{"id":196,"date":"2026-06-19T15:07:00","date_gmt":"2026-06-19T15:07:00","guid":{"rendered":"https:\/\/americanhousingtransition.com\/?p=196"},"modified":"2026-06-19T15:07:00","modified_gmt":"2026-06-19T15:07:00","slug":"for-suffering-families-new-right-to-try-legislation-offers-a-glimmer-of-hope","status":"publish","type":"post","link":"https:\/\/americanhousingtransition.com\/?p=196","title":{"rendered":"For Suffering Families, New Right-to-Try Legislation Offers a Glimmer of Hope"},"content":{"rendered":"

When Kendra Riley\u2019s daughters were diagnosed with a rare genetic disease, doctors told her that a novel gene therapy, only available in Milan, Italy, represented their only chance for survival.\u00a0<\/span><\/p>\n

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Riley\u2019s daughters, Olivia and Keira, were diagnosed with metachromatic leukodystrophy months after they were born in 2020. Olivia\u2019s condition began to deteriorate rapidly, leaving her unable to walk or talk.<\/span><\/p>\n

Keira, however, remained asymptomatic, which made her eligible for a novel gene therapy that offered an \u201cextraordinary opportunity to save her life.\u201d But the therapy has not yet received FDA approval, so the grieving Riley family was forced to pack up and move away from home to save their daughter.<\/span><\/p>\n

\u201cOur community rallied around us to help raise the half-million dollars we needed to make the move,\u201d Riley told National Review<\/span>.<\/span><\/p>\n

But now, thanks to new legislation that was just introduced in the House and Senate, there\u2019s hope that families faced with similar tragic circumstances won\u2019t be forced away from their homes<\/p>\n

The mother of three has spent years advocating for novel gene therapies and right-to-try for individualized treatments laws after her family was forced to leave the U.S. to save her daughter.<\/span><\/p>\n

An initial right-to-try bill passed in 2018, which allows certain patients to access treatments that have undergone the phase-one testing but have not yet received FDA approval. <\/span>However, conditions such as Olivia and Keira\u2019s, which require experimental treatments tailored to their DNA, still cannot be accessed in the U.S. without formal approval.<\/span><\/p>\n

In Milan, the Rileys arrived at San Raffaele Telethon Institute for Gene Therapy and sought experimental care. Keira underwent stem cell treatments, chemotherapy, and stayed in a \u201csealing room\u201d for weeks while her body healed.<\/span><\/p>\n

\u201cThat was the hardest part of the process,\u201d said Riley. Keira was just months old.<\/span><\/p>\n

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When the Riley\u2019s returned from Italy, they started raising awareness of rare genetic illnesses, and for more pathways to treat them locally. The Rileys began to share their story, and to connect with other families dealing with metachromatic leukodystrophy.<\/span><\/p>\n

Their journey brought them into contact with Arizona state legislators and the Goldwater Institute, which has been an advocate for right-to-try laws and helped to pass the first federal right-to-try bill in 2018. Since then, almost twenty states have updated that legislation with a second right-to-try bill that allows patients to seek individualized treatments that are still in the experimental phase.\u00a0<\/span><\/p>\n

With the strong support for right-to-try at the state level, the Goldwater Institute is looking to expand nationwide with the introduction of the bill into both the House and the Senate in June.<\/span><\/p>\n

\u201cThe law was created with the idea that [for individualized treatments] \u2026 you\u2019re not going to be able to find the interest financially for taking something into trial,\u201d said Naomi Lopez, a Senior Fellow at the Goldwater Institute who researches healthcare issues.<\/span><\/p>\n

The new legislation could affect many more patients like the Riley sisters, who require care that is personalized to their DNA.<\/span><\/p>\n

\u201cThere\u2019s a much stronger growing demand, you know, with the influence of genetic testing, and gene editing, and gene therapies,\u201d said Lopez.<\/span><\/p>\n

Lopez reports that the current administration has been supportive of individualized treatments legislation, after Trump enthusiastically signed the initial right-to-try bill during his first term.<\/span><\/p>\n

The Rileys, and many other families with rare diseases, are hopeful.<\/span><\/p>\n

\u201cThis legislation is the lifeline that rare disease families have been desperately praying for,\u201d said Kendra Riley.<\/span><\/p>\n

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Kendra Riley was forced to travel to Milan to get her daughter life-saving treatment. A new bill would make the therapy available in the U.S.<\/p>\n","protected":false},"author":1,"featured_media":195,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[17],"tags":[],"class_list":["post-196","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-health-care"],"yoast_head":"\nFor Suffering Families, New Right-to-Try Legislation Offers a Glimmer of Hope - American Housing Transition<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/americanhousingtransition.com\/?p=196\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"For Suffering Families, New Right-to-Try Legislation Offers a Glimmer of Hope - American Housing Transition\" \/>\n<meta property=\"og:description\" content=\"Kendra Riley was forced to travel to Milan to get her daughter life-saving treatment. 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