{"id":6675,"date":"2019-08-21T13:09:08","date_gmt":"2019-08-21T20:09:08","guid":{"rendered":"https:\/\/jacksangelsfoundation.com\/?p=6675"},"modified":"2019-10-08T13:09:43","modified_gmt":"2019-10-08T20:09:43","slug":"the-clinical-trial-system-is-failing-americas-children","status":"publish","type":"post","link":"https:\/\/jacksangelsfoundation.com\/?p=6675","title":{"rendered":"The Clinical Trial System is failing America’s Children"},"content":{"rendered":"\n

Amanda Haddock, DragonMaster Foundation on Medium\u00a08-20-2019<\/a><\/p>\n\n\n\n

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That may seem like a bold headline, but it isn\u2019t click bait. This is a real problem facing many Americans (adults and children) in their most dire moments of need.<\/h4>\n\n\n\n

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The best way I can illustrate this is by telling you a story. It\u2019s not fictional. This story is playing out right now, as I type.<\/p>\n\n\n\n

There is a 20 year old young man, named Jace, who was just diagnosed with a highly aggressive form of brain cancer called DIPG. There is no known cure for this type of brain cancer, and the life expectancy is very short. Basically, Jace has no time to lose in finding an innovative treatment to save his life. (It shouldn\u2019t be up to Jace to find his own treatment, but that is a story for another day.)<\/p>\n\n\n\n

So Jace and his family scour the internet to try and find a treatment that might a) extend or even save Jace\u2019s life and b) help the next kid in line with this horrible disease. They call doctors and researchers literally all over the world. They find a drug that is new and showing some promise in clinical trials \u2014 BUT \u2014 Jace doesn\u2019t qualify for those clinical trials.<\/p>\n\n\n\n

There must be a good reason for that, right? Well, no, not necessarily. The drug Jace wants to go on, known as ONC201, actually has two open trials, one for adults, and one for children. Since Jace is 20, he falls between the gaps of those two trial designs.<\/p>\n\n\n\n

Let me break that down a little further for you. The adult trial has been going on for a little while, and due to the nature of adult treatments and tumor progression, this trial was designed for patients with recurrent disease. That means it can\u2019t be used as the first line of defense. (Never mind that some of those patients won\u2019t respond to the first line of defense\u2026 that, too, is a discussion for another day.) Jace doesn\u2019t qualify for the adult study because his tumor is newly diagnosed.<\/p>\n\n\n\n

The pediatric trial is for newly diagnosed patients (yay!), but Jace doesn\u2019t qualify for it either. Why not, you ask? Well, he is 20, and in the eyes of science, that is no longer a child. Never mind the fact that he has a \u201cpediatric\u201d tumor and most of the cases they would compare him to are for kids below the age of 12.<\/p>\n\n\n\n

So even though he qualifies in all other aspects, Jace doesn\u2019t match either trial\u2019s guidelines completely. So no trial for Jace. But wait. Isn\u2019t that what compassionate use is for?!? This has to be the perfect scenario, right?!?<\/p>\n\n\n\n

It would appear to be a textbook case for compassionate use, so the family appeals to the drug company. They get approved. YAY!!! Now all they have to do is get a treating hospital to agree. That should be simple, since he is so close to the qualifying criteria, right? As it turns out, no.<\/p>\n\n\n\n

So far, two hospitals have turned Jace down for compassionate use. One because their governing board couldn\u2019t reach a consensus and one because they \u201caren\u2019t doing any more compassionate use\u201d right now. I really wish I was making a typo there. I\u2019m sure it was said with more compassion than I can assign to that statement, but that is a shoulder shrug in the face of a patient whose very life hangs in the balance.<\/p>\n\n\n\n

Hospitals are businesses, and as a foundation, we spend a lot of our time trying to negotiate things to paint them in the best possible light. We want to be good partners. We want to highlight the successes and minimize the failures so that people will focus more on what we can do to work together. But this kind of thing has to be changed. NOW.<\/p>\n\n\n\n

I\u2019m writing this story in hopes that a hospital of merit will step forward and do the right thing here. I truly believe that one of them will, but I\u2019m a little ashamed that we are having to make a widespread public plea. I could help the family call all the hospitals we think might help, but that will take days, maybe weeks, and Jace doesn\u2019t have any time to lose.<\/p>\n\n\n\n

In this moment, we are failing Jace, but we don\u2019t have to. In this instance, the doors are all unlocked. We are just in need of a person who will open it and let him in. Please share this story to help draw attention to this problem in general, and Jace\u2019s specific need right now. Together, we can bring about the awareness that could easily translate to the changes needed to offer these patients hope.<\/p>\n","protected":false},"excerpt":{"rendered":"

Amanda Haddock, DragonMaster Foundation on Medium\u00a08-20-2019 That may seem like a bold headline, but it isn\u2019t click bait. This is a real problem facing many Americans (adults and children) in their most dire moments of need. The best way I can illustrate this is by telling you a story. It\u2019s\u2026<\/p>\n

Continue reading<\/i><\/a><\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[1],"tags":[337,32,1166,1377,1011],"class_list":["post-6675","post","type-post","status-publish","format-standard","hentry","category-uncategorized","tag-cancer-research","tag-childhood-cancer","tag-clinical-trials","tag-health","tag-medical-research"],"_links":{"self":[{"href":"https:\/\/jacksangelsfoundation.com\/index.php?rest_route=\/wp\/v2\/posts\/6675","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/jacksangelsfoundation.com\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/jacksangelsfoundation.com\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/jacksangelsfoundation.com\/index.php?rest_route=\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/jacksangelsfoundation.com\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=6675"}],"version-history":[{"count":0,"href":"https:\/\/jacksangelsfoundation.com\/index.php?rest_route=\/wp\/v2\/posts\/6675\/revisions"}],"wp:attachment":[{"href":"https:\/\/jacksangelsfoundation.com\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=6675"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/jacksangelsfoundation.com\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=6675"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/jacksangelsfoundation.com\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=6675"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}