Arizona Center for Disability Law

 

 

 

FOR IMMEDIATE RELEASE

October 6, 2005

Media Contact:  Peri Jude Radecic,

Director of Public Advocacy

(520) 327-9547

Cell: (623) 308-5111

 

                                                                                                                                   

 

Arizona Center for Disability Law Files Suit Against AHCCCS

in Maricopa County Superior Court

 

Lawsuit Seeks Preliminary Injunction to Force AHCCCS to

Provide Lifesaving Transplant for Three Year Old Phoenix Resident.

 

Center Seeks Corrected Definition of “Experimental Treatment”

 

 

Phoenix, Arizona...........On October 5, 2005, the Arizona Center for Disability Law (Center) filed a lawsuit in Maricopa County Superior Court against the Arizona Health Care Cost Containment System (AHCCCS), Arizona’s Medicaid program, seeking a lifesaving transplant for one child but looking to challenge AHCCCS’ restrictive definition of “experimental” so that others with similar rare life threatening conditions can receive treatment.

 

The lawsuit seeks to reverse a decision by AHCCCS to deny an autologous stem cell transplant for Linda Moreno, a three year old Phoenix resident with metastatic retinoblastoma, a rare and deadly eye cancer.  The transplant is the only life saving treatment available.  In addition, the lawsuit seeks a preliminary injunction to force AHCCCS to provide the lifesaving transplant as soon as possible. The lawsuit also seeks a declaratory judgment that AHCCCS’ restrictive definition of experimental services is invalid because it conflicts with federal Medicaid law and AHCCCS’ own policies and regulations. 

 

“This case has implications for any AHCCCS recipient with a rare disease,” said Jennifer L. Nye, Staff Attorney for the Center.  “AHCCCS’ definition of an experimental service has certainly interfered with effective treatment for Linda and will severely limit options in treating other rare conditions.”      

 

Currently, AHCCCS requires evidence of standard of care, peer reviewed journal articles, and safety and effectiveness to find a service to be non-experimental.  The Center contends that meeting any one of these standards is legally sufficient to show the procedure is non-experimental. In Linda’s case, AHCCCS relied, in part, on the fact that there have not been large randomized studies of the stem cell transplant for metastatic retinoblastoma to find that it is not the standard of care and therefore experimental.

 


“In Linda’s case, the autologous stem cell transplant, is considered safe and effective and the standard of care by leading pediatric oncologists across the country,” said Nye.  “Because her condition is so rare, there have not been, and probably will never be, large randomized studies of the treatment she needs.” 

 

Affidavits submitted by leading pediatric oncologists across the county agree that if Linda doesn’t receive this transplant, she has a 90% chance of death.  With the transplant, she has a 75-80% chance of survival.

 

Retinoblastoma is an extremely rare cancer that occurs in only approximately 200-300 children per year in the United States.  In approximately 5% of these cases, or in about 10-15 children per year, the cancer recurs and metastasises outside of the eye, as it has in Linda’s case.

 

“The practical impact of AHCCCS’ definition of experimental is that it denies lifesaving treatment even when specialists in the field agree that it is the standard of care and there is authoritative evidence that the procedure is safe and effective,” said Nye.

 

A court date has not yet been set.

 

                                                                                                           

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The Arizona Center for Disability Law is a not for profit public interest law firm, dedicated to protecting the rights of individuals with a wide range of physical, mental, psychiatric, sensory and cognitive disabilities. The Arizona Center for Disability Law is authorized under various federal statutes to ensure the protection and advocacy of all individuals with disabilities in the state.