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Friday, April 26, 2024

Medical equipment, preferred insulin not entirely covered by insurance for some students, two UC Davis graduate students say

Some UC Davis students are paying high costs out of pocket or accumulating thousands of dollars worth of debt for their medications and medical equipment 

By MARGO ROSENBAUM — campus@theaggie.org

This is the second installation of The California Aggie’s two-part series on the struggles of students, faculty and staff in receiving coverage for some medications and medical equipment by UC health insurance plans.

Victoria Watson-Zink, a Ph.D. candidate in the Department of Evolution and Ecology at UC Davis, was diagnosed with type 1 diabetes in seventh grade and has used Novolog insulin and an insulin pump almost ever since. Recently, Watson-Zink has not been able to get this brand of insulin approved through her student insurance plan. 

When Jonathan Eisen, a professor with appointments in the UC Davis Department of Evolution and Ecology, the Genome Center and the Department of Medical Microbiology and Immunology, tweeted about his difficulties with his UC insurance plan last month, Watson-Zink shared her experiences on the Twitter thread. 

“I’ve been using Novolog since middle school but all of a sudden, no matter what I do, I can’t get Novolog approved under the UCD health insurance,” Watson-Zink said in a tweet. “Had to switch to Humalog on a day when I was on my last few units of Novolog — NOT OK!” 

OptumRx is the pharmacy benefit manager for the UC Student Health Insurance Plan (UC SHIP) and manages their prescription drug benefits and costs. The UC SHIP plan has not been changed recently and OptumRx has been the pharmacy benefit manager for the plan since the 2015-16 academic year, according to ​​Margaret Trout, the executive director of health and wellness for Student Health and Counseling Services (SHCS). 

The recent switch to Navitus Health Solutions as the pharmacy benefit manager only impacted UC retirees and employees, such as Eisen, on Anthem Blue Cross preferred provider organization (PPO) plans — and did not impact students on UC SHIP — but some students, including Watson-Zink, have also faced their own challenges with coverage of medications and medical equipment. 

Watson-Zink said she has always experienced “a lot of difficulty” with getting Novolog insulin covered by her graduate student insurance, and since the beginning of 2022, she cannot get it covered at all, and is not entirely sure why.

Novolog is listed in the OptumRx formulary as needing a prior authorization, or more information from the prescriber for coverage, according to Trout and Todd Atwood, the administrative services manager for SHCS. They said UC SHIP has worked successfully with students to complete the prior authorization process.

Watson-Zink said that her doctor was previously able to write a prior authorization for her Novolog prescription, and within a couple of days, she was usually able to fill it. Yet, since January, she said that no matter what her doctor does, she cannot get Novolog covered. Watson-Zink said she was told she must have a documented severe allergy to the generic forms of insulin for her prior authorization to be approved.

“They’re not going to cover the one that I’ve been using since seventh grade, which is difficult because all insulins aren’t created equal [and] all bodies don’t react to insulin in the same way,” Watson-Zink said. 

UC SHIP is administered through the UC Office of the President (UCOP) with UC Health providing medical oversight. According to Trout and Atwood, the UC SHIP plan provides “comprehensive” prescription, medical, vision and dental coverage to UC students and eligible dependents. All UC campuses, except UC Berkeley, use UC SHIP with an average enrollment of approximately 135,000 members, as of fall 2021. 

UC SHIP is made to meet the needs of students, Trout and Atwood said. The UC SHIP Executive Oversight Board (EOB) governs the plan, and student voting members decide on the plan’s design and benefit changes. Trout and Atwood stated that students are the most important members of the EOB. 

“UC SHIP is created for students and run by students!” Trout said via email.

Students and professors say they are unsatisfied with UC SHIP

Yet, not all students are content with the care they receive from UC SHIP. 

Some students have to pay high costs for their medications and medical equipment or do not have access to all of the medications and care they need, according to Elisabeth Forrestel, an assistant professor in the Department of Viticulture and Enology at UC Davis, who was diagnosed with type 1 diabetes when she was a 1-year-old.

