[{"_1":2,"_100":-5,"_101":-5},"loaderData",{"_3":4,"_26":27},"root",{"_5":6,"_17":10,"_18":19,"_20":21,"_22":10,"_23":-5,"_24":-5,"_25":10},"user",{"_7":8,"_9":10,"_11":10,"_12":-5,"_13":-5,"_14":15,"_16":-5},"roles",[],"isAuthenticated",false,"isPremium","planName","subscriptionStatus","featureFlags",{},"insightsBudget","isDevelopmentHost","userPreferences",{},"recaptchaSiteKey","6LcvOJcUAAAAAHsB-gPGfGktcRlKpH7OTIU_dMTD","isImpersonating","impersonation","affiliateStatus","isFreedomPortal","routes/v2/article/layout",{"_28":29,"_30":31},"notFound",true,"relatedArticles",[32,76,88],{"_33":34,"_35":36,"_37":38,"_39":40,"_41":42,"_43":44,"_45":46,"_47":48,"_49":50,"_51":52,"_53":54,"_55":56,"_57":58,"_59":60,"_61":62,"_63":64,"_65":66,"_67":68,"_69":70,"_71":72,"_73":74,"_75":74},"mediaId",6157609,"mediaKeyId","5464746-9d464e1da87b51956bd327f755494d4b","parentId",5464746,"title","RDAC advocacy updates: conditional waivers, emergency protocols, meeting schedule and NORD conference representation","audioSeconds",1277,"startMs",1075000,"endMs",2352000,"viewUrl","/Search/View?dp=1&key=5464746-9d464e1da87b51956bd327f755494d4b&start=1075&end=2352","thumbnailUrl","https://assets.pipeline.soar.com/5464746-9d464e1da87b51956bd327f755494d4b/thumbnail_1075000.jpg","articleUrl","/articles/6157609/Connecticut/RDAC-advocacy-updates-conditional-waivers-emergency-protocols-meeting-schedule-and-NORD-conference-representation","mediaUrl","https://secure.pipeline.soar.com/6157609-1c276583ff9e903957bd07720f4233f8/orig.mp4?Expires=1775939581&Signature=AtohvIzqxYxI1SBxaqBitdTdYsARQgRy1i3e78Mw~VA3-zUBdTXWAWroZluZQAViec90RY~xQZISEHOvOinZozk4FoInMarISAXnlImgIlu0tM~ksp73ju13vqUmjz4LA6cqsvi46CyFA~L6sok4bG72V37wLrGu2OvBi6gvEsKbpUOn1OQJoLMXLsmpqipYbAfH5TgENYrBK3gz14J9F7XR4p28wSUVY6CWhGJa0nxaUz08uePIk0K2EJDTKWUQJScAqsl3CpieGrKk9K~ji4aqH2Isb0zYFQmNAahRcMTOZNoVNXHYHL4JdQHp4UBmWzA5xPaFV5vFIepoGKzvIQ__&Key-Pair-Id=KUT5TJCACFTXG","author","Department of Public Health","date","2025-07-23T12:09:40Z","article","Mary Caruso, caregiver representative and lead of the RDACs advocacy subcommittee, said the committee has grown to about 10 members and plans to meet in mid-August to prepare legislative and advocacy guidance. The committee identified two carryover issues from the prior year: emergency medical protocols for people with rare conditions and a conditional or compassionate waiver for children born with devastating progressive disorders.

Leslie said the council must meet with DPHs emergency medical officials and with DDS to pursue conditional-waiver language. \"We can get these emergency protocols certified by physicians so that, when you go into an emergency room or EMS picks you up, it's a physician order,\" Leslie said. Mary described a historical conditional waiver that used to be applied to severely affected children until age-based testing clarified eligibility; advocates said that process is now rarely used and creates a gap between age 3 and the time of formal intellectual testing.

The council discussed logistics for upcoming RDAC meetings. Emily and Melia arranged an in-person meeting in September at Yale-New Haven Hospital (YNC/\"Yukon\" in the record) on Sept. 30, and the October meeting was planned at a Berring Ingelheim site. The group had been unable to secure an August host; Leslie proposed making the August meeting virtual and moving the in-person meeting to Dec. 9. Leslie moved the proposal; Mary seconded the motion. Members indicated assent by reaction and verbal confirmation, and the council agreed to: hold the August meeting virtually at the usual hour, and schedule the in-person meeting for Dec. 9 with location to be determined.

The RDAC also discussed membership terms and appointments. Leslie reviewed current term lengths and asked two-year appointees whether they intended to seek reappointment. Gary Smart, representing the Sickle Cell Disease Association of Connecticut, said he would serve through the September meeting and was willing to be formally appointed and considered for a second term. Leslie said she would contact legislative appointing authorities (including Senator Summers) to request formal reappointment where appropriate.

