdn.com\/dims3\/default\/strip\/false\/crop\/2989x2668+0+0\/resize\/{width}\/quality\/{quality}\/format\/{format}\/?url=http%3A%2F%2Fnpr-brightspot.s3.amazonaws.com%2Fa1%2F48%2F24656cd94741b50a8b3fc8a68568%2Fkeith-joyce-and-jose-morales-ortiz.jpg\" sizes=\"(min-width: 1025px) 650px, calc(100vw - 30px)\" class=\"img\" type=\"image\/webp\"\/><source srcset=\"https:\/\/npr.brightspotcdn.com\/dims3\/default\/strip\/false\/crop\/2989x2668+0+0\/resize\/400\/quality\/85\/format\/jpeg\/?url=http%3A%2F%2Fnpr-brightspot.s3.amazonaws.com%2Fa1%2F48%2F24656cd94741b50a8b3fc8a68568%2Fkeith-joyce-and-jose-morales-ortiz.jpg 400w,&#10;https:\/\/npr.brightspotcdn.com\/dims3\/default\/strip\/false\/crop\/2989x2668+0+0\/resize\/600\/quality\/85\/format\/jpeg\/?url=http%3A%2F%2Fnpr-brightspot.s3.amazonaws.com%2Fa1%2F48%2F24656cd94741b50a8b3fc8a68568%2Fkeith-joyce-and-jose-morales-ortiz.jpg 600w,&#10;https:\/\/npr.brightspotcdn.com\/dims3\/default\/strip\/false\/crop\/2989x2668+0+0\/resize\/800\/quality\/85\/format\/jpeg\/?url=http%3A%2F%2Fnpr-brightspot.s3.amazonaws.com%2Fa1%2F48%2F24656cd94741b50a8b3fc8a68568%2Fkeith-joyce-and-jose-morales-ortiz.jpg 800w,&#10;https:\/\/npr.brightspotcdn.com\/dims3\/default\/strip\/false\/crop\/2989x2668+0+0\/resize\/900\/quality\/85\/format\/jpeg\/?url=http%3A%2F%2Fnpr-brightspot.s3.amazonaws.com%2Fa1%2F48%2F24656cd94741b50a8b3fc8a68568%2Fkeith-joyce-and-jose-morales-ortiz.jpg 900w,&#10;https:\/\/npr.brightspotcdn.com\/dims3\/default\/strip\/false\/crop\/2989x2668+0+0\/resize\/1200\/quality\/85\/format\/jpeg\/?url=http%3A%2F%2Fnpr-brightspot.s3.amazonaws.com%2Fa1%2F48%2F24656cd94741b50a8b3fc8a68568%2Fkeith-joyce-and-jose-morales-ortiz.jpg 1200w,&#10;https:\/\/npr.brightspotcdn.com\/dims3\/default\/strip\/false\/crop\/2989x2668+0+0\/resize\/1600\/quality\/85\/format\/jpeg\/?url=http%3A%2F%2Fnpr-brightspot.s3.amazonaws.com%2Fa1%2F48%2F24656cd94741b50a8b3fc8a68568%2Fkeith-joyce-and-jose-morales-ortiz.jpg 1600w,&#10;https:\/\/npr.brightspotcdn.com\/dims3\/default\/strip\/false\/crop\/2989x2668+0+0\/resize\/1800\/quality\/85\/format\/jpeg\/?url=http%3A%2F%2Fnpr-brightspot.s3.amazonaws.com%2Fa1%2F48%2F24656cd94741b50a8b3fc8a68568%2Fkeith-joyce-and-jose-morales-ortiz.jpg 1800w\" data-template=\"https:\/\/npr.brightspotcdn.com\/dims3\/default\/strip\/false\/crop\/2989x2668+0+0\/resize\/{width}\/quality\/{quality}\/format\/{format}\/?url=http%3A%2F%2Fnpr-brightspot.s3.amazonaws.com%2Fa1%2F48%2F24656cd94741b50a8b3fc8a68568%2Fkeith-joyce-and-jose-morales-ortiz.jpg\" sizes=\"(min-width: 1025px) 650px, calc(100vw - 30px)\" class=\"img\" type=\"image\/jpeg\"\/><img decoding=\"async\" src=\"https:\/\/npr.brightspotcdn.com\/dims3\/default\/strip\/false\/crop\/2989x2668+0+0\/resize\/1100\/quality\/50\/format\/jpeg\/?url=http%3A%2F%2Fnpr-brightspot.s3.amazonaws.com%2Fa1%2F48%2F24656cd94741b50a8b3fc8a68568%2Fkeith-joyce-and-jose-morales-ortiz.jpg\" data-template=\"https:\/\/npr.brightspotcdn.com\/dims3\/default\/strip\/false\/crop\/2989x2668+0+0\/resize\/{width}\/quality\/{quality}\/format\/{format}\/?url=http%3A%2F%2Fnpr-brightspot.s3.amazonaws.com%2Fa1%2F48%2F24656cd94741b50a8b3fc8a68568%2Fkeith-joyce-and-jose-morales-ortiz.jpg\" class=\"img\" alt=\"Keith Joyce with Jose Morales\" loading=\"lazy\"\/>\n        <\/picture>\n<\/div>\n<div class=\"credit-caption\">\n<div class=\"caption-wrap\">\n<div class=\"caption\" aria-label=\"Image caption\">\n<p>\n                Keith Joyce (left), who is raising a 5-year-old with autism, ran a Facebook group for parents interested in leucovorin as a treatment for their children with autism.<br \/>\n                <b class=\"credit\" aria-label=\"Image credit\"><\/p>\n<p>                    Joyce family<\/p>\n<p>                <\/b><br \/>\n                <b class=\"hide-caption\"><b>hide caption<\/b><\/b>\n            <\/p>\n<\/p><\/div>\n<p>            <b class=\"toggle-caption\"><b>toggle caption<\/b><\/b>\n    <\/div>\n<p>    <span class=\"credit\" aria-label=\"Image credit\"><\/p>\n<p>        Joyce family<\/p>\n<p>    <\/span>\n<\/div><\/div>\n<p>She wasn&#8217;t the only one. Around 80,000 other users joined a Facebook group moderated by Keith Joyce. (Facebook deleted the group in late October, writing that it had violated its community standards &#8220;multiple times.&#8221; Joyce attempted to build a similar community on Telegram.)<\/p>\n<p>Hundreds of posts poured in every day, said Joyce, 60. Most came from parents attempting to find a doctor who would prescribe leucovorin for their child. Many believe the drug could help nonverbal children begin to speak.<\/p>\n<p>Joyce himself cares for a 5-year-old with autism and said the child began speaking after starting the medication.<\/p>\n<p>&#8220;Parents were very frustrated,&#8221; Joyce recalled, likening the situation to opening Pandora&#8217;s box. &#8220;Many doctors were saying, &#8216;I&#8217;m not going to prescribe it simply because there&#8217;s not enough information.'&#8221;<\/p>\n<aside id=\"ad-third-wrap\" class=\"ad-wrap third\" aria-label=\"advertisement\">\n<\/aside>\n<p>Interest remains high. There are several other groups on social media, including a WhatsApp group with dozens of messages a day, sharing prescribers&#8217; names, queries and tips for how parents should administer the drug. In all, Joyce said many parents \u2014 even those who did receive a script from their doctor \u2014 are largely left to navigate treatment on their own.