Behind The Scenes: Step Therapy for Interstitial Cystitis

Banner saying “behind the scenes: medical trial and error” “step therapy and medical neglect”

As a part of the continuing series exploring the behind the scenes aspects of the trial and error experience, this week we’re taking a look behind the curtain at step therapy.

This is a process that is regularly advocated against and insurance companies are constantly pushing for patients to go through rigorous and counterproductive therapies before approving medications and sometimes even surgeries. In theory, step therapy can make some sense. Typically when trialing drugs you start with those that are less invasive and will do less damage to your body. You want to rule out that they don’t work before trying something more invasive or more expensive. As patients, we often have a similar approach in the beginning, but this gets complicated by science and insurance policies that don’t take into account the individual approaches to treatment often needed.

This is often due to cost of the medication, or because a drug is newer to the market and cost negotiations haven’t taken place yet. And in other cases, it’s because insurance companies are just assholes.

Step therapy isn’t limited to just medications and you may be required to go through various non-pharmaceutical therapy programs before being approved for the medicine you and your doctor believe is best for you.

Although I’ve been through this with migraine, I wanted to highlight this experience that I have witnessed over the last year with my mom, Debby, as she’s been advocating to get better treatment for her interstitial cystitis that has been extremely complicated by medical negligence paired with step therapy.

After managing interstitial cystitis (IC) for twenty years, Debby would find herself caught up in her own battle with trial and error for medications. Her condition is characterized as a chronic inflammation of one’s bladder, further complicated by lesions inside the bladder. Management is often centered around reducing frequency and urgency of having to pee. The condition can be made worse by being unable to relieve your bladder, in turn causing painful flares. Reducing urgency is one way to prevent flares, while reducing frequency helps patients go about their day without the added anxiety of needing to access a bathroom.

Debby was faced with stopping one of her long term medications for prevention, with the new knowledge of potential side effects that could rapidly reduce her quality of life including blindness and macular degeneration. A few months later, she would discontinue her remaining as needed pain medication due to the potential for liver and kidney damage.

Debby was left with a few options for procedures (surgery to remove lesions and quarterly DMSO instillations) that made her life more comfortable, but even these options were dissipating. The surgeries to cauterize the painful lesions are not a long term option for management due to the amount of scar tissue left behind which over time reduces the size of the bladder. The DMSO works to help reduce pain and dissolve scar tissue.

These medical changes coincided closely with a move and having to get set up with a new doctor. Debby had previously been under the care of a world renowned educator, practicing out of a teaching hospital, who was actively pursuing the best and most innovative treatments while ensuring that she was well read in on the science behind her condition and any developments in treatments.

With the pandemic, new care was tricky as initial consults were done via telehealth. The new practice offered a different type of bladder instillation from the DMSO, and Debby was able to try this. Typically bladder instillations are painful and the pain lasts for a few days. With DMSO, after the first few days, she got to experience extended periods of relief. The new treatment was actually easier and quicker than DMSO, but after the days passed, no extended period of relief ever came.

This caused disruption at home because the stress of the move, the pandemic, and seeking new care exacerbated the pain, and having a new treatment not work was disheartening. Debby wanted to continue her DMSO, and the new doctor’s office assured her this was something they could do there, however they didn’t have the authority to order the medication so the responsibility fell on Debby to acquire it and bring it in herself.

Acquiring the DMSO was another hoop she had to jump through that showed a clear disregard for her as a patient. The doctor wouldn’t write a prescription as one isn’t technically required and it can be purchased on Amazon. However, no information on item number or seller was provided to make sure the correct kind of DMSO was ordered.

The DMSO that was acquired was pure and the office performed the instillation without diluting it, causing an instant and severe burning reaction. Again, this doctor’s office insisted that it was on Debby to figure it out and wouldn’t so much as call the previous doctor’s office to get information on proper dilution and mixing ingredients required to perform the procedure properly. Getting back on track with her DMSO treatments became a trial and error in and of itself as the new doctor’s office failed to provide adequate patient support at the expense of Debby’s health.

Debby only met the doctor of this practice once. She took a very hands off approach, performed an exam and then left the room assuming no further discussion of care and patient history was necessary. After the horrible experience with being unable to get the proper formula and forcing Debby to perform much of the legwork herself, this office decided it simply wasn’t a service they could offer.

As this process continued, she was mostly working with the physicians assistant, who introduced her to a new medication that she thought would help with the frequency aspect of IC. The physicians assist had a much different attitude than the doctor, but the experience thus far made it more difficult to work towards a cohesive care plan.

The assistant was able to provide samples of a new medication which demonstrated it was an effective treatment option, however once submitted as a prescription the new and effective treatment had to temporarily be abandoned. The already frustrating path to care, was now complicated by insurance requiring Debby go through physical therapy first.

The physical therapy itself was designed to strengthen her pelvic floor muscles, theoretically providing some of the same results as the medication. Because of the nature of the condition, physical therapy often had to be postponed because it would exacerbate symptoms, further elongating the process.

Debby had to demonstrate that the physical therapy wouldn’t provide the same control over frequency and urgency as the more costly medication. The therapy did not meet any of it’s goals, allowing insurance to move forward with the approval process for the medication.

As physical therapy was happening, Debby switched her DMSO instillations to a local hospital where the care she received was the most compassionate and caring experience she’d encountered. The first instillation wasn’t perfect, but the nurses took her concerns with the previous treatment experience and worked overtime to find a solution. They partnered up with their pharmacist who was responsible for creating the proper ratio of medication, and they reached out to the previous pharmacy at the teaching hospital to get the exact formula and collaborate to learn exactly how the procedure needed to be done for it to be successful. They got it right and helped to get Debby back on track with trusting assistants and nurses who would be managing her care going forward.

The medical negligence and total disinterest in quality of care hindered Debby’s quality of life after her move for over four months. The interruption of the new treatment brought on by insurance requirements would steal five more month’s of Debby’s life before she could have access to the medication she already knew was effective. Throughout this time, Debby saw an increase in frequency often negatively impacting her quality of sleep.

Despite now having having the new medication, her doctor’s remain completely unaware of the impact on her quality of life during this because there simply is no follow up. The neglect from the doctor and dismissive attitude only compound this. This furthers the cycle of doctor’s disconnect with how burdensome the trial and error periods for medications can be on the patient’s day to day life and exemplifies that doctor’s are often contributing factors to the pain and suffering that occurs during this time period.


Next up in this series, you’ll have the chance to read the first hand account of Emily’s where she describes her experience going through therapies for Vestibular Migraine while her quality of life was further disrupted by a host of immune irregularities that made the trial and error process incredibly complicated.

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