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Kelly Phenix may not be able to continue taking the medication she needs for her 11 chronic conditions and Linda Roucoulet, who has multiple sclerosis, may lose her motorized wheelchair if lawmakers and Gov. M. Jodi Rell decide to change the definition of medical necessity for the 420,000 individuals on state Medicaid assistance.

Phenix, 38, said Thursday at a Capitol press conference that when she was finally diagnosed five years ago with bipolar disorder she was prescribed Zyprexa. Within four months she developed diabetes as a result of the medication. She said she is now on a medication which helps control her bipolar disorder and does not want to go back to square one testing medications, which may not work or may create another chronic condition.

“According to the state’s fuzzy math their definition of ‘saving’ is already costing them an additional $986.86 a month to counter the side effects of a medication that has been proven not to work for me and would probably be viewed as ‘similarly effective’,” Phenix said.

“I do not want to start all over again,” she said. It took Phenix four years to figure out which medication was best for her.

“The current definition of medical necessity for Medicaid has worked for over 10 years, now the state wants to dictate my quality of life in order to save money,” Phenix said.

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Roucoulet, 39, said she wouldn’t be at the Legislative Office Building Thursday if it wasn’t for her power wheelchair. She said she owes her independence to the wheelchair, which allows her to live independently in her Hartford apartment.

Roucoulet has been living with multiple sclerosis for 20 years now. “If I didn’t have my wheelchair I’d end up at a nursing home,” she said.

Sheldon Toubman, an attorney with New Haven Legal Aid, said by changing the definition of medical necessity to say “reasonable and necessary” rather than the standard of “maintaining an optimal level of health” means the state Department of Social Services could restrict access to prescription drugs, medical equipment, dental care, mental health treatment, and medical tests.

This change also means a doctor will have to scientifically prove the treatment is necessary by submitting medical, peer-reviewed published papers to the HMO, Toubman said.

Jennifer Jaff, executive director of Advocacy for Patients with Chronic Illness Inc., said this places an “unrealistic” burden on doctors who are already receiving low reimbursements rates for their services. “People will not get the best treatment available to them,” she said.

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Rep. Peter Tercyak, D-New Britain, said by changing this definition the state may be saving money now, but will face “untold expenses in the future.” He said it could lead to increased emergency room visits, nursing home stays, and other issues that will decrease the quality of life for those living with chronic conditions.

The Democrat-controlled Appropriations Committee and Rell are estimating the state will save $4.5 million in 2010 and $9 million in 2011 by changing this definition.

Rep. John Geragosian, D-New Britain, who co-chairs the Appropriations Committee, said Thursday that while the state budget is still being negotiated, “it’s not likely” the proposed definition, which advocates say would guts its effectiveness, will be changed. He said Rell made a lot of devastating cuts to Medicaid services and many of them have been restored, but are still being examined as budget deliberations continue.

Toubman said Geragosian’s response is “extremely unfortunate.”

Click here to read the letter 41 advocacy groups supporting the current definition sent lawmakers.