<\/p>\n<p>Prescriptions for leucovorin <a href=\"https:\/\/www.npr.org\/2026\/03\/05\/nx-s1-5732929\/tylenol-pregnant-women-autism-trump-warning\" target=\"_blank\" rel=\"noopener\">increased<\/a> by 71% in the last quarter of 2025, according to a paper <a href=\"https:\/\/doi.org\/10.1016\/S0140-6736(26)00243-6\" target=\"_blank\" rel=\"noopener\">published<\/a> this month. The rise in prescriptions shows &#8220;the apparent power that public authority figures have to drive sudden changes in health care practices,&#8221; the authors wrote, referring to the Trump administration press conference last fall.<\/p>\n<p>Joyce called last week&#8217;s announcement from the FDA limiting approval to a narrow subset of patients &#8220;maddening&#8221; and said it would now be &#8220;even more difficult&#8221; to get a prescription.<\/p>\n<div id=\"resnx-s1-5742676-102\" class=\"bucketwrap internallink insettwocolumn inset2col \">\n<div class=\"bucket img\">\n                  <a class=\"imagewrap\" id=\"featuredStackSquareImagenx-s1-5643014\" href=\"https:\/\/www.npr.org\/sections\/shots-health-news\/2025\/12\/23\/nx-s1-5643014\/autism-aba-therapy-medicaid-costs\" data-metrics-ga4=\"{&quot;category&quot;:&quot;recirculation&quot;,&quot;action&quot;:&quot;story_recirculation_click&quot;,&quot;clickType&quot;:&quot;inset box&quot;,&quot;clickUrl&quot;:&quot;https:\\\/\\\/www.npr.org\\\/sections\\\/shots-health-news\\\/2025\\\/12\\\/23\\\/nx-s1-5643014\\\/autism-aba-therapy-medicaid-costs&quot;}\" target=\"_blank\" rel=\"noopener\"><picture><source srcset=\"https:\/\/npr.brightspotcdn.com\/dims3\/default\/strip\/false\/crop\/5464x5464+1364+0\/resize\/100\/quality\/85\/format\/jpeg\/?url=http%3A%2F%2Fnpr-brightspot.s3.amazonaws.com%2Fa3%2F29%2F5b790bef404ab37300622d2b5383%2Fautism-medicaid-osborne-05.jpg\" data-original=\"https:\/\/npr.brightspotcdn.com\/dims3\/default\/strip\/false\/crop\/5464x5464+1364+0\/resize\/100\/quality\/100\/format\/jpeg\/?url=http%3A%2F%2Fnpr-brightspot.s3.amazonaws.com%2Fa3%2F29%2F5b790bef404ab37300622d2b5383%2Fautism-medicaid-osborne-05.jpg\" data-template=\"https:\/\/npr.brightspotcdn.com\/dims3\/default\/strip\/false\/crop\/5464x5464+1364+0\/resize\/{width}\/quality\/{quality}\/format\/{format}\/?url=http%3A%2F%2Fnpr-brightspot.s3.amazonaws.com%2Fa3%2F29%2F5b790bef404ab37300622d2b5383%2Fautism-medicaid-osborne-05.jpg\" data-format=\"webp\" class=\"img lazyOnLoad\" type=\"image\/webp\"\/><source srcset=\"https:\/\/npr.brightspotcdn.com\/dims3\/default\/strip\/false\/crop\/5464x5464+1364+0\/resize\/100\/quality\/85\/format\/jpeg\/?url=http%3A%2F%2Fnpr-brightspot.s3.amazonaws.com%2Fa3%2F29%2F5b790bef404ab37300622d2b5383%2Fautism-medicaid-osborne-05.jpg\" data-original=\"https:\/\/npr.brightspotcdn.com\/dims3\/default\/strip\/false\/crop\/5464x5464+1364+0\/resize\/100\/quality\/100\/format\/jpeg\/?url=http%3A%2F%2Fnpr-brightspot.s3.amazonaws.com%2Fa3%2F29%2F5b790bef404ab37300622d2b5383%2Fautism-medicaid-osborne-05.jpg\" data-template=\"https:\/\/npr.brightspotcdn.com\/dims3\/default\/strip\/false\/crop\/5464x5464+1364+0\/resize\/{width}\/quality\/{quality}\/format\/{format}\/?url=http%3A%2F%2Fnpr-brightspot.s3.amazonaws.com%2Fa3%2F29%2F5b790bef404ab37300622d2b5383%2Fautism-medicaid-osborne-05.jpg\" data-format=\"jpeg\" class=\"img lazyOnLoad\" type=\"image\/jpeg\"\/><img decoding=\"async\" src=\"https:\/\/npr.brightspotcdn.com\/dims3\/default\/strip\/false\/crop\/5464x5464+1364+0\/resize\/100\/quality\/85\/format\/jpeg\/?url=http%3A%2F%2Fnpr-brightspot.s3.amazonaws.com%2Fa3%2F29%2F5b790bef404ab37300622d2b5383%2Fautism-medicaid-osborne-05.jpg\" data-original=\"https:\/\/npr.brightspotcdn.com\/dims3\/default\/strip\/false\/crop\/5464x5464+1364+0\/resize\/100\/quality\/100\/format\/jpeg\/?url=http%3A%2F%2Fnpr-brightspot.s3.amazonaws.com%2Fa3%2F29%2F5b790bef404ab37300622d2b5383%2Fautism-medicaid-osborne-05.jpg\" data-template=\"https:\/\/npr.brightspotcdn.com\/dims3\/default\/strip\/false\/crop\/5464x5464+1364+0\/resize\/{width}\/quality\/{quality}\/format\/{format}\/?url=http%3A%2F%2Fnpr-brightspot.s3.amazonaws.com%2Fa3%2F29%2F5b790bef404ab37300622d2b5383%2Fautism-medicaid-osborne-05.jpg\" data-format=\"jpeg\" class=\"img lazyOnLoad\" alt=\"Just months ago, Gaile Osborne (left) didn\u2019t expect her adoptive 3-year-old daughter, Aubreigh, would make friends at school. Aubreigh was diagnosed with autism at 14 months old. After struggling to control outbursts and sometimes hurting herself, she started a therapy program called applied behavior analysis. \u201cIt\u2019s not perfect,\u201d Osborne says. \u201cBut the growth in under a year is just unreal.\u201d\" loading=\"lazy\"\/><\/picture><\/a>         <\/p>\n<p><!-- END CLASS=\"BUCKETBLOCK\" -->\n      <\/div>\n<p><!-- END CLASS=\"BUCKET IMG\" -->\n   <\/div>\n<p><!-- END ID=\"RESNX-S1-5742676-102\" CLASS=\"BUCKETWRAP INTERNALLINK INSETTWOCOLUMN INSET2COL \" --><\/p>\n<p>&#8220;It actually makes me angry,&#8221; Joyce said. Joyce has done multiple interviews with the press about the 5-year-old&#8217;s story. &#8220;I put him out there and all this to promote the effect. Now they are basically saying the opposite.