“Students have not had access to all the medications they need,” Forrestel said. 

With a son who was also diagnosed with type 1 diabetes, Forrestel understands firsthand the high cost of insulin, which has tripled in the past decade in the U.S.

“Insulin is the poster child for a medication that you need to live,” Forrestel said.

Watson-Zink uses an insulin pump and said she recently received a bill for $800 for a three months supply of sensors for the pump. She said she was sent another bill for $250 for the sets that deliver the insulin, which is “a lot of money on a grad student stipend.” Per month, she spends on average about $1,080 on medications, equipment and care for her mental and physical health needs.

“I’m still paying out significant out-of-pocket expenses for my supplies and the surgeries I’ve had and mental health insurance,” Watson-Zink said in an interview with The Aggie. “It’s just been really expensive and it’s not ideal.”

As a result of her difficulties in receiving coverage for Novolog, Watson-Zink had to switch to Humalog insulin in January. 

“There’s actually a reason why I was on Novolog, and why I’ve been on Novolog, and just switching it because this insurance doesn’t want to cover it, for reasons that are beyond my understanding, is outrageous,” Watson-Zink said.

Watson-Zink said her glycemic control has “taken a bit of a dip” since her body is not used to the new brand of insulin. While she does not have a documented severe allergy to Humalog, she said it takes longer to work and is not as effective, so she has to take more of it.

“Yeah [my glycemic control] has definitely taken a dive since switching but they said they won’t cover Novolog again unless I have a ‘documented severe allergy’… but suboptimal glycemic control is fine with them,” she said in a tweet on Eisen’s thread.

Watson-Zink said she has several pre-existing conditions in addition to type 1 diabetes, including congenital hydrocephalus, a neurological condition that affects the structure of her brain and has led to three brain surgeries in the past two years. As a result, Watson-Zink said she requires “a lot of support in terms of health care.”

“I think my time at UC Davis has been difficult just because I haven’t always felt like I’ve gotten the kind of insurance support that I’d need to survive with these conditions on my own, because I don’t have familial support for dealing with these conditions and so just doing it on the graduate student stipend has been very difficult,” she said.

Watson-Zink said that managing her expenses to maintain her physical and mental health on a graduate student stipend has been a challenge. After her grandmother passed away from COVID-19 last September, she required “significant mental health support” to get back on track and ready to finish her Ph.D. 

“It’s been very difficult for me to try to coordinate care for my physical health and my mental health just based on the graduate student stipend and the insurance, because the insurance doesn’t cover enough, and I think it’s just ridiculous that we have to pay so much out of pocket to have these supplies covered when it’s essential to my survival,” she said.

Jennifer Statham, the director of communications at OptumRx, said she understands the financial difficulties people face with chronic medical conditions, like type 1 diabetes. She said pharmacy benefit managers like OptumRx work to provide access to affordable medication. OptumRx negotiates lower costs of prescriptions and helps to determine a medication’s placement on the formulary. 

OptumRx, which is the pharmacy benefit manager for UC SHIP, is unable to provide any insight or look into insulin medication without a signed Health Insurance Portability and Accountability Act (HIPAA) form for OptumRx members in reference, Statham said. 

Kelsey Brewer, a Ph.D. candidate in the soils and biogeochemistry graduate group, conducts research on the agroecosystem functionality of integrated crop-livestock management (Kelsey Brewer / Courtesy).

Increasing debts for student’s durable medical equipment

Other graduate students said they have faced similar challenges with getting their medications and medical equipment covered. Kelsey Brewer, a Ph.D. candidate in the soils and biogeochemistry graduate group, has type 1 diabetes and is hypoglycemic resistant, meaning he does not experience physical indicators when he has low blood sugar. As a result, he is reliant on a continuous glucose monitor, which he said the university does not substantially cover. 

Brewer commented on Eisen’s Twitter thread, saying that his student insurance has not covered his insulin for over two years, nor his continuous glucose monitor. Brewer graduated with a B.S. in plant sciences from UC Davis in 2016 and said he has seen declines in the quality of student health insurance. He used to be on Novolog, which stopped being covered for him about three and a half years ago. 

