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Vickroy: Medicaid cuts a nightmare for Alsip woman

AmandSellers left sits with her mother Tommi Sellers surrounded by her meds her home Alsip IL Wednesday October 24 2012.

Amanda Sellers, left, sits with her mother, Tommi Sellers, surrounded by her meds at her home in Alsip, IL on Wednesday October 24, 2012. Because of new restrictions, Tommi Sellers cannot get meds for her daughter who has a host of medical issues, including brain stem problems. Her last resort is to have her admitted to a hospital so that she can have access to the medications she needs to stay alive. | Matt Marton~Sun-Times Media

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Updated: November 29, 2012 6:26AM



Dilautin. Cymbalta. Fentanyl. Valium.

These are just a few of the 29 medications Amanda Peters takes regularly.

Born with a rare form of spina bifida, the 19-year-old Alsip woman may soon have to add “major headache” to her long list of medical issues.

New state regulations aim to reduce the number of prescription medications a Medicaid recipient can receive each month. For Amanda, the change can mean the difference between maintaining a somewhat normal life and being miserably sick. Her only hope is to get special approval to receive more than the new allotted number. But no one seems to be able to get through to the Illinois Department of Healthcare and Family Services to apply for such approval.

“This is Medicaid failure,” said Tommi Sellers, Amanda’s mom. “Amanda needs her medications. Without them, she can’t even get out of bed.”

Illinois is phasing in new Medicaid regulations that in most cases will eventually limit recipients to four prescriptions a month, three of which may be name-brand drugs. The change is part of a package of $1.6 billion in Medicaid cuts that Gov. Pat Quinn signed into law in June to help the state deal with its financial difficulties.

In addition to having their prescriptions limited, Medicaid recipients now have a $2 copay on prescriptions.

Cost out of reach

For Amanda, who capped out of private health insurance a long time ago, that alone is a challenge. The teenager receives $670 a month from Social Security.

“If they cut her off from all these meds, there is no way she could begin to pay for them herself,” Tommi said.

With Tommi’s husband, Mike, out of work as he recovers from cancer, there is only so much they can do to help.

Amanda was diagnosed at age 6, although her mom suspected something was amiss long before that.

She was born with a sacral dimple, an indentation just above the buttocks that is often associated with serious abnormalities of the spine. Back then, Amanda’s pediatrician assured Tommi that everything was fine. As her daughter grew, Tommi began to notice that she walked with an intoe (a deformity of the foot) and that she fell down a lot.

Finally, when Amanda was 5, Tommi took her to Shriners Hospital for Children. Tests were done, and a rare form of spina bifida was diagnosed.

Amanda’s complex neurological condition has resulted in autonomic neuropathy, brain atrophy and brain stem weakness. She had her first surgery when she was 6, and has had more than 50 since. Another is scheduled for Nov. 19.

Meanwhile, Tommi, who works with deaf and hearing-challenged students at Eisenhower co-op, spends her free time trying to navigate the bureaucratic nightmare that has besieged her daughter’s prescription drug plan.

Because Amanda cannot tolerate much by mouth — only bland foods in small amounts — most of her meds are administered through tubes in her abdomen.

“Amanda spent more of her teenage days in the hospital than she did in high school,” Tommi said, explaining why her oldest child still is a student at Shepard High School in Palos Heights.

Though she can walk short distances, Amanda spends most of her time in a wheelchair. The risk of falling is simply too great, her mother said.

Amanda likes to read, especially fantasy science fiction. She also loves science and has become somewhat of an expert on anatomy and prescription medications. She knows, for example, that if the state cuts off her supply of Dilautin, a strong narcotic painkiller, she will go into withdrawal.

A tough transition

Tommi insists Amanda needs all of the meds she takes. Yet when she tries to fill prescriptions that exceed the limit, her pharmacist says they are rejected by the state. Her provider has been unable to get through to the IDHFS to get approval for additional medications.

“My last resort will be to take her to the emergency room,” Tommi said. “How is that saving the state money?”

Good question, says William Werner, an internist in Chicago and the president of the Illinois State Medical Society. He says while there is no data yet to support the patients’ and providers’ claims of difficulty with the new system, there is plenty of anecdotal evidence that it has not been an easy transition.

“We’re hearing that a lot of physicians can’t get through to get preauthorization for additional drugs for their patients,” he said.

“We’re not sure who determined that four is the magic number in terms of how many medications a patient should be able to receive,” he said. They’re also wondering how physicians will deal with the additional hassle of trying to get prior authorization or looking for ways around the system by, perhaps, prescribing less-expensive generic drugs when a patient exceeds the limit.

“This is a problem,” Werner said. “We just can’t get our arms around how big it is.”

IDHFS spokesman Mike Claffey said in addition to saving the state millions of dollars, the new prescription limit aims to keep people healthier by eliminating drugs that may be unnecessary or may negatively interact.

“A lot of patients see more than one doctor and those doctors sometimes prescribe drugs that don’t work well together,” he said.

“We want to emphasize that we are complying with the SMART (Save Medicaid Access and Resources Together) Act as well as trying to make sure people are only taking those drugs that are absolutely necessary,” he said.

Werner said the topic of unnecessary medications is indeed worth addressing.

“But we’re already seeing less of that now that there is electronic data keeping, making it easy for physicians to share information,” he said.

Claffey said patients who absolutely need more than the allowed number of prescriptions can have their physician submit a request for prior approval with the IDHFS. Such requests are reviewed by staff pharmacists, and if the meds are on a list of approved drugs and are deemed medically necessary, he said, prior approval will be granted. Prior approval is good for one year, Claffey said.

Claffey also said department staff are not available to process prior approval requests during nonbusiness hours, but in an emergency, a pharmacy can dispense a 72-hour supply, and will be reimbursed after it follows up with a prior approval request.

‘Phone is always busy’

But Tommi said Amanda’s provider has tried numerous times to get prior approval through a phone number and web portal the state provides.

“The phone is always busy and the office denies ever receiving any requests through the portal, even though Amanda’s doctor’s nurse says they were submitted,” Tommi said. She showed me a letter from the nurse that illustrates the frustration the office has had trying to get prior approval.

Claffey said the IDHFS hot line has been inundated with requests and questions.

“There have been some challenges,” Claffey said. “But we’ve brought on more staff and we’re asking people to be patient.”

Amanda said, “Patience is the one thing you learn from being a patient.”

Prior approval requests can be submitted by calling (800) 252-8942, or by fax to (217) 524-7264 or (217) 524-0404. For more information on the changes, a list of approved drugs and to access the prior authorization form, visit www.ilpriorauth.com/



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