&#8221;<\/p>\n<h3 class=\"edTag\"><strong>Mainstream medicine&#8217;s reaction<\/strong><\/h3>\n<p>Many doctors struggle with what to do about the demand for a drug once far outside the orbit of autism care, says <a href=\"https:\/\/www.uofmhealth.org\/profile\/1669508685\/sarah-shaheen-mohiuddin\" target=\"_blank\" rel=\"noopener\">Dr. Sarah Mohiuddin<\/a>, who directs the Multidisciplinary Autism Program at Michigan Medicine.<\/p>\n<p>Uncertainty has lingered after last fall&#8217;s announcement, even after major medical associations like the <a href=\"https:\/\/www.aap.org\/en\/patient-care\/autism\/use-of-leucovorin-in-autistic-pediatric-patients\/\" target=\"_blank\" rel=\"noopener\">American Academy of Pediatrics<\/a> and the <a href=\"https:\/\/www.coalitionofautismscientists.org\/perspectives\" target=\"_blank\" rel=\"noopener\">Coalition of Autism Scientists<\/a> said they do not recommend the drug for autism, citing insufficient evidence to support its use.<\/p>\n<p>Most health systems issued similar guidance. Others like Kaiser Permanente and Oregon Health and Science University have stated that their providers will not <a href=\"https:\/\/mydoctor.kaiserpermanente.org\/ncal\/article\/acetaminophen-tylenol-autism-pregnancy-and-leucovorin-faqs-2838047\" target=\"_blank\" rel=\"noopener\">prescribe<\/a> the drug until more research is done on its safety and effectiveness.<\/p>\n<p>Leucovorin is generally <a href=\"https:\/\/www.aboutkidshealth.ca\/zh-Hans\/drugaz\/leucovorin\/\" target=\"_blank\" rel=\"noopener\">considered<\/a> a safe medication. And Mohiuddin said if patients use it briefly, it &#8220;most likely&#8221; won&#8217;t cause harm. But the drug&#8217;s safety profile <a href=\"https:\/\/www.dropbox.com\/scl\/fi\/a98ozdv7ablrmurrsx44w\/Leucovorin-prescribing.pdf?rlkey=m08v2w29sx2tgv0r8ce4u84e1&amp;e=1&amp;st=30uajpjm&amp;dl=0\" target=\"_blank\" rel=\"noopener\">hasn&#8217;t been<\/a> established in children with autism. And <a href=\"https:\/\/www.dropbox.com\/scl\/fi\/dkzvmp0t6bwo5zvf7b2be\/Leucovorin-ASD-Research.pdf?rlkey=xl43bccydxo8zu4uik4azvk8o&amp;e=1&amp;st=es5pzhwx&amp;dl=0\" target=\"_blank\" rel=\"noopener\">no data exists<\/a> on long-term use of the drug for longer than six months in that patient population, Mohiuddin noted.<\/p>\n<aside id=\"ad-overflow-1-wrap\" class=\"ad-wrap overflow-1\" aria-label=\"advertisement\">\n<\/aside>\n<p>Dosing is a mystery as well. Those who prescribe the drug typically follow a protocol <a href=\"https:\/\/doi.org\/10.1038\/mp.2011.175\" target=\"_blank\" rel=\"noopener\">created<\/a> in 2013 \u2014 which has been replicated by only a handful of studies \u2014 and can be up to <a href=\"https:\/\/www.nejm.org\/doi\/full\/10.1056\/NEJMp2516268\" target=\"_blank\" rel=\"noopener\">100 times higher<\/a> than the minimum recommended daily intake of folate, a derivative of leucovorin&#8217;s active ingredient. Current formulations of the drug also <a href=\"https:\/\/www.nejm.org\/doi\/full\/10.1056\/NEJMp2516268\" target=\"_blank\" rel=\"noopener\">persist<\/a> in the bloodstream for long periods, which can have unintended consequences.<\/p>\n<p>The two double-blinded, placebo-controlled trials that tested the drug in kids with autism didn&#8217;t test it as a <a href=\"https:\/\/www.dropbox.com\/scl\/fi\/a98ozdv7ablrmurrsx44w\/Leucovorin-prescribing.pdf?rlkey=m08v2w29sx2tgv0r8ce4u84e1&amp;e=1&amp;st=30uajpjm&amp;dl=0\" target=\"_blank\" rel=\"noopener\">standalone<\/a> treatment either, Mohiuddin said. That means ABA therapy and other early intervention treatments remain important.<\/p>\n<p><a href=\"https:\/\/www.dropbox.com\/scl\/fi\/dkzvmp0t6bwo5zvf7b2be\/Leucovorin-ASD-Research.pdf?rlkey=xl43bccydxo8zu4uik4azvk8o&amp;e=2&amp;st=es5pzhwx&amp;dl=0\" target=\"_blank\" rel=\"noopener\">One of those<\/a> studies was <a href=\"https:\/\/www.thetransmitter.org\/spectrum\/largest-leucovorin-autism-trial-retracted\/\" target=\"_blank\" rel=\"noopener\">retracted<\/a> by the <em>European Journal of Pediatrics<\/em> on Jan. 29 <a href=\"https:\/\/link.springer.com\/article\/10.1007\/s00431-026-06769-x\" target=\"_blank\" rel=\"noopener\">because<\/a> of &#8220;errors in the results&#8221; and &#8220;concerns with the statistical analyses performed.&#8221; Only two of the six authors responded to and agreed with the journal&#8217;s retraction.<\/p>\n<p>Still, despite concerns with the research, the Trump administration appointed at least one doctor who regularly prescribes it to the <a href=\"https:\/\/iacc.hhs.gov\/about-iacc\/members\/bios\/#Daniel-Rossignol\" target=\"_blank\" rel=\"noopener\">federal autism advisory board<\/a>. Another new member <a href=\"https:\/\/www.facebook.com\/share\/1GavYfcKbw\/\" target=\"_blank\" rel=\"noopener\">referred<\/a> to a physician who prescribes the drug as one of her &#8220;favorite&#8221; specialists.<\/p>\n<p>UCLA&#8217;s Jeste said attention on the drug has created a rift between doctors and patients. But she argues that prescribing the drug simply because parents are clamoring for it would set a slippery precedent.