Skip to content
Although illnesses like ulcerative colitis and Crohn’s disease are life-changing, gastrointestinal diseases are largely invisible, with little social recognition or understanding. For underserved communities and those with reduced access to healthcare, the outcome can be even worse.
December 1–7 was Crohn’s and Colitis Awareness Week. To mark the event, The Color of Gastrointestinal Illness (COGI) reminds everyone of the importance of representation in gastrointestinal healthcare policy, advocacy, and clinical trial representation with the Real Picture of Health campaign.
The demographics of gastrointestinal disease
According to the Centers for Disease Control and Prevention (CDC), “U.S. prevalence of inflammatory bowel disease (IBD) is estimated between 2.4 and 3.1 million, with differing burden across groups.” While the prevalence is typically highest among non-Hispanic, white populations, they are also present in BIPOC populations.
Unfortunately, according to a study published in the National Library of Medicine, compared to their non-Hispanic, white counterparts, BIPOC patients reported:
- more difficulties accessing IBD specialists (26% vs 11%);
- poor symptom control (35% vs 18%);
- more negative impact on employment (50% vs 33%);
- worse financial stability (53% vs 32%); and,
- more problems finding social/emotional support for IBD (64% vs 37%).
Additionally, “BIPOC patients utilized emergency department services more often (42% vs 22%, reported higher concern scores related to IBD medication (17.1 vs 14.9), and worried more about medication harm (19.5% vs 17.7%),” the study observed.
It is paramount that many of the barriers to access be addressed for these growing populations. But what are some of the biggest burdens that BIPOC IBD populations face? Bio.News partnered with COGI to explore patient stories and the policy priorities needed to help them.
Step therapy and non-medical switching
Step therapy can be devastating for severe IBD patients. As Bio.News reported, step therapy is “the process of having to take a cheaper (possibly less effective or even ineffective) drug before being moved to a more expensive (and possibly more effective) option,” if they can move to that option at all. For severe IBD patients, such policies can be dangerous.
“It took years of trial and error of me trying different medications to find what worked for me,” explains Tionna Forchion, a COGI Ambassador. Finally, she found a medication that worked for her and was able to take it without issue for two years. However, her insurer later required her to take a cheaper, less effective option.
A Real Picture of Health: Tionna Forchion
“Basically, insurance companies are able to maximize the profits by switching the patients to a medication that will cost them less money. They didn’t take into consideration that my doctor said that the medication was stabilizing my condition,” Forchion explains. “It kind of made me feel like my life didn’t matter.”
Forchion switched to the new medication only to prove it didn’t work.
“I was weak every day,” she says. “I couldn’t even sometimes do the simple things like getting up and taking a shower because I couldn’t get what I needed. As a patient, these are people’s livelihoods we’re talking about here.”
This is why COGI advocates for the passage of the Safe Step Act, a bipartisan bill that would establish common sense guidelines for appealing step therapy protocols under ERISA (a group health insurance plan that’s covered by the Employee Retirement Income Security Act).
“Step therapy is one of the many ‘utilization management’ or ‘cost-shifting’ tactics employed by third parties to shift cost away from themselves and to the patient, which delays appropriate treatment, increases patient out-of-pocket costs, and drives a wedge between a patient and their health care provider’s decision-making,” states COGI.
In line with legislation curbing step therapy programs, COGI more broadly advocates against non-medical switching, a healthcare insurance policy that opts to switch patients to cheaper options, regardless of the advice of a patient’s doctor.
“Patients who are medically stable of a course of treatment should be allowed to continue unless there is a medical reason to change their treatment,” states COGI. “We oppose the switching of stable patients from treatment courses for non-medically necessary reasons, as it is both unethical and violates the standard of care. All treatment decisions should remain between the patient and prescribing provider.”
What’s causing high out-of-pocket costs?
Cost-shifting tactics like step therapy are one of the many things contributing to the high out-of-pocket costs that many IBD patients face. Yet, in the case of Joshua Denton, another COGI Ambassador, the insurance company’s use of copay accumulator programs also contributed to high out-of-pocket costs.
A Real Picture of Health: Joshua Denton
Copay accumulator programs take the value of the manufacturer’s copay assistance and apply it each time the prescription is filled. However, they do not add that value toward the enrollee’s deductible or out-of-pocket maximum. This tactic makes patients responsible for the entire deductible and cost-sharing amount once their manufacturer copay assistance runs out. As a result, the patient is no longer able to afford their medication and may either reduce or discontinue their medicine entirely.
When Denton turned 25, he needed his own health insurance. “I went through my employer,” he recalls, “which only offered high-deductible insurance policies, [with] the same medication that I’ve been paying $20–25 now costing upwards of $600 a month for a 30-day supply.”
It was a cost increase he could not afford. He had to start cutting corners in order to find a tenuous balance between getting by and not getting too sick.
“That included me cutting the recommended dosage in half,” he explains. “I remember I went maybe about 2-3 weeks without taking my medicine because I was waiting for my paycheck to come, and that was some of the most painful experiences of my adult life. Ultimately, it felt punitive. It felt like, Hey, I’m doing everything I’m supposed to do. I went to college, I have a job. I’m paying for healthcare. So why can’t I actually afford medication for a condition that I never actually wanted to be diagnosed with?”
To offset cost-sharing requirements set by insurers for prescription medicines, many pharmaceutical companies offer programs that assist patients with their out-of-pocket costs, including deductibles and co-pays. As Denton explains, such programs helped for a bit. But once those coupons ran out, he found himself financially underwater.
“The different resources and supplemental aid to help with medication, I think, is very hit or miss,” he says. “There can sometimes be prescription-related coupons that will lessen the cost out of pocket. But then you find yourself–once that coupon expires–a month or two or three months later, still having to pay whatever that balloon cost is going to be. Those programs don’t always cover a deductible. That deductible can range anywhere from $500 to thousands of dollars.”
To address these issues, COGI advocates for the introduction of legislation that would alleviate the burden on patients using prescription-related coupons by preventing insurers from adopting discriminatory cost-shifting tactics such as copay accumulator programs.
“These higher out-of-pocket costs can make important, life altering treatment out of reach for many people managing serious chronic disease,” COGI states.
More specifically, COGI advocates for the HELP Copays Act, a bipartisan bill that would require health plans to count the value of copay assistance towards patient cost-sharing requirements.
As COGI explains: “Many GI patients use co-pay assistance, such as co-pay cards or manufacturer coupons, to pay for their life-saving medications. PMBs and insurers increasingly use co-pay accumulator programs to prevent such assistance from counting towards patient cost-sharing, such as their deductible or annual out-of-pocket maximum. As a result, patients may struggle to afford and adhere to their medications as insurers and PBMs seek to shift more cost-sharing responsibilities to the patient.”