Now, Brewer is on Lantus insulin, which the student health insurance covers, and a generic form of Novolog insulin, he said. Lantus is a sub-optimal form of insulin for him, and he has a “substantial copay” of about $150 out of pocket every month, he says. 

Since April 2021, Brewer says he has accumulated $8,500 in medical debt for his continuous glucose monitor, which is considered a durable medical device and is not fully covered by his insurance. 

“By the time I finish my program, I will be lucky if I don’t have $12,000 in medical debt, and the only reason I stayed is because I see the finish line and I need this degree to lift myself out of poverty,” Brewer said.

Brewer said he had to advocate for himself to qualify for the continuous glucose monitor.

“​​I had an incident when I was camping in which I almost died from low blood sugar and it was like a huge wake-up call,” he said. “That was really the only thing that got me qualified, which is very frustrating.”

Trout and Atwood of SHCS said that glucose monitors are covered as durable medical equipment at 80% after a deductible is met under UC SHIP. Trout and Atwood said that Anthem is the medical benefits provider for UC SHIP and covers durable medical equipment needs.

In Brewer’s experience, he said that UC SHIP has not covered his continuous glucose monitor at 80% and has not offered him any help in getting it covered. Between January to March 2021, Brewer said he ordered his continuous glucose monitor directly from Dexcom, the manufacturer of continuous glucose monitors.

Dexcom has since outsourced to Edgepark, which bills the monitor as a durable medical equipment device instead of a prescription, which has resulted in Brewer’s medical bill spiking, he said. When Brewer went through Dexcom, they billed his insurance as a prescription, which has a different coverage under UC SHIP.

With in-network durable medical equipment, Brewer said, the UC will pay 80% after a $100 deductible, but when it is out of network then the UC only pays 60% after a $200 deductible. Further, out-of-network durable medical equipment has an “out of pocket maximum” of $6,000 per benefit year. Brewer said this means that he has to pay up to $6,000 per year before UC SHIP would cover 100% of his durable medical equipment.

“It honestly brings me to tears; it’s really sad,” he said. “I tried to work with the insurance at UC Davis […] I tried to work with Edgepark and Dexcom to bill it as a prescription rather than a durable medical equipment device, and nobody does anything about it.”

Brewer said he is not sure if Dexcom was considered in-network with UC SHIP, but his out-of-pocket expenses were much lower for those initial three months in 2021. Dexcom was contacted for comment by The Aggie but had not responded as of April 5. 

Dexcom used to act as a pharmacy, but now they do not process their own orders. The company’s website states: “Dexcom is no longer processing or fulfilling Dexcom [continuous glucose monitor] orders directly online. If you’re in need of immediate supplies, please order through your assigned medical supplier or pharmacy.”

Trout said she cannot confirm any student claims history because that is protected health information, but she provided insight into the durable medical equipment coverage process. She said that supplies for people with diabetes fall under durable medical equipment in the UC SHIP benefit plan but there is also coverage for these items as a prescription under OptumRx. Coverage will depend on whether students purchase supplies from a durable medical distributor or a pharmacy. 

For durable medical equipment, she said the best coverage in-network is 80%

“They can shop for the supplier or pharmacy they like best, but always be sure to ask if they are in-network to get the best coverage,” Trout said via email.

Trout said there are other Dexcom suppliers that are in-network for UC SHIP, such as Bedard Pharmacy, which she said she called and confirmed that they are in-network with the Anthem PPO plan, which is UC SHIP’s plan.

For pharmacy, the highest copay a student might have for a 30-day supply is $40. If the continuous glucose monitor can be found at either a durable medical equipment supplier or a pharmacy, Trout said she recommends purchasing continuous glucose monitors through a supplier that is in-network and bills as durable medical equipment if the price is less than $200.

“I would encourage any student that finds their diabetic supplies are suddenly out-of-network to contact us for help in switching to an in-network supplier or pharmacy,” Trout said via email. 