<\/p>\n<p>&#8220;If we say &#8216;yes&#8217; to leucovorin because this is what&#8217;s received the most attention from our government and from media, then we may as well say &#8216;yes&#8217; to other treatments that have been poorly studied,&#8221; Jeste said.<\/p>\n<p>Nonetheless, some doctors at large health systems are prescribing the drug selectively. Most declined to speak with NPR, fearing backlash from colleagues who may view them as prioritizing patient satisfaction over evidence. <a href=\"https:\/\/med.stanford.edu\/profiles\/antonio-hardan\" target=\"_blank\" rel=\"noopener\">Dr. Antonio Hardan<\/a>, a child psychiatrist at Stanford Medicine, and Mohiuddin said some of their colleagues have prescribed the medication in unique clinical scenarios.<\/p>\n<aside id=\"ad-overflow-2-wrap\" class=\"ad-wrap overflow-2\" aria-label=\"advertisement\">\n<\/aside>\n<p>Another concern raised by experts is the unintended consequences of prescribing the medication, which is <a href=\"https:\/\/dailymed.nlm.nih.gov\/dailymed\/drugInfo.cfm?setid=344f65ac-9f04-49d7-b7c3-4ba19bd7b429\" target=\"_blank\" rel=\"noopener\">commonly used<\/a> during cancer treatment. Beyond safety risks, oncologists like <a href=\"https:\/\/med.stanford.edu\/profiles\/amer-karam\" target=\"_blank\" rel=\"noopener\">Dr. Amer Karam<\/a>, who practices at Stanford Medicine, worry that the growing demand for its use in autism could result in shortages for cancer patients who rely on it.<\/p>\n<p>On Jan. 12, the FDA <a href=\"https:\/\/endpoints.news\/at-fdas-request-pfizer-helps-ease-shortage-of-potential-autism-drug\/\" target=\"_blank\" rel=\"noopener\">announced<\/a> it was <a href=\"https:\/\/www.fda.gov\/media\/190268\/download?attachment\" target=\"_blank\" rel=\"noopener\">moving<\/a> to address a &#8220;shortfall&#8221; of the drug&#8217;s oral form by allowing imports of a version sold in Canada. The American Society of Health-System Pharmacists reported the medication has been in shortage <a href=\"https:\/\/www.ashp.org\/Drug-Shortages\/Current-Shortages\/Drug-Shortage-Detail.aspx?id=1189\" target=\"_blank\" rel=\"noopener\">since<\/a> November.<\/p>\n<p>Joyce, the guardian of the 5-year-old boy, has struggled to find a steady supply of the drug since December, bouncing between two pharmacies to fill the prescription.<\/p>\n<p>Researchers <a href=\"https:\/\/www.nejm.org\/doi\/full\/10.1056\/NEJMp2516268\" target=\"_blank\" rel=\"noopener\">warn<\/a> that shortages are a &#8220;recurring&#8221; problem and rising demand could drive up prices. <\/p>\n<h3 class=\"edTag\"><strong>Some providers say yes to leucovorin<\/strong><\/h3>\n<p>While many doctors at major health centers won&#8217;t prescribe it, some parents have found physicians \u2014 often in private practice \u2014 who will. <\/p>\n<p>Many of these providers advertise their services online. That&#8217;s how Balantrapu found one of them: Dr. Richard Frye.<\/p>\n<div id=\"resg-s1-113730\" class=\"bucketwrap image medium\">\n<div class=\"imagewrap has-source-dimensions\" data-crop-type=\"\" style=\"&#10;        --source-width: 600;&#10;        --source-height: 600;&#10;    \">\n        <picture><source srcset=\"https:\/\/npr.brightspotcdn.com\/dims3\/default\/strip\/false\/crop\/600x600+0+0\/resize\/200\/quality\/85\/format\/webp\/?url=http%3A%2F%2Fnpr-brightspot.s3.amazonaws.com%2F97%2Fc2%2F2657cec84e37b81095401ccb7c85%2Frichard-frye.jpg 200w,&#10;https:\/\/npr.brightspotcdn.com\/dims3\/default\/strip\/false\/crop\/600x600+0+0\/resize\/300\/quality\/85\/format\/webp\/?url=http%3A%2F%2Fnpr-brightspot.s3.amazonaws.com%2F97%2Fc2%2F2657cec84e37b81095401ccb7c85%2Frichard-frye.jpg 300w,&#10;https:\/\/npr.brightspotcdn.com\/dims3\/default\/strip\/false\/crop\/600x600+0+0\/resize\/400\/quality\/85\/format\/webp\/?url=http%3A%2F%2Fnpr-brightspot.s3.amazonaws.com%2F97%2Fc2%2F2657cec84e37b81095401ccb7c85%2Frichard-frye.jpg 400w,&#10;https:\/\/npr.brightspotcdn.com\/dims3\/default\/strip\/false\/crop\/600x600+0+0\/resize\/600\/quality\/85\/format\/webp\/?url=http%3A%2F%2Fnpr-brightspot.s3.amazonaws.com%2F97%2Fc2%2F2657cec84e37b81095401ccb7c85%2Frichard-frye.jpg 600w,&#10;https:\/\/npr.brightspotcdn.com\/dims3\/default\/strip\/false\/crop\/600x600+0+0\/resize\/800\/quality\/85\/format\/webp\/?url=http%3A%2F%2Fnpr-brightspot.s3.amazonaws.com%2F97%2Fc2%2F2657cec84e37b81095401ccb7c85%2Frichard-frye.jpg 800w,&#10;https:\/\/npr.brightspotcdn.com\/dims3\/default\/strip\/false\/crop\/600x600+0+0\/resize\/1200\/quality\/85\/format\/webp\/?url=http%3A%2F%2Fnpr-brightspot.s3.amazonaws.com%2F97%2Fc2%2F2657cec84e37b81095401ccb7c85%2Frichard-frye.jpg 1200w,&#10;https:\/\/npr.brightspotcdn.com\/dims3\/default\/strip\/false\/crop\/600x600+0+0\/resize\/1600\/quality\/85\/format\/webp\/?url=http%3A%2F%2Fnpr-brightspot.s3.amazonaws.com%2F97%2Fc2%2F2657cec84e37b81095401ccb7c85%2Frichard-frye.jpg 1600w\" data-template=\"https:\/\/npr.brightspotcdn.com\/dims3\/default\/strip\/false\/crop\/600x600+0+0\/resize\/{width}\/quality\/{quality}\/format\/{format}\/?url=http%3A%2F%2Fnpr-brightspot.s3.amazonaws.com%2F97%2Fc2%2F2657cec84e37b81095401ccb7c85%2Frichard-frye.jpg\" sizes=\"(min-width: 1350px) 298px, (min-width: 1025px) calc(((100vw - 