{"id":3130,"date":"2025-05-08T15:10:25","date_gmt":"2025-05-08T15:10:25","guid":{"rendered":"https:\/\/healthyretirementnews.com\/index.php\/2025\/05\/08\/privacy-concerns-swirl-around-hhs-plan-to-build-medicare-medicaid-database-on-autism\/"},"modified":"2025-05-08T15:10:25","modified_gmt":"2025-05-08T15:10:25","slug":"privacy-concerns-swirl-around-hhs-plan-to-build-medicare-medicaid-database-on-autism","status":"publish","type":"post","link":"https:\/\/healthyretirementnews.com\/index.php\/2025\/05\/08\/privacy-concerns-swirl-around-hhs-plan-to-build-medicare-medicaid-database-on-autism\/","title":{"rendered":"Privacy concerns swirl around HHS plan to build Medicare, Medicaid database on autism"},"content":{"rendered":"<div data-uri=\"cms.cnn.com\/_components\/action-bar\/instances\/cmae0uk55000r26qfd0zsdqkz@published\" data-label-id-prefix=\"action-bar-start-of-article\" class=\"action-bar\" 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data-url=\"https:\/\/www.facebook.com\/dialog\/share?app_id=80401312489&amp;href=https%3A%2F%2Fwww.cnn.com%2F2025%2F05%2F07%2Fhealth%2Fautism-database-hhs-medicare-medicaid-privacy&amp;display=popup\" data-type=\"facebook\" aria-label=\"share with facebook\" title=\"Share with Facebook\">                                <span class=\"social-share_labelled-list__share-links--label\">Facebook<\/span>        <\/button>        <button class=\"social-share_labelled-list__share\" data-url=\"https:\/\/twitter.com\/intent\/tweet?text=Check%20out%20this%20article%3A&amp;url=https%3A%2F%2Fwww.cnn.com%2F2025%2F05%2F07%2Fhealth%2Fautism-database-hhs-medicare-medicaid-privacy\" data-type=\"x\" aria-label=\"share with x\" title=\"Share with X\">                                <span class=\"social-share_labelled-list__share-links--label\">Tweet<\/span>        <\/button>                                        <span class=\"social-share_labelled-list__share-links--label\">Email<\/span>                <button class=\"social-share_labelled-list__share\" data-url=\"https:\/\/www.cnn.com\/2025\/05\/07\/health\/autism-database-hhs-medicare-medicaid-privacy\" data-type=\"copy\" aria-label=\"copy link to clipboard\" title=\"Copy link to clipboard\">                                <span class=\"social-share_labelled-list__share-links--label\">Link<\/span>        <\/button>        <\/p>\n<div class=\"social-share_labelled-list__copied\" data-type=\"message\">                        Link Copied!        <\/div>\n<\/p>\n<\/div>\n<p>    <button class=\"social-share_labelled-list__open\" data-type=\"open\" aria-label=\"open social share\" title=\"Open social share\">            <\/button>    <button class=\"social-share_labelled-list__close\" data-type=\"close\" aria-label=\"close social share\" title=\"Close social share\">            <\/button><\/div>\n<\/p>\n<\/div>\n<\/div>\n<div class=\"action-bar__buttons\">            <button class=\"action-bar__button\" data-title=\"follow\">                                        Follow            <\/button>            <button class=\"action-bar__button\" data-title=\"share options\">                                <\/button>    <\/div>\n<\/div>\n<p class=\"paragraph-elevate inline-placeholder vossi-paragraph\" data-uri=\"cms.cnn.com\/_components\/paragraph\/instances\/cmae0uqpa00033b6mrdrlttak@published\" data-editable=\"text\" data-component-name=\"paragraph\" data-article-gutter=\"true\">            The US Department of Health and Human Services on Wednesday unveiled a pilot program for the National Institutes of Health to tap into Medicare and Medicaid data in its search for the root causes of autism.    <\/p>\n<p class=\"paragraph-elevate inline-placeholder vossi-paragraph\" data-uri=\"cms.cnn.com\/_components\/paragraph\/instances\/cmae0uqpa00043b6m1eas2uep@published\" data-editable=\"text\" data-component-name=\"paragraph\" data-article-gutter=\"true\">            The database \u2014 which HHS said will draw from insurance claims, medical records and data from wearable technology such as smartwatches \u2014 is one of the first steps in HHS Secretary Robert F. Kennedy Jr.\u2019s bid to find the causes of autism \u201cby September.\u201d    <\/p>\n<p class=\"paragraph-elevate inline-placeholder vossi-paragraph\" data-uri=\"cms.cnn.com\/_components\/paragraph\/instances\/cmae0uqpa00053b6mqboqyqg8@published\" data-editable=\"text\" data-component-name=\"paragraph\" data-article-gutter=\"true\">            Early signals from health officials that they would build a database to track autism were met with swift rebuke from advocacy organizations and doctors.    <\/p>\n<p class=\"paragraph-elevate inline-placeholder vossi-paragraph\" data-uri=\"cms.cnn.com\/_components\/paragraph\/instances\/cmae0uqpa00063b6mh752us1x@published\" data-editable=\"text\" data-component-name=\"paragraph\" data-article-gutter=\"true\">            NIH Director Dr. Jay Bhattacharya\u2019s initial description last month of a \u201cnew autism registry\u201d with \u201cbroad coverage\u201d of the US population raised red flags and questions about privacy, the Autism Science Foundation said in a statement shortly after the news. The Autism Self Advocacy Network lambasted the project as an example of how the administration has \u201ccompletely frozen out autistic people.\u201d    <\/p>\n<div data-uri=\"cms.cnn.com\/_components\/related-content\/instances\/cmae0x8jf000w3b6m4bjndrpo@published\" data-component-name=\"related-content\" class=\"related-content-elevate related-content--article\" data-article-gutter=\"true\">\n<header class=\"related-content__title related-content__title-text\" data-editable=\"content.title\">Related article<\/header>\n<section class=\"related-content__body\">\n<div class=\"related-content__image image__related-content\">\n<div data-uri=\"cms.cnn.com\/_components\/image\/instances\/cm9k6w9gg001n26p4ainj3ko5@published\" class=\"image-elevate image__hide-placeholder\" data-image-variation=\"image\" data-name=\"AP25106594512179.jpg\" data-component-name=\"image\" data-observe-resizes=\"\" data-breakpoints=\"{&quot;image--eq-extra-small&quot;: 115, &quot;image--eq-small&quot;: 300, &quot;image--eq-large&quot;: 660}\" data-original-ratio=\"0.5626666666666666\" data-original-height=\"1688\" data-original-width=\"3000\" data-url=\"https:\/\/media.cnn.com\/api\/v1\/images\/stellar\/prod\/ap25106594512179.jpg?c=original\" data-editable=\"settings\">\n<div class=\"image__container \" data-image-variation=\"image\" data-breakpoints=\"{&quot;image--eq-extra-small&quot;: 115, &quot;image--eq-small&quot;: 300, &quot;image--show-credits&quot;: 525}\">           <\/div>\n<div class=\"image__metadata-container media__metadata-container\">\n<div class=\"image__metadata media__metadata\">\n<div class=\"image__caption attribution\">    <span data-editable=\"metaCaption\" class=\"inline-placeholder\">Health and Human Services Secretary Robert F. Kennedy Jr. speaks during a news conference on the Autism report by the CDC at the Hubert Humphrey Building Auditorium in Washington, Wednesday, April 16, 2025. (AP Photo\/Jose Luis Magana)<\/span>  <\/div><figcaption class=\"image__credit\">Jose Luis Magana\/AP<\/figcaption><\/div>\n<\/p>\n<\/div>\n<\/div>\n<\/div>\n<p class=\"related-content__headline\">        <span class=\"related-content__headline-text\" data-editable=\"content.headline\">In first news conference as HHS secretary, Kennedy says autism is an epidemic in the US<\/span>      <\/p>\n<\/section>\n<\/div>\n<p class=\"paragraph-elevate inline-placeholder vossi-paragraph\" data-uri=\"cms.cnn.com\/_components\/paragraph\/instances\/cmae0uqpa00073b6m4pbo8s89@published\" data-editable=\"text\" data-component-name=\"paragraph\" data-article-gutter=\"true\">            HHS nodded to those concerns in its announcement Wednesday. It said the NIH and the Centers for Medicare &amp; Medicaid Services will start with a data use agreement focused on Medicare and Medicaid enrollees diagnosed with autism spectrum disorder and then establish a \u201csecure tech-enabled mechanism\u201d that will share data with \u201ctimely, privacy and security compliant data exchange.\u201d The agencies will eventually build out the pilot database to share data on chronic illnesses and their economic burden, HHS said.    <\/p>\n<p class=\"paragraph-elevate inline-placeholder vossi-paragraph\" data-uri=\"cms.cnn.com\/_components\/paragraph\/instances\/cmae0uqpa000a3b6m7h1yz02j@published\" data-editable=\"text\" data-component-name=\"paragraph\" data-article-gutter=\"true\">            There are also limitations to CMS data, Tager-Flusberg said. \u201cIf you\u2019re talking about Medicare and Medicaid, that only focuses on certain portions of the population.