Graduate student stipends not sufficient to cover medical bills

On average, graduate students in the U.S. earn $36,390 annually, according to the most recent data from the Bureau of Labor Statistics. With rent, transportation, food and other basic living expenses, some students do not have a significant amount of funds that can go toward high medical bills.

“Once a month, we get a check from whatever appointment you have, that is used to cover most of your living expenses,” Watson-Zink said. 

UC graduate students are paid through a number of appointments, such as tutors, teaching assistants, researchers and fellowships. Pay for UC graduate students varies on their position and “step,” or level of research as set by their department,” Brewer said. 

Soils and biogeochemistry graduate students like Brewer are paid at Step VII, which amounts to $68,492 a year, until they take a qualifying exam, which moves them from being a Ph.D. student to a Ph.D. candidate. Brewer said the exam is usually done around the end of a student’s second year, and can only be taken if the student has completed all of their classes.

After passing the exam, soils and biogeochemistry Ph.D. candidates are paid at Step VIII, which the UC Davis Graduate Studies website says is $73,941 per year. Brewer said, however, that graduate students are usually paid 50% of the full amount of their step.

In Brewer’s case, he gets paid 46.9% of the $73,941 annual pay, which means that his department is expecting that he works 19 hours a week, he said. In reality, he said he works around 40. 

“If it were to be paid 100%, the pay is actually ok,” Brewer said.

Brewer said the 50% pay levels are usually justified by saying students are taking classes in addition to working, but after completion of a qualifying exam, Brewer said graduate students have completed all of their classes and are no longer considered students, but instead as candidates who work at the university. 

“I haven’t taken a class at UC Davis in over two and a half years,” Brewer said. 

Both Brewer and Watson-Zink attribute some of their challenges with medical expenses to their low pay as graduate students. Brewer said the UC could greater support graduate students with disabilities and from marginalized backgrounds by increasing their pay.

“It wouldn’t be an issue here if I had more money to pay this,” Brewer said.

When Watson-Zink was on the base graduate student stipend, she said it was challenging to have enough money for food, rent, car insurance, bills and her medications. She used the Pantry in the past when it was “very difficult” to have enough money for medication and food. 

“Being able to have enough to eat every month was a struggle that I was facing,” she said. 

She talked to her advisor and told him about her “unsustainable” situation with low pay and high out-of-pocket expenses for her medications and equipment. Luckily, she said he was able to find external sources of funding for her. 

“It’s not sustainable to be paying almost $1,000 out of pocket for mental and physical health expenses on the graduate student stipend with such low care or coverage from health insurance,” Watson-Zink said.

Health care challenges for people with chronic conditions 

In Forrestel’s experience, health care throughout the U.S. does not cover enough expenses for people with chronic conditions. Forrestel does not use health care through UC Davis; she uses Health Net which she gets through her husband’s insurance. 

“I was paying thousands and thousands of dollars a year to have health care, just for my medical supplies and then on top of it, my son’s medical supplies,” she said.

After hearing from students about their struggles to get insulin and other medical equipment covered by their student insurance plans, Forrestel said she recently elevated the issue to Helene Dillard, the dean of the College of Agricultural and Environmental Sciences.

“If you don’t know what it’s like to have a chronic condition where you can’t get help and health care, there’s generally not awareness and it’s a huge equity [and] inclusion issue,” Forrestel said. “If you can’t afford health care, if you can’t afford to pay for medications you need to live, that’s a huge problem.”

Dillard said via email that as soon as her office was made aware of the issue, they “immediately” started working with the central campus human resources department and health services to alert UCOP.

“We will continue to work closely with campus leadership to ensure our students, faculty, and staff receive the care they need,” Dillard said via email.

Trout and Atwood said they encourage students who are having issues with insurance coverage to contact them or others who are a part of Insurance Services. They said they would work with students to ensure that they can access the benefits of UC SHIP. 

Students, even those not enrolled in UC SHIP, can access the Health Equity Fund, which is supported by the SHCS Health Fee Oversight Committee and UC SHIP, if they have difficulty paying for health care, according to Trout and Atwood. 