365px)\/3) - 30px), (min-width: 768px) calc(((100vw - 30px)\/3) - 30px), calc(100vw - 30px)\" class=\"img\" type=\"image\/webp\"\/><source srcset=\"https:\/\/npr.brightspotcdn.com\/dims3\/default\/strip\/false\/crop\/600x600+0+0\/resize\/200\/quality\/85\/format\/jpeg\/?url=http%3A%2F%2Fnpr-brightspot.s3.amazonaws.com%2F97%2Fc2%2F2657cec84e37b81095401ccb7c85%2Frichard-frye.jpg 200w,&#10;https:\/\/npr.brightspotcdn.com\/dims3\/default\/strip\/false\/crop\/600x600+0+0\/resize\/300\/quality\/85\/format\/jpeg\/?url=http%3A%2F%2Fnpr-brightspot.s3.amazonaws.com%2F97%2Fc2%2F2657cec84e37b81095401ccb7c85%2Frichard-frye.jpg 300w,&#10;https:\/\/npr.brightspotcdn.com\/dims3\/default\/strip\/false\/crop\/600x600+0+0\/resize\/400\/quality\/85\/format\/jpeg\/?url=http%3A%2F%2Fnpr-brightspot.s3.amazonaws.com%2F97%2Fc2%2F2657cec84e37b81095401ccb7c85%2Frichard-frye.jpg 400w,&#10;https:\/\/npr.brightspotcdn.com\/dims3\/default\/strip\/false\/crop\/600x600+0+0\/resize\/600\/quality\/85\/format\/jpeg\/?url=http%3A%2F%2Fnpr-brightspot.s3.amazonaws.com%2F97%2Fc2%2F2657cec84e37b81095401ccb7c85%2Frichard-frye.jpg 600w,&#10;https:\/\/npr.brightspotcdn.com\/dims3\/default\/strip\/false\/crop\/600x600+0+0\/resize\/800\/quality\/85\/format\/jpeg\/?url=http%3A%2F%2Fnpr-brightspot.s3.amazonaws.com%2F97%2Fc2%2F2657cec84e37b81095401ccb7c85%2Frichard-frye.jpg 800w,&#10;https:\/\/npr.brightspotcdn.com\/dims3\/default\/strip\/false\/crop\/600x600+0+0\/resize\/1200\/quality\/85\/format\/jpeg\/?url=http%3A%2F%2Fnpr-brightspot.s3.amazonaws.com%2F97%2Fc2%2F2657cec84e37b81095401ccb7c85%2Frichard-frye.jpg 1200w,&#10;https:\/\/npr.brightspotcdn.com\/dims3\/default\/strip\/false\/crop\/600x600+0+0\/resize\/1600\/quality\/85\/format\/jpeg\/?url=http%3A%2F%2Fnpr-brightspot.s3.amazonaws.com%2F97%2Fc2%2F2657cec84e37b81095401ccb7c85%2Frichard-frye.jpg 1600w\" data-template=\"https:\/\/npr.brightspotcdn.com\/dims3\/default\/strip\/false\/crop\/600x600+0+0\/resize\/{width}\/quality\/{quality}\/format\/{format}\/?url=http%3A%2F%2Fnpr-brightspot.s3.amazonaws.com%2F97%2Fc2%2F2657cec84e37b81095401ccb7c85%2Frichard-frye.jpg\" sizes=\"(min-width: 1350px) 298px, (min-width: 1025px) calc(((100vw - 365px)\/3) - 30px), (min-width: 768px) calc(((100vw - 30px)\/3) - 30px), calc(100vw - 30px)\" class=\"img\" type=\"image\/jpeg\"\/><img decoding=\"async\" src=\"https:\/\/npr.brightspotcdn.com\/dims3\/default\/strip\/false\/crop\/600x600+0+0\/resize\/1100\/quality\/50\/format\/jpeg\/?url=http%3A%2F%2Fnpr-brightspot.s3.amazonaws.com%2F97%2Fc2%2F2657cec84e37b81095401ccb7c85%2Frichard-frye.jpg\" data-template=\"https:\/\/npr.brightspotcdn.com\/dims3\/default\/strip\/false\/crop\/600x600+0+0\/resize\/{width}\/quality\/{quality}\/format\/{format}\/?url=http%3A%2F%2Fnpr-brightspot.s3.amazonaws.com%2F97%2Fc2%2F2657cec84e37b81095401ccb7c85%2Frichard-frye.jpg\" class=\"img\" alt=\"Dr. Richard Frye\" loading=\"lazy\"\/>\n        <\/picture>\n<\/div>\n<div class=\"credit-caption\">\n<div class=\"caption-wrap\">\n<div class=\"caption\" aria-label=\"Image caption\">\n<p>\n                Dr. Richard Frye<br \/>\n                <b class=\"credit\" aria-label=\"Image credit\"><\/p>\n<p>                    Richard Frye<\/p>\n<p>                <\/b><br \/>\n                <b class=\"hide-caption\"><b>hide caption<\/b><\/b>\n            <\/p>\n<\/p><\/div>\n<p>            <b class=\"toggle-caption\"><b>toggle caption<\/b><\/b>\n    <\/div>\n<p>    <span class=\"credit\" aria-label=\"Image credit\"><\/p>\n<p>        Richard Frye<\/p>\n<p>    <\/span>\n<\/div><\/div>\n<p>Frye is a vocal proponent of leucovorin, and his research on the drug was cited by federal health officials in September. His interest in leucovorin is <a href=\"https:\/\/www.thetransmitter.org\/spectrum\/exclusive-who-is-richard-frye-the-neurologist-who-researches-and-advocates-for-leucovorin-as-an-autism-treatment\/\" target=\"_blank\" rel=\"noopener\">linked<\/a> to the unproven theory that autism stems from mitochondrial dysfunction, which is intensified by vaccines. He has publicly <a href=\"https:\/\/www.thetransmitter.org\/spectrum\/exclusive-who-is-richard-frye-the-neurologist-who-researches-and-advocates-for-leucovorin-as-an-autism-treatment\/\" target=\"_blank\" rel=\"noopener\">expressed<\/a> skepticism about vaccines.<\/p>\n<p>Frye practiced in large academic centers until he left when they <a href=\"https:\/\/www.npr.org\/2026\/01\/19\/nx-s1-5560775\/a-once-obscure-cancer-drug-has-become-a-celebrity-in-the-autism-community\" target=\"_blank\" rel=\"noopener\">questioned<\/a> his research.<\/p>\n<p>He now works in private practice at Rossignol Medical Center and estimates about 80% of his autism patients get a prescription for leucovorin. He said he believes in the treatment and is puzzled by mainstream medicine&#8217;s skepticism of it.<\/p>\n<p>&#8220;Refusing to acknowledge [the benefits of leucovorin] and refusing to at least try it is really very confusing to me,&#8221; Frye said. &#8220;I&#8217;m all about trying to improve the lives of children in a safe manner with safe treatments.