SPRINGFIELD, Ill. (WCIA) – Marilyn Zydlo’s son Jimmy was diagnosed with stage three advanced Hodgkin’s lymphoma in 2020 and had to undergo twelve rounds of chemotherapy.

“It left him bedridden, extremely debilitated,” Zydlo said.”He had it every two weeks, and we had to undergo certain types of anti-nausea medicines to try and help him.”

But Zydlo, who is also the Illinois Region Dare to Dream ambassador with the Leukemia & Lymphoma Society (LLS), said they faced some hurdles getting him the treatment he needed. His insurance company had him take an alternative medication first. Then if that didn’t work he could take the medication his doctor prescribed him. This process is called step therapy.

“It’s just like this domino effect of this constant, ‘Why am I more worried about getting this authorization and approval from the insurance companies and the prescription plans and just doing what the doctor is telling us to do to help care for my son,’” Zydlo said.

Her son eventually got the medication he needed, halfway through his chemo treatment.

“It’s heartbreaking to watch your child suffer or your family member, whoever it is, because you can’t get the right medicine at the right time until the insurance companies decided you need the next medicine,” Zydlo said.

Jimmy is now in remission and Zydlo has taken her son’s story to the Capitol, joining others to call on lawmakers to pass a bill that would ban that process in Illinois.

“It’s very frustrating to have insurance companies dictate what we can and cannot prescribe to our patients,” Dr. Shikha Jain, a GI medical oncologist at the University of Illinois Cancer Center, said.

Jain said step therapy is an issue many physicians deal with on a regular basis.

“When insurance companies deny care or require you to go through step therapy, it often requires us to jump through numerous hoops that can then delay care ultimately to our patients, and also wastes a lot of time and add an increased administrative burden,” Jain said.

The effort to ban step therapy is part of Governor J.B. Pritzker’s Healthcare Protection Act aimed at making some major changes to the healthcare industry. The governor unveiled the proposal during his State of the State address in February.

“For far too long insurance companies and not doctors have been free to determine what treatment options patients should have and how quickly they can receive it,” Pritzker said during a press conference in Belleville Monday. “With this bill, we’re putting power back in the hands of doctors and patients.”

The bill passed out of the House last week with some bipartisan support and is now in the Senate for further consideration.

“Any improvements that we can make in the healthcare delivery system, to empower providers to create efficiencies to lift up our patients, it’s good for health care, it’s good for attracting and retaining talent in our communities, and it’s good for patients,” State Rep. Ryan Spain (R-Peoria), the deputy Republican leader in the House who voted for the bill, said in a press conference in Peoria on Monday.

In addition to banning step therapy, the measure would also require insurance companies to adopt definitions regarding medical necessity that are the same as the guidelines doctors use. It would also ban prior authorization for in-patient adult and child mental health services.

The proposal would also ban “junk insurance” plans, which aren’t required to follow standards laid out under the Affordable Care Act like covering people with preexisting conditions.

If the bill becomes law, Illinois would join twelve other states that already ban these kinds of plans.

Opponents of the bill, like health insurance companies, argue that by eliminating step therapies, costs could increase for people on their plans. Governor Pritzker’s team said this bill was written to keep costs down.