Brewer said he emailed a representative multiple times about the Health Equity Fund but received no response.

Graphic by Kellie Lu / The Aggie

Health care said to be part of systemic bias in system of academia

Disabilities are one of the biggest barriers to the attrition rate of people moving on to different phases of academia, Forrestel said. 

Research shows that students with disabilities have lower graduation and retention rates in college than people without disabilities. Students with disabilities are underrepresented among Ph.D. graduates in fields associated with science, technology, engineering and math (STEM). In the U.S., 25% of adults have a disability, but those with impaired hearing or vision earned 4% of Ph.D.s in STEM, and those with a mobility limitation earned 1% of STEM Ph.D.s.

According to a 2016 study, 1 in 433 people under the age of 20 have diabetes and over 53,000 students with type 1 diabetes attended college across the U.S. that year. 

The Student Disability Center (SDC) at UC Davis regularly accommodates students with diabetes, according to Jennifer Billeci, the director of the center. While disability type is recorded by the SDC, Billeci said she does not have a number specifically for diabetes. Billeci said she encourages anyone who is encountering problems to check in with their specialist. 

“Typically, students are very satisfied with services,” Billeci said via email. 

Brewer said it is “morally” reprehensible for the university to not take care of people with chronic illnesses or to let them go into the kind of debt he is experiencing. A lot of the change related to diversity, equity and inclusion that he has seen at the UC is “very surface level” and “not leading to substantial changes for marginalized communities.”

“I’ve tried to agitate and disrupt around this a lot because it’s it’s an accessibility issue, it’s a [diversity, equity and inclusion] issue, it is ableist, and there have been moments in which I’ve had to almost make a choice to like quit my program in order to not go this deep into debt,” he said. 

“Diabetes distress,” which is a negative emotional reaction to the experience of living with a chronic condition requiring 24/7 attention and lifestyle changes, is high among college students, and can negatively affect their quality of life, according to a 2019 study from Ohio University

“I have diabetes, and so I have to have a sense of ownership over that and a sense of responsibility, but it should be really noted, and I think this is the case with a ton of chronic illnesses, but diabetes is not a joke,” Brewer said. “It’s like an extreme, extreme amount of stress and concentration on a day-to-day basis.”

In managing his expenses and care for his diabetes, in addition to being a Ph.D. student, Brewer said it can be overwhelming. 

“The stress of managing diabetes alone, in addition to the stressors of our normal lives, means that when I have all these things associated with medical gatekeeping or blocking me from access, or all of the financials associated with it, that it just becomes extremely overwhelming to have access issues and resource issues associated with this thing that already is an all-consuming management consideration for my day-to-day life,” he said. 

Because diabetes takes “really strict management,” Forrestel said there need to be greater integrated mental health resources for students with chronic illnesses like diabetes.

“It’s 100% discrimination, saying that someone who isn’t healthy doesn’t deserve to be here, at Davis,” she said.

Coming from a single-parent household, Watson-Zink said that inequities in health insurance illustrate systemic bias in the system of academia. She said she conversed with her advisor about these challenges. 

“We’re thinking that there might be systemic bias in how that plan works and who it’s made for and how it doesn’t cover all the needs that students have nowadays, especially if they’re coming from backgrounds that are historically excluded in academia,” Watson-Zink said.

Watson-Zink is graduating from UC Davis at the end of May and is starting a postdoctoral program at Stanford University. She is just trying to “ride out the clock” until she can change to Stanford’s health care, she said. Watson-Zink will be given the same health insurance options as Stanford employees, which she said seem to be “a lot more comprehensive” and “not so much out of pocket” in comparison to her current student health insurance. 

“[UC SHIP] is really great for students who have no existing medical conditions, who have financial support from their parents or some sort of other resources that they use, but for students who don’t have resources like that, it’s just not enough coverage,” Watson-Zink said. “It’s not enough care for students.” 

Written by: Margo Rosenbaum — campus@theaggie.org

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