How the Senate’s insulin cap rejection affects S.D. diabetes patients

Insulin
Insulin(KTTC)
Published: Aug. 8, 2022 at 11:05 PM CDT
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SIOUX FALLS, S.D. (Dakota News Now) - Jenny Eggers couldn’t hold back the tears.

The usually upbeat mother of three felt the strain of being the parent of a child with Type 1 Diabetes when asked about the burden of affording insulin — the drug needed to treat 35 million American diabetes patients like her 12-year-old daughter Kinley Tjeersma so they can live without numerous medical troubles.

Eggers called the financial toll of insulin “substantial” and almost impossible to account for in her family budget, since the expense and the amount her insurance covers for it changes constantly.

One vial of Humalog, which cost $21 in 1999, ran for $332 in 2019, reflecting a price increase of more than 1000% over 20 years.

”It’s scary, because they need this to survive,” said Eggers.

“It’s not something that you can get over the counter, and it’s their li......”

Jenny couldn’t finish the word “livelihood” because talking about being a prisoner to insulin and its constantly-changing costs caused Jenny to choke up and unsuccessfully hold back tears before regrouping herself.

“It’s a roller coaster.”

The ride for Eggers and caretakers like her would soon be a lot smoother had the U.S. Senate cast enough “yes” votes to pass an amendment that would have put a $35 per month cap on insulin costs for Americans who have private health insurance. It was one of several amendments that were voted down as part of the sweeping Inflation Reduction Act, which passed on Vice President Kamala Harris’s deciding vote to break a 50-50 tie.

Not enough Republicans said “yes” for the 60 votes needed for the insulin cap, although seven Senators from the GOP did vote in vote in favor, joining all 50 Democrats.

Republicans left in the amendment that capped insulin costs at $2,000 per year for Medicare patients, which significantly helps Americans age 65 and over who rely on the medicine and qualify for the federal health insurance, which also covers people under 65 with certain disabilities.

Senate Minority Whip John Thune (R-SD) told reporters on Sunday morning that Democrats knew well before the vote that the Senate parliamentarian (rules advisor) ruled a cap on insulin prices in the private market a violation of a Senate rule because it would set prices in the commercial market and therefore couldn’t pass with a simple majority vote.

“They added it back in and basically, you know, wanted to tempt us to, I guess, vote against it,” Thune said, while taking aim at Democrats for “overruling the parliamentarian.”

Thune said the effort to overturn the parliamentarian undermined the integrity of Senate procedure and Senate rules.

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Reaction from diabetes organizations

The end result was what mattered most to JDRF — Juvenile Diabetes Research Foundation — one of the most prominent non-profit organizations that help with the funding for continued diabetes treatment and research.

“Insulin access is a matter of life or death for people with T1D, which is why it is unconscionable that 43 Members of the U.S. Senate voted today to strip away provisions from the budget bill to cap the out-of-pocket costs of insulin for those with commercial health insurance,” the organization’s official statement in response to the Inflation Reduction Act said.

“JDRF applauds the passage of the Inflation Reduction Act but will continue to urge the Senate to move swiftly to take up the INSULIN Act to ensure everyone has access to affordable insulin.”

South Dakota Diabetes Coalition vice president Len Wobbenberg, a physician assistant in Huron, said he was “obviously” in favor of the cap “so I can better serve my patients and better serve their families and communities.”

Most diabetes patients Wobbenberg sees spend about $100 to nearly $600 per month out-of-pocket, so the cap at $35 for those who are under 65 and have private insurance would have made a “drastic impact” had the measure passed, Wobbenberg said.

“We see a lot of people who are insured, under-insured and uninsured,” Wobbenberg said. “A lot of the patients that are under-insured or uninsured have a very difficult time affording medications, let alone just being able to afford to see me. A lot of these people have to decide if they are going to see me and pay for their medications, or put food on the table. It’s heartbreaking.”

And when they choose food?

“(Some) wind up in my clinic because they were in the emergency room or the hospital with a very bad ulcer,” Wobbenberg said.

The ulcers lead to infections. The infections lead to amputations of toes or entire portions of feet.

“I see it all the time,” Wobbenberg said. “This is absolutely devastating for these families. And these aren’t people that are very old, necessarily, either. These are people in their 30′s and 40′s that have little kids to take care of.”

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Kinks in Type 1 Kids’ lives

That is not a quandary Tjeersma and her family have been in. Eggers said they have “good” private health insurance.

But that doesn’t mean the burden of inconsistent bills hasn’t been taxing on both budget and emotions. The family likely would have qualified for the $35 per month cap.

What breaks Eggers’ heart just as much is what those who can’t afford good insurance, or any insurance at all, go through.

Those patients would likely not have qualified for the cap.

As a “T1″ parent, Eggers has learned plenty about the process of treating the disease, and about what other parents pay for and go through.

There are two types of insulin most patients take. Humulin works in the short-term by helping blood sugar (glucose) get into cells so your body can use it for energy. Lantus is the long-term version.

Eggers said many lower-income and lesser-insured patients can only afford Humulin, meaning they run the risk of not sustaining their glucose levels for long periods of time, which raises the chances of medical maladies.

“And they’re using the big, long needles” with vials of insulin to deliver insulin into their body, as opposed to diabetes “pens,” which are much shorter and thinner needles that are less painful and more convenient than syringes and vials.

