Inspired by teacher whose spouse struggled to get critical treatment, students take up fight for equitable access to medications
PONTIAC — Shortages of important drugs in the treatment of several of the most serious illnesses have been a concern across the U.S. and Michigan in particular. A 2023 report from Michigan Public Radio and other news outlets highlighted the fact that health care providers were especially concerned about the availability of drugs that treat cancer.
The Michigan Health and Hospital Association (MHA) says the shortage of two key chemotherapy drugs, cisplatin and carboplatin, has become critical across the country and in every region of Michigan.
Katrina Palushaj, a longtime computer science teacher at Notre Dame Preparatory in Pontiac, is witness to the real-life effects of the situation. Her husband was diagnosed with lung cancer in 2021.
"It has been an up-and-down road," Palushaj said. "My husband is taking a pill for targeted therapy and in 2023, he needed treatment in addition to the medication he already was taking. But last year, he was denied that treatment because it was only being administered to earlier stage patients with stage 1 or 2 cancer."
This meant that her husband’s scheduled treatments were postponed until further notice, according to Palushaj. At the time, she added, because of the shortage, there was no guarantee when his treatments would be restarted and whether there would be any priority for him and others in his situation to receive the rest of their treatments.
Not enough profit
But the shortages are not from insurance companies reluctant to pay for care. They are not from highly complex, designer drugs that are difficult to produce. The medications are, in fact, simple and generic and can be produced by any licensed pharmaceutical manufacturer.
They also are easy to produce in quantity. In fact, a vial of carboplatin costs approximately $15, which therein lies the problem. The purchase price is so low that manufacturers don't make as much money from drugs such as carboplatin as they can from maintenance drugs that people have to take regularly for years.
The consequences are real: cancer patients are increasingly dying from the lack of these simple and inexpensive products.
Enter Notre Dame Prep's Michigan Youth in Government (MYIG) team, who have taken up their teacher and her husband's plight in earnest.
After learning from LeAnne Schmidt, Notre Dame Prep's debate and forensics coach and a teacher in the middle school, about Palushaj's ongoing and frustrating fight to get life-saving drugs for her husband, now-2024 Notre Dame Prep graduate Peyton Von Bernthal rallied fellow members of the school's MYIG delegation: freshmen Mary Galle, Brandon Jones, Nella Kaminskas and Anna Kafarski, junior Alessa Atallah, and fellow 2024 graduates Laura Schmidt and Michael Kenny.
Von Bernthal was so steadfast in pursuing a remedy for such an overarching injustice in the health care system that the future University of Michigan student decided to write her own bill during a recent MYIG conference in honor of the Palushaj family.
"As a presiding officer, I was given the opportunity to attend the Michigan Youth In Government conference twice this year," Von Bernthal said. "This meant that I had more than one opportunity to present this important issue to the conference."
Bill passes, medicine becomes available
The bill saw passionate debate in favor of the proposal at the MYIG conference, including from the Notre Dame Prep delegation, and it was passed unanimously throughout all chambers and signed into law by Kenny, who was serving as the youth governor — all on the first day of the conference, which is very rare.
Von Bernthal couldn't wait to relay the news to Palushaj.
"I just wanted to take the time to let you know that not only does our Notre Dame Prep delegation support you and your family, but the youth across the entire state of Michigan do as well," she told Palushaj. "We worked hard and are advocating for you and your husband."
But that wasn't the end of it. Not by far.
Notre Dame Prep's MYIG team immediately went to work to lobby Michigan's actual legislators in Lansing on their passed MYIG bill in an effort to get it introduced and passed on the real Capitol floor.
As a result, in early June, the packet of passed MYIG legislation will be shared with Lt. Gov. Garlin Gilchrist and Speaker of the House Joe Tate at a legislators’ breakfast in Lansing for consideration as active legislation for the Michigan House and Senate to advance.
Meanwhile, Notre Dame Prep junior Atallah had forwarded to state legislators in her district a website created by Schmidt that detailed the issues surrounding the drug shortages.
It had the intended effect.
"By God's grace, I received a phone call saying my husband will, in fact, get his treatment," Palushaj said. “And while we were blessed to receive the medication, we were still concerned about all the other cancer patients in the same boat."
Palushaj said her mission is to get the actual legislation passed in Lansing.
‘Good chance’ of passing the 'real' bill
"It is so great to know that our kids took the lead on this important issue and that it could potentially change thousands of cancer patients' lives," she said. "I am so proud of our students and pray the bill continues and passes in the Michigan government."
Schmidt believes that Von Bernthal's bill actually has a good chance of making the cut.
"While it certainly is a debatable topic, the preponderance of support lies in the fact that the current situation 'blacklists' stage 3 and stage 4 cancer patients and effectively sentences them to death by withholding treatment because the odds are against them," Schmidt said. "Heaven help us if hospitals start to mirror Las Vegas and its casinos in dispensing care."
She added whether or not it is fostered in Michigan's legislature or gets the votes, the more people who know about the situation, the better.
"Medical care choices should rest with the patient on advice of a licensed doctor," she said. "Any interference undermines the sanctity of life, which we have already seen happening in Michigan in the past year. The bottom line is that this Catholic and Marist community and students like Von Bernthal and the rest of the MYIG team support life."
This article was first published on the website of Notre Dame Preparatory High School in Pontiac and is republished with permission.
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