&#8221;<\/p>\n<aside id=\"ad-overflow-3-wrap\" class=\"ad-wrap overflow-3\" aria-label=\"advertisement\">\n<\/aside>\n<p>Frye founded a pharmaceutical company last year that he said will produce a new formulation of leucovorin. He <a href=\"https:\/\/www.sec.gov\/Archives\/edgar\/data\/2106811\/000210681126000001\/xslFormDX01\/primary_doc.xml\" target=\"_blank\" rel=\"noopener\">filed<\/a> with the Securities and Exchange Commission on Jan. 22, disclosing he had raised $100,000 from one investor. In a statement, Frye called the FDA&#8217;s narrow expansion of the drug&#8217;s use last week &#8220;meaningful&#8221; and of &#8220;extreme interest,&#8221; writing that he is hopeful leucovorin approval will eventually be expanded beyond that.<\/p>\n<p>Tiffany Banks, a naturopathic doctor and nurse practitioner with a hybrid practice in Kentucky, is another provider who openly prescribes the drug. She estimated that about 95% of her patients who seek a leucovorin prescription have received one since she began offering it in June. Calls to Banks&#8217; clinic have more than doubled in volume, and she now works longer hours and weekends.<\/p>\n<p>&#8220;I just want to help everybody,&#8221; Banks said. &#8220;When a mom sends you an email stating, &#8216;My nonverbal child told me &#8220;I love you&#8221; for the first time,&#8217; that&#8217;s pretty special.&#8221;<\/p>\n<div id=\"resg-s1-113731\" class=\"bucketwrap image medium\">\n<div class=\"imagewrap has-source-dimensions\" data-crop-type=\"\" style=\"&#10;        --source-width: 3024;&#10;        --source-height: 3024;&#10;    \">\n        <picture><source srcset=\"https:\/\/npr.brightspotcdn.com\/dims3\/default\/strip\/false\/crop\/3024x3024+0+0\/resize\/200\/quality\/85\/format\/webp\/?url=http%3A%2F%2Fnpr-brightspot.s3.amazonaws.com%2Fa0%2Fab%2F7d4d340d4a50835a5a1012aa8cda%2Fjaynalee-banks-and-tiffany-banks.png 200w,&#10;https:\/\/npr.brightspotcdn.com\/dims3\/default\/strip\/false\/crop\/3024x3024+0+0\/resize\/300\/quality\/85\/format\/webp\/?url=http%3A%2F%2Fnpr-brightspot.s3.amazonaws.com%2Fa0%2Fab%2F7d4d340d4a50835a5a1012aa8cda%2Fjaynalee-banks-and-tiffany-banks.png 300w,&#10;https:\/\/npr.brightspotcdn.com\/dims3\/default\/strip\/false\/crop\/3024x3024+0+0\/resize\/400\/quality\/85\/format\/webp\/?url=http%3A%2F%2Fnpr-brightspot.s3.amazonaws.com%2Fa0%2Fab%2F7d4d340d4a50835a5a1012aa8cda%2Fjaynalee-banks-and-tiffany-banks.png 400w,&#10;https:\/\/npr.brightspotcdn.com\/dims3\/default\/strip\/false\/crop\/3024x3024+0+0\/resize\/600\/quality\/85\/format\/webp\/?url=http%3A%2F%2Fnpr-brightspot.s3.amazonaws.com%2Fa0%2Fab%2F7d4d340d4a50835a5a1012aa8cda%2Fjaynalee-banks-and-tiffany-banks.png 600w,&#10;https:\/\/npr.brightspotcdn.com\/dims3\/default\/strip\/false\/crop\/3024x3024+0+0\/resize\/800\/quality\/85\/format\/webp\/?url=http%3A%2F%2Fnpr-brightspot.s3.amazonaws.com%2Fa0%2Fab%2F7d4d340d4a50835a5a1012aa8cda%2Fjaynalee-banks-and-tiffany-banks.png 800w,&#10;https:\/\/npr.brightspotcdn.com\/dims3\/default\/strip\/false\/crop\/3024x3024+0+0\/resize\/1200\/quality\/85\/format\/webp\/?url=http%3A%2F%2Fnpr-brightspot.s3.amazonaws.com%2Fa0%2Fab%2F7d4d340d4a50835a5a1012aa8cda%2Fjaynalee-banks-and-tiffany-banks.png 1200w,&#10;https:\/\/npr.brightspotcdn.com\/dims3\/default\/strip\/false\/crop\/3024x3024+0+0\/resize\/1600\/quality\/85\/format\/webp\/?url=http%3A%2F%2Fnpr-brightspot.s3.amazonaws.com%2Fa0%2Fab%2F7d4d340d4a50835a5a1012aa8cda%2Fjaynalee-banks-and-tiffany-banks.png 1600w\" data-template=\"https:\/\/npr.brightspotcdn.com\/dims3\/default\/strip\/false\/crop\/3024x3024+0+0\/resize\/{width}\/quality\/{quality}\/format\/{format}\/?url=http%3A%2F%2Fnpr-brightspot.s3.amazonaws.com%2Fa0%2Fab%2F7d4d340d4a50835a5a1012aa8cda%2Fjaynalee-banks-and-tiffany-banks.png\" sizes=\"(min-width: 1350px) 298px, (min-width: 1025px) calc(((100vw - 365px)\/3) - 30px), (min-width: 768px) calc(((100vw - 30px)\/3) - 30px), calc(100vw - 30px)\" class=\"img\" type=\"image\/webp\"\/><source srcset=\"https:\/\/npr.brightspotcdn.com\/dims3\/default\/strip\/false\/crop\/3024x3024+0+0\/resize\/200\/quality\/85\/format\/png\/?url=http%3A%2F%2Fnpr-brightspot.s3.amazonaws.com%2Fa0%2Fab%2F7d4d340d4a50835a5a1012aa8cda%2Fjaynalee-banks-and-tiffany-banks.png 200w,&#10;https:\/\/npr.brightspotcdn.com\/dims3\/default\/strip\/false\/crop\/3024x3024+0+0\/resize\/300\/quality\/85\/format\/png\/?url=http%3A%2F%2Fnpr-brightspot.s3.amazonaws.com%2Fa0%2Fab%2F7d4d340d4a50835a5a1012aa8cda%2Fjaynalee-banks-and-tiffany-banks.png 300w,&#10;https:\/\/npr.brightspotcdn.com\/dims3\/default\/strip\/false\/crop\/3024x3024+0+0\/resize\/400\/quality\/85\/format\/png\/?url=http%3A%2F%2Fnpr-brightspot.s3.amazonaws.com%2Fa0%2Fab%2F7d4d340d4a50835a5a1012aa8cda%2Fjaynalee-banks-and-tiffany-banks.png 400w,&#10;https:\/\/npr.brightspotcdn.com\/dims3\/default\/strip\/false\/crop\/3024x3024+0+0\/resize\/600\/quality\/85\/format\/png\/?url=http%3A%2F%2Fnpr-brightspot.s3.amazonaws.com%2Fa0%2Fab%2F7d4d340d4a50835a5a1012aa8cda%2Fjaynalee-banks-and-tiffany-banks.png 600w,&#10;https:\/\/npr.brightspotcdn.com\/dims3\/default\/strip\/false\/crop\/3024x3024+0+0\/resize\/800\/quality\/85\/format\/png\/?url=http%3A%2F%2Fnpr-brightspot.s3.amazonaws.com%2Fa0%2Fab%2F7d4d340d4a50835a5a1012aa8cda%2Fjaynalee-banks-and-tiffany-banks.png 