Chloe Jones 1 Medicaid 0 PBMs -1

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  • 02/09/2015
Day after my NY Post article discussed how Arkanasa Medicaid denied 14 year Chloe Jones  a drug tailored to treat her form of CF...

State settles Medicaid suit over cystic fibrosis drug
Arkansas Times
Posted By Leslie Newell Peacock on Fri, Feb 6, 2015 at 12:05 PM

The state Medicaid office has settled a federal lawsuit brought by three cystic fibrosis patients who were denied the drug Kalydeco because of cost, the Wall Street Journal reported yesterday.

Catherine Kiger, Elizabeth West and Chloe Jones filed the suit, Kiger v. Selig et al, last year saying the state had violated their civil rights for two years by denying them the drug. The settlement was filed Thursday in federal court in Fayetteville.

Kate Luck, a spokesperson for the state Department of Human Services, said the settlement involved no monetary awards, but the state, which changed its criteria for eligibility for the drug prior to the settlement, has agreed not to change those criteria for two years. Should the state deny the drug to a Medicaid patient, it must provide the court reasons why and the court may  jurisdiction over the state's decision. ask the state "to outline the reasons for denial," Krell said.

The courts do not have jurisdiction over the decision. The only thing they can do is ask us to outline the reasons for denial.

The state previously had required the patients to prove that less expensive therapies had failed to work and,   according to the WSJ, "patients seeking to have their prescriptions reauthorized by Arkansas Medicaid were required to prove they had better lung function, weight gain and fewer hospitalizations with the drug."

The state no longer requires the patients to use the standard therapy (Pulmozyme and hypertonic saline) for 12 months before being considered for Kalydeco or to show evidence of failure on the standard therapy, Luck said. She said the studies were "made in response to more recent studies that were released on the drug. Arkansas has covered Kalydeco since 2012 and approved its first patient for coverage in 2013."

The manufacturer of Kalydeco, Vertex, of Boston, had declined to provide the drug free through its patient-assistance program. The drug targets a specific genetic cause of CF, and Luck said the state estimates that only seven CF patients in the state Medicaid program whose disease is caused by the particular gene mutation. While Luck said the denials were not "necessarily because of cost," she added that that the drug is "very expensive" and a "lifetime drug."

The annual wholesale cost of the drug is $311,000, according to the WSJ.

Center for Medicine in the Public Interest is a nonprofit, non-partisan organization promoting innovative solutions that advance medical progress, reduce health disparities, extend life and make health care more affordable, preventive and patient-centered. CMPI also provides the public, policymakers and the media a reliable source of independent scientific analysis on issues ranging from personalized medicine, food and drug safety, health care reform and comparative effectiveness.

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