\u201d    <\/p>\n<p class=\"paragraph-elevate inline-placeholder vossi-paragraph\" data-uri=\"cms.cnn.com\/_components\/paragraph\/instances\/cmae0uqpa000b3b6m6j0vt0ne@published\" data-editable=\"text\" data-component-name=\"paragraph\" data-article-gutter=\"true\">            Medicaid is a federal and state partnership covering low-income adults and children. Medicare is a federal program primarily for Americans 65 and older, although younger people with disabilities are also enrolled.    <\/p>\n<p class=\"paragraph-elevate inline-placeholder vossi-paragraph\" data-uri=\"cms.cnn.com\/_components\/paragraph\/instances\/cmae0uqpa000c3b6mlzlye9bd@published\" data-editable=\"text\" data-component-name=\"paragraph\" data-article-gutter=\"true\">            There are permissible uses of CMS data for medical research but very stringent privacy laws, Jeff Wurzburg, former HHS general counsel and a health care regulatory attorney at Norton Rose Fulbright, said before Wednesday\u2019s announcement. \u201cOne of the primary, overarching goals of CMS is protection of the beneficiary. So it\u2019s certainly legitimate and reasonable to raise questions about how this data will be collected and protected.\u201d    <\/p>\n<p class=\"paragraph-elevate inline-placeholder vossi-paragraph\" data-uri=\"cms.cnn.com\/_components\/paragraph\/instances\/cmaeav9v200003b6m3ac92vqc@published\" data-editable=\"text\" data-component-name=\"paragraph\" data-article-gutter=\"true\">            An HHS spokesperson said Wednesday, \u201cData with personal identifiers are subject to federal privacy laws and regulations. This data platform would be fully compliant with these laws and regulations to protect Americans\u2019 sensitive health information.\u201d    <\/p>\n<p class=\"paragraph-elevate inline-placeholder vossi-paragraph\" data-uri=\"cms.cnn.com\/_components\/paragraph\/instances\/cmae7ixix00043b6mb9ggurzt@published\" data-editable=\"text\" data-component-name=\"paragraph\" data-article-gutter=\"true\">            Autism advocates and scientists have also questioned Kennedy\u2019s claim that health agencies would find the causes of autism by September, a timeline that Bhattacharya has already appeared to walk back.    <\/p>\n<p class=\"paragraph-elevate inline-placeholder vossi-paragraph\" data-uri=\"cms.cnn.com\/_components\/paragraph\/instances\/cmae7jwrs00083b6mhuvmfks6@published\" data-editable=\"text\" data-component-name=\"paragraph\" data-article-gutter=\"true\">            \u201cScience happens at its own pace. We\u2019re accelerating and cutting the red tape that normally comes with putting together a scientific program like this,\u201d Bhattacharya said April 22. \u201cWe\u2019ll have, I hope, in September, something that in place where the scientists that want to want to compete for these [grant] awards will be able to do that.\u201d    <\/p>\n<h2 class=\"subheader inline-placeholder subheader-elevate\" data-editable=\"text\" data-uri=\"cms.cnn.com\/_components\/subheader\/instances\/cmae7h93400013b6m0tuwi8w4@published\" data-component-name=\"subheader\" id=\"flood-of-concerned-calls-about-registry\" data-article-gutter=\"true\">        \u2018Flood\u2019 of concerned calls about registry<\/h2>\n<p class=\"paragraph-elevate inline-placeholder vossi-paragraph\" data-uri=\"cms.cnn.com\/_components\/paragraph\/instances\/cmae6yo0j00003b6m0iirvg2m@published\" data-editable=\"text\" data-component-name=\"paragraph\" data-article-gutter=\"true\">            The lack of clarity around how this autism<strong> <\/strong>data would be used, who would have access to it and patients\u2019 consent to its use has spread fear throughout the community.    <\/p>\n<p class=\"paragraph-elevate inline-placeholder vossi-paragraph\" data-uri=\"cms.cnn.com\/_components\/paragraph\/instances\/cmae6z5vq00043b6mpkcqfkrr@published\" data-editable=\"text\" data-component-name=\"paragraph\" data-article-gutter=\"true\">            The Autism Science Foundation was \u201cflooded\u201d with calls, emails and texts after Bhattacharya\u2019s initial comments about a registry, co-founder and President Alison Singer said. The latest announcement did not abate those concerns.    <\/p>\n<p class=\"paragraph-elevate inline-placeholder vossi-paragraph\" data-uri=\"cms.cnn.com\/_components\/paragraph\/instances\/cmae6z5vq00053b6mpoxmfz3o@published\" data-editable=\"text\" data-component-name=\"paragraph\" data-article-gutter=\"true\">            \u201cThe one that concerns me the most is people with autism who are saying that they\u2019re afraid to go to the doctor; families who have said they have concerns about their toddlers, but they\u2019re afraid to take them for diagnosis,\u201d Singer said. \u201cIt\u2019s having a chilling effect on medical care.\u201d    <\/p>\n<div data-uri=\"cms.cnn.com\/_components\/related-content\/instances\/cmae0xxti000y3b6mj024lq2t@published\" data-component-name=\"related-content\" class=\"related-content-elevate related-content--article\" data-article-gutter=\"true\">\n<header class=\"related-content__title related-content__title-text\" data-editable=\"content.title\">Related article<\/header>\n<section class=\"related-content__body\">\n<div class=\"related-content__image image__related-content\">\n<div data-uri=\"cms.cnn.com\/_components\/image\/instances\/cm9odu0st000q2dnuh19zaovf@published\" class=\"image-elevate image__hide-placeholder\" data-image-variation=\"image\" data-name=\"GettyImages-2209968956.jpg\" data-component-name=\"image\" data-observe-resizes=\"\" data-breakpoints=\"{&quot;image--eq-extra-small&quot;: 115, &quot;image--eq-small&quot;: 300, &quot;image--eq-large&quot;: 660}\" data-original-ratio=\"0.6663333333333333\" data-original-height=\"1999\" data-original-width=\"3000\" data-url=\"https:\/\/media.cnn.com\/api\/v1\/images\/stellar\/prod\/gettyimages-2209968956.jpg?c=original\" data-editable=\"settings\">\n<div class=\"image__container \" data-image-variation=\"image\" data-breakpoints=\"{&quot;image--eq-extra-small&quot;: 115, &quot;image--eq-small&quot;: 300, &quot;image--show-credits&quot;: 525}\">           <\/div>\n<div class=\"image__metadata-container media__metadata-container\">\n<div class=\"image__metadata media__metadata\">\n<div class=\"image__caption attribution\">    <span data-editable=\"metaCaption\" class=\"inline-placeholder\">Health and Human Services Secretary Robert F. Kennedy, Jr., conducts a news conference to discuss the Centers for Disease Control and Prevention&#8217;s latest Autism and Developmental Disabilities Monitoring (ADDM) Network survey, at the Hubert Humphrey Building on Wednesday, April 16, 2025. The survey states there has been a rise in Autism diagnoses in children.<\/span>  <\/div><figcaption class=\"image__credit\">Tom Williams\/CQ-Roll Call, Inc.\/Getty Images<\/figcaption><\/div>\n<\/p>\n<\/div>\n<\/div>\n<\/div>\n<p class=\"related-content__headline\">        <span class=\"related-content__headline-text\" data-editable=\"content.headline\">Many in the autism community say RFK Jr. is pushing harmful and regressive rhetoric about who they are<\/span>      <\/p>\n<\/section>\n<\/div>\n<p class=\"paragraph-elevate inline-placeholder vossi-paragraph\" data-uri=\"cms.cnn.com\/_components\/paragraph\/instances\/cmae6z5vq00063b6mifkjbhfd@published\" data-editable=\"text\" data-component-name=\"paragraph\" data-article-gutter=\"true\">            Singer said the foundation is supportive of registries, which can be valuable for tracking care and outcomes over time. But the lack of details about privacy \u2013 or dialogue with the autism community before launching the project \u2013 has made it difficult to quell those concerns.    <\/p>\n<p class=\"paragraph-elevate inline-placeholder vossi-paragraph\" data-uri=\"cms.cnn.com\/_components\/paragraph\/instances\/cmae6z5vq00073b6mvqdddxrx@published\" data-editable=\"text\" data-component-name=\"paragraph\" data-article-gutter=\"true\">            \u201cWe\u2019ve tried to allay the fear around a registry in general, but we can\u2019t really do that until there\u2019s more information shared from the administration about how it\u2019s going to be put together.\u201d    <\/p>\n<p class=\"paragraph-elevate inline-placeholder vossi-paragraph\" data-uri=\"cms.cnn.com\/_components\/paragraph\/instances\/cmaeaw64c00023b6msczkk2mr@published\" data-editable=\"text\" data-component-name=\"paragraph\" data-article-gutter=\"true\">            The HHS spokesperson said, \u201cLet\u2019s be clear: this initiative is about advancing science, improving care, and supporting families. Understanding the scope and burden of a condition is standard in public health and crucial to driving funding, improving services, and informing policy.