800w,&#10;https:\/\/npr.brightspotcdn.com\/dims3\/default\/strip\/false\/crop\/3024x3024+0+0\/resize\/1200\/quality\/85\/format\/png\/?url=http%3A%2F%2Fnpr-brightspot.s3.amazonaws.com%2Fa0%2Fab%2F7d4d340d4a50835a5a1012aa8cda%2Fjaynalee-banks-and-tiffany-banks.png 1200w,&#10;https:\/\/npr.brightspotcdn.com\/dims3\/default\/strip\/false\/crop\/3024x3024+0+0\/resize\/1600\/quality\/85\/format\/png\/?url=http%3A%2F%2Fnpr-brightspot.s3.amazonaws.com%2Fa0%2Fab%2F7d4d340d4a50835a5a1012aa8cda%2Fjaynalee-banks-and-tiffany-banks.png 1600w\" data-template=\"https:\/\/npr.brightspotcdn.com\/dims3\/default\/strip\/false\/crop\/3024x3024+0+0\/resize\/{width}\/quality\/{quality}\/format\/{format}\/?url=http%3A%2F%2Fnpr-brightspot.s3.amazonaws.com%2Fa0%2Fab%2F7d4d340d4a50835a5a1012aa8cda%2Fjaynalee-banks-and-tiffany-banks.png\" sizes=\"(min-width: 1350px) 298px, (min-width: 1025px) calc(((100vw - 365px)\/3) - 30px), (min-width: 768px) calc(((100vw - 30px)\/3) - 30px), calc(100vw - 30px)\" class=\"img\" type=\"image\/png\"\/><img decoding=\"async\" src=\"https:\/\/npr.brightspotcdn.com\/dims3\/default\/strip\/false\/crop\/3024x3024+0+0\/resize\/1100\/quality\/50\/format\/png\/?url=http%3A%2F%2Fnpr-brightspot.s3.amazonaws.com%2Fa0%2Fab%2F7d4d340d4a50835a5a1012aa8cda%2Fjaynalee-banks-and-tiffany-banks.png\" data-template=\"https:\/\/npr.brightspotcdn.com\/dims3\/default\/strip\/false\/crop\/3024x3024+0+0\/resize\/{width}\/quality\/{quality}\/format\/{format}\/?url=http%3A%2F%2Fnpr-brightspot.s3.amazonaws.com%2Fa0%2Fab%2F7d4d340d4a50835a5a1012aa8cda%2Fjaynalee-banks-and-tiffany-banks.png\" class=\"img\" alt=\"Dr. Tiffany Banks with her daughter JaynaLee Banks\" loading=\"lazy\"\/>\n        <\/picture>\n<\/div>\n<div class=\"credit-caption\">\n<div class=\"caption-wrap\">\n<div class=\"caption\" aria-label=\"Image caption\">\n<p>\n                Tiffany Banks (right) with her daughter JaynaLee Banks, 18, who has autism. Tiffany described feeling dismissed and unsupported by the medical system early on when JaynaLee was younger. <br \/><b class=\"credit\" aria-label=\"Image credit\"><\/p>\n<p>                    Banks family<\/p>\n<p>                <\/b><br \/>\n                <b class=\"hide-caption\"><b>hide caption<\/b><\/b>\n            <\/p>\n<\/p><\/div>\n<p>            <b class=\"toggle-caption\"><b>toggle caption<\/b><\/b>\n    <\/div>\n<p>    <span class=\"credit\" aria-label=\"Image credit\"><\/p>\n<p>        Banks family<\/p>\n<p>    <\/span>\n<\/div><\/div>\n<h3 class=\"edTag\"><strong>The cost of getting a prescription<\/strong><\/h3>\n<p>If they can find a doctor to prescribe it, parents must next grapple with the fees. While the drug itself is not considered expensive \u2014 and is covered by some insurance plans, commonly with a diagnosis of &#8220;suspected&#8221; cerebral folate deficiency \u2014 other costs can add up, according to <a href=\"https:\/\/www.uclawsf.edu\/people\/robin-feldman\/\" target=\"_blank\" rel=\"noopener\">Robin Feldman<\/a>, a professor at the University of California College of the Law, San Francisco, who has written about prescription drug prices.<\/p>\n<p>When Balantrapu contacted Frye&#8217;s clinic, she was shocked by the cost.<\/p>\n<p><a href=\"https:\/\/drive.google.com\/file\/d\/1kglG5oySfeKYERLmZjbzSe9Sq30rK8UK\/view?usp=sharing\" target=\"_blank\" rel=\"noopener\">According<\/a> to an email from Katie Pace, an administrative assistant at Rossignol Medical Center, a visit with Frye or his research collaborator, Dr. Dan Rossignol, would cost Balantrapu&#8217;s family $1,896 plus a nonrefundable $299 deposit, with follow-ups priced at $948. NPR received a copy of the email from Balantrapu.<\/p>\n<p>&#8220;It takes time to discover and treat all the underlying medical issues in our kids,&#8221; Pace wrote, noting the practice doesn&#8217;t accept insurance.<\/p>\n<aside id=\"ad-overflow-4-wrap\" class=\"ad-wrap overflow-4\" aria-label=\"advertisement\">\n<\/aside>\n<p>Frye, who is fully booked until 2028, declined to discuss his fees. He said his income isn&#8217;t &#8220;much more&#8221; than what he earned before going into private practice, adding that he&#8217;s not benefiting from his prescribing practices. <\/p>\n<p>NPR spoke with three other providers who prescribe leucovorin and work in private practice. Their fees range from $150 to $1,500 for an initial visit.<\/p>\n<p>Balantrapu ultimately decided not to go through with an appointment, saying the price and inconvenient office location didn&#8217;t justify going to great lengths for a treatment with uncertain benefits. She added that she accepts her son&#8217;s neurodiversity and views it as integral to his identity.<\/p>\n<p>Still, she said, she&#8217;s sure other parents will try the drug. &#8220;Parents are willing to just give any amount of money \u2014 even their life \u2014 for their children,&#8221; she said. &#8220;We are giving him every resource possible under the planet and waiting for more science to happen.&#8221;<\/p>\n<h3 class=\"edTag\"><strong>Consequences of prescribing, or refusing to<\/strong><\/h3>\n<p>NPR spoke with nine doctors for this article. Each varied in their final assessment of leucovorin. Some were more open to trying it briefly, while others refused to prescribe it.