Under new business, Leslie said the National Organization for Rare Disorders (NORD) will fund two RDAC leaders to attend its October conference; she asked interested RDAC leaders and committee chairs to volunteer by Aug. 1 to fill those slots. Members discussed coverage for the conference and availability.

The council did not take formal votes on policy issues during this update but took the motion and consensus action on the meeting schedule and recorded plans to pursue agency meetings and waiver work.","mediaType","Video","parentTitle","Rare Disease Advisory Council, July 22, 2025","oneSentenceSummary","The RDAC advocacy committee reported growth and plans to pursue conditional waivers and emergency-protocol recognition for rare conditions; the council set August as a virtual meeting and scheduled an in-person meeting for Dec. 9 and discussed sending one or both chairs to the NORD conference in October.","taxTitle","Department of Public Health, Departments and Agencies, Organizations, Executive, Connecticut","taxId",15791,"location","Connecticut","headline","","shortSummary",{"_33":77,"_35":36,"_37":38,"_39":78,"_41":79,"_43":80,"_45":81,"_47":82,"_49":83,"_51":84,"_53":85,"_55":56,"_57":58,"_59":86,"_61":62,"_63":64,"_65":87,"_67":68,"_69":70,"_71":72,"_73":74,"_75":74},6157615,"Yale genetics team invites RDAC members to join UDN community advisory board",288,1582000,1870000,"/Search/View?dp=1&key=5464746-9d464e1da87b51956bd327f755494d4b&start=1582&end=1870","https://assets.pipeline.soar.com/5464746-9d464e1da87b51956bd327f755494d4b/thumbnail_1582000.jpg","/articles/6157615/Connecticut/Yale-genetics-team-invites-RDAC-members-to-join-UDN-community-advisory-board","https://secure.pipeline.soar.com/6157615-03c334063d5c8b4ee4de9e7f1b7ffc18/orig.mp4?Expires=1775939580&Signature=lkwLHHnkv0OePjSuTQb8UMJb4AcCwoXkvdAD6cztfO~YjZ6~S7sd6xSckI~FJy72Q8ZTAunKGjMSDpYHuo2oybf~WxRz~~FmH6qpKrT94avmCvm-lCR3-hty8u4hcVmkvCLI1pG1JYewqyGmf3Qi3uuTcmqq5Ybjo2Ote8CiUSx~Wo0kr5KUI2erdw7WhHHVaNfk7iEwBpQ1vDeaRHFq2qRfdBdmdaqOJOL2z~cj1EnRUSbifyDrZhVBoqA~rSSucNRJ~uXl7zvu6Xx3K-v4TUW3r5gcsYHXfexJxttYd~FBo5ilgwtDH6cTfUuQe7-Twv0Uelm8cpy8Clrz5YypBw__&Key-Pair-Id=KUT5TJCACFTXG","MJ Romero, who identified herself as part of Yale School of Medicine's genetics department, briefed the council that Yale has become one of the Undiagnosed Diseases Network (UDN) centers of excellence and described a new community advisory board to connect research advances to local needs. Romero said the UDN is an NIH-funded effort that combines clinical care and basic research to find answers for people with the most challenging medical conditions.

Romero described the advisory board as a mechanism to \"make sure that all the advances in genetics research and care are directly connected with the real needs of our communities,\" and said the board will meet quarterly. She invited RDAC members and other patient advocates to volunteer via a short survey accessible by QR code and provided an email contact, undiagnosed@yale.edu, for follow-up. Romero said the second advisory-board meeting is tentatively scheduled for September.

