Illinois: Provide care for Complex Unnamed and Rare Illnesses

Illinois: Provide care for Complex Unnamed and Rare Illnesses

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Maria Pollock started this petition to Illinois Health Care Availability and Accessibility Committee and

Dear Ms. Flowers,

I am outraged. A friend was referred to Rheumatology for help managing Ehlers-Danlos-Syndrome (diagnosed by a geneticist) and assessing some specific joint issues they were having with their neck. They called for an appointment, and were told Rheumatology at RUSH University Chicago will not see EDS patients. At all. They refused to make an appointment, even with a referral. Does that seem like a strange policy to anyone else?

I am outraged. My friend's daughter was denied a referral to her existing psychotherapist. Without that referral the therapist would not be able bill insurance and denied her the appointment. A few days later the daughter attempted suicide. Her mother is legally blind and has Charcot-Marie-Tooth disease.

My insurance has "adjusted" my specialist's bill to what they deem "reasonable and customary". They do not take in account that rare complex and unnamed disorders consume unreasonable and uncustomary time and resources of a medical provider. This practice makes it unattractive for doctors to study and become proficient in the treatment of rare complex and unknown disorders.

Please help Illinois patients with complex health issues who are denied appointments, care, medication and research because it is not cost effective to establish and provide it for a handful of patients.

Please consider a Patient Compensation Fund (PCF) to aid patients in these situations. E.g. Wisconsin is a state that has a state administered fund. Doctors pay into the PCF to lower their malpractice liability. The state uses tax dollars for this fund to make sure that the BURDEN of healthcare for rare unnamed and complex disorders is equally shared.

End Denials,

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