\u201d    <\/p>\n<p class=\"paragraph-elevate inline-placeholder vossi-paragraph\" data-uri=\"cms.cnn.com\/_components\/paragraph\/instances\/cmae6z5vq00083b6mp803lls0@published\" data-editable=\"text\" data-component-name=\"paragraph\" data-article-gutter=\"true\">            Other autism advocates are adamantly opposed to the idea of a registry, citing the way Kennedy has spoken about people with autism. The HHS secretary recently said autism is part of a \u201cchronic disease epidemic\u201d that \u201cdestroys\u201d children and families, and he faced criticism for saying people with autism will \u201cnever\u201d pay taxes, hold a job, play baseball, write a poem, go on a date or use a toilet without assistance. Kennedy later said he was speaking about people with \u201csevere\u201d autism.    <\/p>\n<p class=\"paragraph-elevate inline-placeholder vossi-paragraph\" data-uri=\"cms.cnn.com\/_components\/paragraph\/instances\/cmae6z5vq00093b6mg82flbcw@published\" data-editable=\"text\" data-component-name=\"paragraph\" data-article-gutter=\"true\">            \u201cThis is setting a precedent that it is somehow OK to weaponize somebody\u2019s medical diagnosis for political reasons,\u201d said Nicole Clark, a nurse and co-founder of the Florida-based Adult and Pediatric Institute for Health and Wellness.    <\/p>\n<p class=\"paragraph-elevate inline-placeholder vossi-paragraph\" data-uri=\"cms.cnn.com\/_components\/paragraph\/instances\/cmae6z5vr000a3b6m8moigu6a@published\" data-editable=\"text\" data-component-name=\"paragraph\" data-article-gutter=\"true\">            \u201cSomeone having a medical diagnosis going into a registry to prove financial burden \u2014 what\u2019s the end goal of this? What are we looking to do here?\u201d asked Clark, who also has two young children with autism.    <\/p>\n<p class=\"paragraph-elevate inline-placeholder vossi-paragraph\" data-uri=\"cms.cnn.com\/_components\/paragraph\/instances\/cmae92qoc00013b6m9y9ygl83@published\" data-editable=\"text\" data-component-name=\"paragraph\" data-article-gutter=\"true\">            She described conversations with other health care providers about the fear already circulating among autistic people and their families, with some patients asking their doctors whether they can get their autism diagnosis removed from medical records.    <\/p>\n<p class=\"paragraph-elevate inline-placeholder vossi-paragraph\" data-uri=\"cms.cnn.com\/_components\/paragraph\/instances\/cmae6z5vr000b3b6ml8o75feb@published\" data-editable=\"text\" data-component-name=\"paragraph\" data-article-gutter=\"true\">            \u201cAre we going to use this data to create fear within providers to not want to diagnose?\u201d Clark asked. \u201cThis just feeding off of the fear of what we don\u2019t understand.\u201d    <\/p>\n<\/p>\n<div>This post appeared first on cnn.com<\/div>\n<p><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Disability issues Health care policy Federal agencies See all topics Facebook Tweet Email Link Link&hellip;<\/p>\n","protected":false},"author":1,"featured_media":3131,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[20],"tags":[],"class_list":["post-3130","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-health-news"],"_links":{"self":[{"href":"https:\/\/healthyretirementnews.com\/index.php\/wp-json\/wp\/v2\/posts\/3130","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/healthyretirementnews.com\/index.php\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/healthyretirementnews.com\/index.php\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/healthyretirementnews.com\/index.php\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/healthyretirementnews.com\/index.php\/wp-json\/wp\/v2\/comments?post=3130"}],"version-history":[{"count":0,"href":"https:\/\/healthyretirementnews.com\/index.php\/wp-json\/wp\/v2\/posts\/3130\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/healthyretirementnews.com\/index.php\/wp-json\/wp\/v2\/media\/3131"}],"wp:attachment":[{"href":"https:\/\/healthyretirementnews.com\/index.php\/wp-json\/wp\/v2\/media?parent=3130"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/healthyretirementnews.com\/index.php\/wp-json\/wp\/v2\/categories?post=3130"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/healthyretirementnews.com\/index.php\/wp-json\/wp\/v2\/tags?post=3130"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}