Council members thanked Romero for the briefing and for the volunteer opportunity; no formal vote or RDAC action resulted from the presentation. The UDN presentation was scheduled as part of the RDAC's community-speaker portion of the meeting.","Yale announced it has become a center for the NIH-funded Undiagnosed Diseases Network (UDN) and invited RDAC members and partners to join a new community advisory board to expand access to diagnostics and outreach.",{"_33":89,"_35":36,"_37":38,"_39":90,"_41":91,"_43":92,"_45":93,"_47":94,"_49":95,"_51":96,"_53":97,"_55":56,"_57":58,"_59":98,"_61":62,"_63":64,"_65":99,"_67":68,"_69":70,"_71":72,"_73":74,"_75":74},6157619,"RDAC members raise alarm after HUSKY stops covering certain supplements and medical foods",581,339000,920000,"/Search/View?dp=1&key=5464746-9d464e1da87b51956bd327f755494d4b&start=339&end=920","https://assets.pipeline.soar.com/5464746-9d464e1da87b51956bd327f755494d4b/thumbnail_339000.jpg","/articles/6157619/Connecticut/RDAC-members-raise-alarm-after-HUSKY-stops-covering-certain-supplements-and-medical-foods","https://secure.pipeline.soar.com/6157619-117b95bc09242dcb6b38db60a5e2744f/orig.mp4?Expires=1775939580&Signature=M2-a2zaWtyqL7oqufSdgUxJ1mKRb-q3o9aj3z3ZWr5kZLJhtBdl9L8A5UYdAuxJxbSlxaZYWk2WMY1CNVO-IQUhxGWTTkAj08u2At4836ypmpeaFMJ2JZdmnbfxPB8hg9ZPVelm4iJAduA94Lh2qVZkH6wEJEwrs1SWb8nez~zJZdpcczrPxAalnSdhqC8qBAtVReKH~o35urypa1OL8wV4OLX8ZDlGKINhLqibSG9G8Bxr2aedUOLFc5X8X~bxCHnHRA9Tniu6Bx8mOD844iEOpvT65gw6JfxEpTYpCTDaAJy-SvtNUYmvHErPeY2vdSYTwBsqibDTRp41OpXpKlA__&Key-Pair-Id=KUT5TJCACFTXG","Michelle Spencer Manzan, co-chair and medical representative to the Rare Disease Advisory Council (RDAC), told the council that \"as of July 1, Husky is no longer covering anything that is quote unquote over the counter,\" and said the change has left some patients without life-sustaining supplements and medical foods. The council discussed immediate outreach to state agencies and legislators to seek a medical exemption or other fix.

The issue matters because members said the affected products are used as standard-of-care treatments for some rare disorders. \"They're refusing to pay for citrulline,\" Manzan said, naming a treatment she called lifesaving for urea cycle disorders. She added that coenzyme Q10 and specialized amino-acid preparations used for metabolic and mitochondrial disorders are among items no longer consistently covered. \"We can't do prior auths. We can't do exemptions, and they will not call us back to even talk about the issue,\" she said.

Council members described cases where patients have lost access to therapies: Mary Caruso, caregiver representative and parent of two adults with Friedreich's ataxia, said supplements such as CoQ10 and Niagen had been paid for in the past but increasingly face coverage denials. Emily (Germaine) Lee, the RDAC physician representative, described a broader problem of limited recognition that some inexpensive supplements are medically necessary when taken lifelong by families with little income.

Doreen Long, who identified herself as a Department of Social Services representative, said she would take the issue back to her agency and try to get someone to connect with the council; she noted that Bill Halsey is the Medicaid director. Council co-chair Leslie (last name not specified on the record) urged immediate outreach to legislators and agency leaders and recommended contacting Senator Anwar, chair of the Public Health Committee, to request help arranging meetings with DSS, the Department of Developmental Services (DDS) and the Department of Public Health (DPH). \"We need to arrange a meeting with DSS, Christine Weston, or the commissioner,\" Leslie said, adding that the pharmacy and therapeutics board might also be involved.

Council members described practical consequences and possible next steps. Manzan and others warned of short-term cost savings that could produce higher downstream hospital costs if patients stop medically indicated supplements. Leslie proposed organizing meetings with DSS, DDS and DPH by September and invited RDAC clinicians and committee chairs to participate. Doreen Long said the matter may relate to federal Medicaid rule changes and that she would seek appropriate staff at DSS to respond.

No formal action or regulatory change was adopted by the RDAC at the meeting; instead the council directed staff and members to pursue outreach and arrange interagency meetings. Leslie said she would be away until Aug. 5 and suggested holding meetings after Aug. 6; she and other RDAC members asked volunteers to join discussions with DSS, DDS and DPH.

The council identified specific items and clarifications to pursue: confirmation that the coverage change took effect July 1; the HUSKY criterion described on the record (treating items priced over $100 as over the counter); whether prior authorizations or medical exemptions remain possible; and whether the pharmacy and therapeutics board must review a policy exception for evidence-based supplements used as medication. Doreen Long said she would try to identify the correct DSS contact and return to the group with next steps.

The RDAC agreed to keep working on the matter and to invite agency officials and legislative staff to future meetings to seek a remedy. The council did not adopt a formal petition or resolution during the session.

The councils discussion was part of a broader agenda that also included subcommittee updates and planning; the HUSKY coverage discussion began during the scheduled rare-disease community-speaker portion of the meeting and continued as members identified next steps.","Members of Connecticuts Rare Disease Advisory Council said HUSKY (the state Medicaid program) stopped covering items it considers over the counter as of July 1, affecting patients with inborn errors of metabolism and other rare diseases; council agreed to pursue meetings with DSS, DDS and DPH and to contact legislative allies.","actionData","errors"]

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RDAC advocacy updates: conditional waivers, emergency protocols, meeting schedule and NORD conference representation

Yale genetics team invites RDAC members to join UDN community advisory board

RDAC members raise alarm after HUSKY stops covering certain supplements and medical foods