Skip to Main Content

KMAP BULLETIN: High Dollar Rare Disease Drug List Q4 2025 Update

Date: 12/01/25

KMAP GENERAL BULLETIN 25274 (PDF)

The following drugs are covered on the Managed Care Organization (MCO) High Dollar Rare Disease Drug List. The reimbursement for some high dollar rare disease drugs will be based on actual acquisition cost.

Effective with dates of service on or after November 1, 2025, the separate handling fee will no longer be paid for high dollar rare disease drug claims. Prior Authorization (PA) will still be required, along with the purchasing invoice for the drug billed. There will be no additional payment for these services.

High dollar rare disease drugs are to be billed as outpatient by the facility and will not be content of service. An exception to the inpatient/outpatient claims edits for same day billing will be allowed for these drugs. Payment for these drugs should be allowed outside of inpatient hospital reimbursement.

Rebate Status Clarification: 

  • Listed pharmaceuticals that are not rebate eligible are not covered, regardless of whether administered inpatient or outpatient.
  • Rebate status must be reviewed as part of the prior approval process, as rebate status may have changed since the last policy update.

Billing:

  • Listed pharmaceuticals must not be billed on an inpatient claim.
  • For any listed pharmaceuticals that are administered inpatient and designated as a Carve Out Drug^,  the pharmaceutical must be billed as an outpatient claim by the facility. 
    • ^Carve Out Drug indicates pharmaceuticals approved to be carved out from the inpatient bundled reimbursement rate. KMAP will publish the official list of approved carve-out drugs in an upcoming bulletin.

 

Drugs added to the High Dollar Rare Disease Drug List effective July 1, 2022:

Drug/Biologic

  • Abecma® (idecabtagene vicleucel)
  • Amondys 45 (casimersen)
  • Breyanzi® (lisocabtagene maraleucel)
  • Carvykti (ciltacabtagene autoleucel)
  • Exondys 51 (eteplirsen)
  • Givlaari® (givosiran)
  • Kymriah® (tisagenlecleucel)
  • Luxturna® (voretigene neparvovec)
  • Soliris® (eculizumab)
  • Spinraza® (nusinersen)
  • Tecartus® (brexucabtagene autoleucel)
  • Viltepso (viltolarsen)
  • Vyondys 53 (golodirsen)
  • Yescarta® (axicabtagene ciloleucel)
  • Zolgensma® (onasemnogene abeparvovec-xioi)


Drugs added to the High Dollar Rare Disease Drug List effective January 1, 2023:

Drug/Biologic

  • Amvuttra (vutrisiran)
  • Enjaymo® (sutimlimab-jome)
  • Hemgenix® (etranacogene dezaparvovec)
  • Onpattro® (patisiran)
  • Ryplazim® (plasminogen- human-tvmh,)
  • Tegsedi® (inotersen) Removed effective October 15, 2025 – product discontinued
  • Tepezza (teprotumumab)
  • Ultomiris® (ravulizumab)
  • Voxzogo® (vosoritide)
  • Xenpozyme® (olipudase alfa)
  • Zynteglo® (betibeglogene autotemcel) Removed effective October 1, 2024 - Reactivated effective October 15, 2025

 

Drugs added to the High Dollar Rare Disease Drug List effective July 1, 2023:

Drug/Biologic

  • Brineura® (cerliponase alfa)
  • Elevidys (delandistrogene moxeparvovec-rokl)
  • Lamzede® (velmanase alfa-tycv)
  • Omisirge (omidubicel)
  • Oxlumo® (lumasiran)
  • Roctavian (valoctocogene roxaparvovec-rvox)
  • Vyjuvek (beremagene geperpavec-svdt)

 

Drugs added to the High Dollar Rare Disease Drug List Effective July 1, 2024:

Drug/Biologic

  • Amtagvi (lifileucel) - Removed effective July 1, 2024, due to lack of rebate
  • Beqvez (fidanacogene elaparvovec-dzkt)
  • Lenmeldy (atidarsagene autotemcel) - Removed effective October 1, 2024. Reactivated effective October 18, 2024
  • Skysona® (elivaldogene autotemcel)


Drugs added to the High Dollar Rare Disease Drug List effective October 15, 2025:

Drug/Biologic

  • Aucatzyl (obecabtagene autoleucel)
  • Bkemv (eculizumab-aeeb)
  • Casgevy (Exagamglogene Autotemcel)
  • Encelto (revakinagene taroretcel-Lwey)
  • Epysqli (eculizumab-aagh)
  • Kebilidi (eladocagene exuparvovec-tneq)
  • Lyfgenia (Lovotibeglogene Autotemcel)
  • Ryoncil (remestemcel-l-rknd)
  • Tecelra® Afamitresgene Autoleucel 
  • Zevaskyn (prademagene zamikeracel)
  • Zynteglo (Betibeglogene autotemcel) - Previously covered for period January 1, 2024-September 30, 2024

 

Drugs added to the High Dollar Rare Disease Drug List effective January 1, 2026:

Drug/Biologic

  • Livmarli (Maralixibat)


Drugs Removed from the HDRD List:

The following drugs were removed from the HDRD List:

Drug/BiologicEffective End Dates
 Amtagvi (lifileucel)  Retroactive to July 1, 2024
 (No coverage due to lack ofrebate status) 
 Tegsedi (inotersen) January 1, 2023 –October 14, 2025 

 

Note: The effective dates of the policy are July 1, 2022; January 1, 2023; July 1, 2023; July 1, 2024; October 15, 2025; and January 1, 2026. The implementation of State policy by the KanCare Managed Care Organizations (MCOs) may vary from the date noted in the Kansas Medical Assistance Program (KMAP) bulletins. The KanCare Open Claims Resolution Log on the KMAP Bulletins page documents the MCO system status for policy implementation and any associated reprocessing completion dates once the policy is implemented.