{"id":18469,"date":"2021-07-14T08:15:38","date_gmt":"2021-07-14T12:15:38","guid":{"rendered":"https:\/\/medicarereport.org\/?p=18469"},"modified":"2021-07-14T08:15:38","modified_gmt":"2021-07-14T12:15:38","slug":"dying-patients-with-rare-diseases-struggle-to-get-experimental-therapies","status":"publish","type":"post","link":"https:\/\/medicarereport.org\/?p=18469","title":{"rendered":"Dying Patients With Rare Diseases Struggle to Get Experimental Therapies"},"content":{"rendered":"<p>(By Christina Bennett for Kaiser Health News)<\/p>\n<p>At 15, Autumn Fuernisen is dying. She was diagnosed at age 11 with a rare degenerative brain disorder that has no known cure or way to slow it down: juvenile-onset Huntington\u2019s disease.<\/p>\n<p>\u201cThere\u2019s lots of things that she used to be able to do just fine,\u201d said her mom, Londen Tabor, who lives with her daughter in Gillette, Wyoming. Autumn\u2019s speech has become slurred and her cognitive skills slower. She needs help with many tasks, such as writing, showering and dressing, and while she can walk, her balance is off.\u00a0 Continue reading the article <a href=\"https:\/\/khn.org\/news\/article\/dying-patients-with-rare-diseases-struggle-to-get-experimental-therapies\/\">here&#8230;<\/a><\/p>\n<p>Kaiser Health News is a nonprofit national health policy news service that is part of the nonpartisan Henry J. Kaiser Family Foundation<\/p>\n<p><a href=\"https:\/\/medicarereport.org\/wp-content\/uploads\/2015\/10\/khn-logo1.png\"><img loading=\"lazy\" decoding=\"async\" class=\"alignnone size-medium wp-image-899\" src=\"https:\/\/medicarereport.org\/wp-content\/uploads\/2015\/10\/khn-logo1-300x156.png\" alt=\"\" width=\"300\" height=\"156\" srcset=\"https:\/\/medicarereport.org\/wp-content\/uploads\/2015\/10\/khn-logo1-300x156.png 300w, https:\/\/medicarereport.org\/wp-content\/uploads\/2015\/10\/khn-logo1-1024x533.png 1024w, https:\/\/medicarereport.org\/wp-content\/uploads\/2015\/10\/khn-logo1.png 1600w\" sizes=\"auto, (max-width: 300px) 100vw, 300px\" \/><\/a><\/p>\n<pre><strong>Notice:<\/strong> The link provided above connects readers to the full content of the posted article. The URL (internet address) for this link is valid on the posted date; medicarereport.org cannot guarantee the duration of the link\u2019s validity. Also, the opinions expressed in these postings are the viewpoints of the original source and are not explicitly endorsed by AMAC, Inc.; the AMAC Foundation, Inc.; or medicarereport.org<\/pre>\n","protected":false},"excerpt":{"rendered":"<p>(By Christina Bennett for Kaiser Health News) At 15, Autumn Fuernisen is dying. She was diagnosed at age 11 with<\/p>\n","protected":false},"author":4,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[31,15],"tags":[],"class_list":["post-18469","post","type-post","status-publish","format-standard","hentry","category-fda","category-part-dprescription-drugs"],"_links":{"self":[{"href":"https:\/\/medicarereport.org\/index.php?rest_route=\/wp\/v2\/posts\/18469","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/medicarereport.org\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/medicarereport.org\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/medicarereport.org\/index.php?rest_route=\/wp\/v2\/users\/4"}],"replies":[{"embeddable":true,"href":"https:\/\/medicarereport.org\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=18469"}],"version-history":[{"count":1,"href":"https:\/\/medicarereport.org\/index.php?rest_route=\/wp\/v2\/posts\/18469\/revisions"}],"predecessor-version":[{"id":18470,"href":"https:\/\/medicarereport.org\/index.php?rest_route=\/wp\/v2\/posts\/18469\/revisions\/18470"}],"wp:attachment":[{"href":"https:\/\/medicarereport.org\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=18469"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/medicarereport.org\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=18469"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/medicarereport.org\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=18469"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}