$24,000 a month to combat cancer: Bucks County man takes up fight for affordable care

When Michael Riotto was diagnosed with multiple myeloma in July 2011, he was told he'd have about five years to live.

Eleven years later, he's still going strong. "I'm happy to be here every day of my life," said the Jamison resident.

Riotto, 62, credits his doctors at Penn Medicine, and the regimen of 26 pills and nutritional supplements he takes daily for keeping his rare type of blood cancer at bay. He's been in remission for a few years now and serves as a coach for patients newly diagnosed. He's helped 11 of them navigate their new normal and keep their spirits up as they overcome the shock of their diagnosis and prepare for the inevitable battles ahead with both their disease and the insurance industry.

A married father of two children, he worked as a store manager for Boscov's ― a job he loved ― until the illness forced him to retire in 2017. The disease affects bone marrow and he's had multiple fractures. His doctor told him he would live longer if he wasn't working because he could rest his body more when it needed it.

Now he not only volunteers to help other patients, he's also joined a group called Patients Rising Now that is helping patients with chronic or rare conditions get access to the lifesaving drugs they need and their doctors want them to have. And that the drugs can be made available at reasonable costs.

In June, he participated in a "We the Patients Fly In" sponsored by Patients Rising Now to bring chronically ill people and their caregivers to Washington to meet with members of Congress about the main issues affecting their health care.

Riotto said the premiere chemo pill for myeloma cost $12,000 for a month's supply when he was first diagnosed and is now about $24,000 a month. Even with good medical insurance, his expenses for the first several years before he went into remission were about $12,000 a year. With those kind of costs, many things were cut from the family budget, including vacations.

But for other people, the disease can cause bankruptcy. When he started working with fellow patients, they asked him: "'How do I afford this? My (monthly) co-pay is $1,800. Do I pay my mortgage/ my light bill, eat food or get my medicine.'"

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"It's wrong that people have to choose between their mortgage and their medicine," he said. "It's just wrong."

Patients Rising Founder Terry Wilcox said she and her husband, Jonathan, started the nonprofit and its advocacy arm, Patients Rising Now, after realizing the complexity of trying to help her father navigate the health care system when he was ill.

"My dad was going through enormous frustration," she said. Then her stepmom developed Alzheimer's disease and she went through the whole process again.

She said the group met with members of the Congressional Energy and Commerce and Ways & Means committees to discuss ways to streamline insurance coverage. "Prior authorizations take a long time ... We believe health care should be transparent."

According to the Patient Rising website, "Terry and her team engage the patient community, along with physicians, health policy experts and allied health care professions, to develop realistic, solution-oriented discussions so those with life-threatening and chronic diseases will have a voice in shaping policies that will improve access to quality care."

The group is working on lobbying for bills like the Safe Step Act that has been introduced in both the House (HR 2163) and Senate (S. 464) and has the support of both Democratic Pennsylvania Sen. Bob Casey and Republican Bucks County Congressman Brian Fitzpatrick. Both Wilcox and Riotto said the bill is designed to help patients get the exact medicine their doctor wants them to take quicker.

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What typically happens with rare or hard-to-treat illnesses, Riotto said, is that a doctor will prescribe a medicine but the insurance company will at first only pay for a different, less expensive medicine and the person must try that "in steps" for a few times to see if that works before the insurer will pay for what the doctor originally ordered.

In some situations, this can prolong the period the person is going without the medication the doctor believes would best help them. If they need to change insurance carriers in the meantime, the whole process can begin again. For a patient with a serious condition, the delay in getting the right drug can be life threatening.

"In some cases, you could literally die because you're going through this step therapy. Time may not be on your side."

Another issue is medical imaging.

Since he's had several fractures, Riotto said he goes for frequent MRIs. If he goes to an MRI location that an insurer covers, but the test isn't as complete as the one his doctors want, they may ask that he get the test repeated at Penn, which adds to the expense the insurer pays as well as taking more time. "The doctor should be able to order whatever test he wants," he said, and the patient should be able to get the test done where the doctor wants it done.

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And a third factor, he said, is the amount of time doctors have to spend on insurance issues rather than treating their patients. In a five day week, he said it could amount to two days' time spent on administrative work to try to help patients get insurance coverage for the drugs they need.

Riotto said that Fitzpatrick has been supportive of legislation to help the chronically ill. The group hopes it can persuade other members of Congress to act so that the legislation can be passed. Among the bills proposed in the House are the Help Ensure Lower Patient Copays Act (H.R. 5801) and the Improving Senior Timely Access to Care Act (H.R. 3173) which would ensure that the prior authorizations that Medicare Advantage patients need to obtain care are not delayed. This bill is also before the Senate as S.3018.

Riotto got involved with health care lobbying first in Pennsylvania on an issue called "oral parity."

Medical insurance would pay for intravenous chemotherapy but when the chemo drugs were developed that could be taken orally in a pill, insurance companies made people pay for them out of their prescription plans. He worked with the state legislature to make sure there was oral parity for chemotherapy in Pennsylvania but then found out that most insurance plans follow national guidelines that still don't offer that parity.

The Patients Rising website offers information for patients and caregivers to understand the insurance process while the Patients Rising Now group also sponsors Advocacy Master Classes which take place two-hours a week for 15 weeks for patients, caregivers and citizens who want to learn how to become advocates for better patient care. The online program is free for the 50 people who are accepted into each course.

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At the "fly in," Riotto said he was so lucky to meet patients from across the country and he realized how fortunate he was to live here near Philadelphia with such good medical facilities. He said Patients Rising Now is trying to ensure there's equal access for patients from all regions and all backgrounds to good medical care that won't cause them and their families financial hardships.

"We're trying to break down some of those barriers that prevent people from getting access," he said. "Equal access for all is so important."

This article originally appeared on Bucks County Courier Times: Bucks County man helps cancer patients tackle high medical bills