<\/p>\n<p>&#8220;It&#8217;s a complicated risk-benefit analysis,&#8221; Mohiuddin explained. &#8220;It requires an individual doctor who understands the state of the science, who&#8217;s able to articulate that to a particular family and make a specific decision in the context of a particular child.&#8221;<\/p>\n<p>Doctors who don&#8217;t prescribe it lose some patients who seek the medication out elsewhere. Others have decided to prescribe it \u2014 sometimes to preserve the patient-doctor relationship and prioritize patient satisfaction.<\/p>\n<p>&#8220;It&#8217;s a tricky issue about trust because you want to win patients&#8217; trust. You cannot achieve a lot if you don&#8217;t have their trust,&#8221; said <a href=\"https:\/\/sociology.columbia.edu\/content\/gil-eyal\" target=\"_blank\" rel=\"noopener\">Gil Eyal<\/a>, a sociologist at Columbia University who studies how experts gain and lose authority. &#8220;But does that mean that you have paid in some kind of currency you didn&#8217;t want to pay, and you&#8217;re creating some damage? It&#8217;s not as simple as &#8216;Oh yeah, just prescribe it.'&#8221;<\/p>\n<aside id=\"ad-overflow-5-wrap\" class=\"ad-wrap overflow-5\" aria-label=\"advertisement\">\n<\/aside>\n<p>Clinicians like Frye, though, argue the drug is &#8220;extremely safe&#8221; and there is &#8220;little downside to trying it and incredible upside.&#8221;<\/p>\n<p>Jeste contends that some patients will get a prescription regardless of her stance, and clinicians need to decide where they set limits.<\/p>\n<p>&#8220;If you take the next drug that receives a lot of attention, maybe it&#8217;s just a tiny bit less safe. Do you decide to prescribe that one, too? And then what if the next one is just slightly less safe than that?&#8221;<\/p>\n<p>&#8220;At what point do we draw the line?&#8221; she asked. &#8220;This is not the first time nor the last time that there will be non-evidence-based alternative treatments for autism that are tried by families.&#8221;<\/p>\n<p>Mohiuddin&#8217;s verdict is that, in very selective cases, it might be reasonable to prescribe the drug. But nuanced conversations are needed, and future funding should be directed toward evidence-based interventions \u2014 like ABA therapy.<\/p>\n<p>&#8220;They need more funding and support for day-to-day services and supports that already exist,&#8221; Mohiuddin said. &#8220;All these other services and supports are really not prioritized or talked about.&#8221;<\/p>\n<p>The balance between maintaining parents&#8217; trust and sticking to evidence is delicate \u2014 and when it tips, it can lead to unintended consequences.<\/p>\n<p>&#8220;Doctors today are faced with the fact that their authority is challenged and often for good reason,&#8221; Eyal said. &#8220;The power of prescriptions is one of the main powers of doctors, and they jealously protect it.&#8221;<\/p>\n<p><em>Michal Ruprecht is a Stanford Global Health Media Fellow and a fourth-year medical student. You can follow him on Instagram at <\/em><a href=\"https:\/\/www.instagram.com\/mrup.01\/\" target=\"_blank\" rel=\"noopener\"><em>@mrup.01<\/em><\/a><em>.<\/em><\/p>\n<\/div>\n<p><script async src=\"\/\/www.instagram.com\/embed.js\"><\/script><br \/><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Swathi Balantrapu has been searching for a treatment for her 10-year-old son with autism. She first tried applied behavior analysis therapy, or ABA therapy \u2014 an evidence-based approach. She later pursued a $7,000 movement and stretching program. Like many parents of autistic kids, she also turned to alternative options, including a stem-cell therapy treatment in<\/p>\n","protected":false},"author":1,"featured_media":2122,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":"","jetpack_publicize_message":"","jetpack_publicize_feature_enabled":true,"jetpack_social_post_already_shared":true,"jetpack_social_options":{"image_generator_settings":{"template":"highway","default_image_id":0,"font":"","enabled":false},"version":2}},"categories":[2],"tags":[],"class_list":["post-2121","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-health"],"jetpack_publicize_connections":[],"_links":{"self":[{"href":"https:\/\/owspakistan.com\/index.php?rest_route=\/wp\/v2\/posts\/2121","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/owspakistan.com\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/owspakistan.com\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/owspakistan.com\/index.php?rest_route=\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/owspakistan.com\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=2121"}],"version-history":[{"count":0,"href":"https:\/\/owspakistan.com\/index.php?rest_route=\/wp\/v2\/posts\/2121\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/owspakistan.com\/index.php?rest_route=\/wp\/v2\/media\/2122"}],"wp:attachment":[{"href":"https:\/\/owspakistan.com\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=2121"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/owspakistan.com\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=2121"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/owspakistan.com\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=2121"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}