The pens also make dosage amounts more consistent and reliable than needle-and-vial method.

Tjeersma, Eggers’ daughter, uses the pens. But that doesn’t mean life hasn’t been much harder since she was diagnosed with diabetes in November after going through a long spell of feeling ill.

There’s the multiple-times-a-day of pricking her fingers with the pens and drawing blood, checking for her glucose level. Modern technology allows phones of both the patient and/or its caretaker(s) to alert them when levels are alarmingly low or high. Low blood sugar can lead to blurred vision, difficulty concentrating, confused thinking, slurred speech, numbness, and drowsiness. If blood glucose stays low for too long, starving the brain of glucose, it may lead to seizures, coma, and very rarely death.

High blood sugar leads to damage of large (macrovascular) and small (microvascular) blood vessels, which can lead to heart attack, stroke, and problems with the kidneys, eyes, gums, feet and nerves.

For Tjeersma, one of the hardest parts of living with T1 has been giving up some food she and most kids love — the ones high in carbs like potato chips and high in fat like ice cream. Her parents have learned to find “protein chips” and gluten-free ice cream and other low-fat and low-carb “clean” foods, but it has taken a while to get used to, and not just for Tjeersma.

The clean foods are more expensive, and her parents are left with deciding on depriving only Tjeersma of the tasty regular stuff, or making her not feel left out by having everyone eat only “clean” foods. The latter option puts a dent in the family budget.

And then, there is how Tjeersma spends her time in school.

”More of the time, I go to the nurse’s office than sit in some of my classes because I have low blood sugars,” Tjeersma said.

On this day at the Sioux Empire Fair, Kinley’s blood sugar level was 75 — a “good” glucose number — shortly before she made her cat show presentation. She’s developed deft enough public speaking skills to be crowned the Miss Preteen Mount Rushmore after she was interviewed on “character, confidence, community.” Her vision for bettering her community by spreading awareness about Type 1 Diabetes earned her the right to represent South Dakota at the USA Ambassador Pageant in Florida.

Tjeersma planned on using that national event as a platform to raise awareness for T1, and funds for diabetes research. But in a twist of cruel irony, the nature of the disease kept her at home and made her forfeit the honor of representing the state to someone else.

“She was very nervous about the whole trip,” Eggers said. “A lot of tears were shed.”

Said Tjeersma: “It’s so hard to bring all your diabetes stuff with you” on an airplane, Kinley said. “I was pretty relieved I didn’t have to go through all that with traveling.”

Eggers hopes this story will fill that void and at help South Dakotans understand both the suffering it puts patients and their caretakers through, and the ways they can get financial aid.

“Our concern is that the state alone could be such an advocate for helping these people get what they need, and other states would catch on to what were doing,” Eggers said.

“We could see a trend in the Type 1 communities. They could have peace getting the care that they need, too. I’m really hopeful that things will take a different avenue than where they’re headed now.”

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Financial aid for insulin you can get now and in the future

There are avenues for low-income, under-insured, and uninsured diabetes patients at the moment, despite the “monthly cap” rejection in the Senate.

Wobbenberg’s employer, Horizon Health Clinic, offers health and financial aid services in Huron and 22 other rural communities in South Dakota.

Both Horizon and city-owned Falls Community Health in Sioux Falls provided the “340B program where clinics pair with pharmacies to help patients with their insulin costs, depending on their income level.

“So, we might have a medication, for instance, that might cost three, four, five hundred dollars, cash price, and we’re able to get that at a fraction of the cost, and put that in the hands of a patient that really needs it, that might have that very high co-pay or that might have a very high cash price,” Wobbenberg said.

For more information on 340B and if you qualify, click here > https://www.hrsa.gov/opa

Horizon does a lot of its own “patient assistance,” as well, Wobbenberg said. If a person meets a certain poverty level, they can fill out a form — with the assistance of doctors, nurses, and physician assistants at the clinic.

One such program is the “Sliding Fee Program.” To qualify, you must be a Horizon patient. For more information, click here > https://www.horizonhealthcare.org/sliding-fee/

One Horizon program is called “direct relief,” which is exclusive to federally-qualified health centers.

“Pharmacies all across the nation have medications that are soon-to-be-expired, and they have a huge surplus of medications that would otherwise go to waste,” Wobbenberg said. “So, what they do is they donate these medications to different clinics (like Horizon).

“This isn’t a fix-all by any means, but sometimes we get lucky and we get some medicines that are very helpful to patients, especially expensive medications for people that have diabetes.”

By 2024, a project called “Civica” will combat the nationwide insulin affordability crisis by manufacturing and distributing “low-cost biosimilar options for three of the most-prescribed insulins: glargine (Lantus®), lispro (Humalog®), and aspart (Novolog®). Civica will enable anyone to purchase insulin at no more than $30/vial or $55/box of five pens, regardless of insurance status.”

The project is a creation of Civica Rx, which, according to its website, is a nonprofit generic drug company founded in 2018 by national philanthropies and leading U.S. health systems to reduce and prevent drug shortages in the United States and the price spikes that can accompany them.

“Civica’s mission is to make quality generic medicines accessible and affordable to everyone,” its website also reads.

JDRF has endorsed Civica “in conjunction with leading partners in diabetes, advocacy, and healthcare.”

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