Bright, colorful, zest-for-life Amanda had been seeing a neurologist for pinched nerves, and none of the standard treatments were helping. This prompted a deeper look with x-rays, which revealed the source of her extreme and constant pain, multiple sclerosis (MS).
Like so many people diagnosed with a chronic, autoimmune condition, Amanda had no idea what MS was or what kind of treatment she’d need to manage it. She knew her life had changed, but she didn’t know how and to what extent.
The wrong treatment option
Treating MS, and other auto-immune conditions, is complex and often involves trying different medications until the right drug is identified for each individual patient. Amanda had to experience the downside of treatment — debilitating nausea, pain, and fatigue — with her very first drug.
“My first treatment was horrible with giving myself Rebif. It reminded me of MS daily,” she said. Rebif is a routinely recommended medication for newly diagnosed MS patients. The mechanisms of action are not well understood. It reduces disability by 30% compared to placebo.1
She hated the routine reminder of her disease and self-injecting medication. In addition, she felt unsafe being on her own. She wasn’t stable enough to live independently, a real challenge for such a vibrant person.
“I took myself off it,” Amanda said, describing the decision to stop treatment with Rebif. She tried to discuss alternatives with her doctor, but he didn’t want to pursue more aggressive treatment. “I wasn’t on anything for a year.”
MS is unfortunately a degenerative disease, and the time Amanda spent without medication could result in her condition worsening. But for her, the initial treatment she was prescribed was intolerable. Amanda was trapped in a difficult situation with her health on the line.
Finally, the right treatment option
Amanda worked up the courage to try new options at a treatment center in Jacksonville, Florida, a three-hour drive from her home in Mississippi.
Her new doctor recommended Ocrevus, an infused medication that decreases relapses 50% more than Rebif.2 Ocrevus is often used for highly active MS or for patients who have tried and failed other medicines.
The infusion treatment worked very well for Amanda. Her energy and vibrancy returned, improving her health and giving her loved ones a big sigh of relief. “She was ready to do whatever the world had for her to do,” Amanda’s mom said. “I’m so grateful for the infusion … because it just brought life back to my baby.”
Another great feature of Amanda’s infusion treatment is that she only has to receive infusions twice a year. Compared to injecting herself three times a week, infusions take up much less of her time and work so much better. “I don’t have to worry about taking a pill every day … my body is doing just that good with my infusions!” she said.
Fighting to stay on her treatment
While Amanda’s infusion treatment has been crucial to helping her live healthfully, she still faces difficulties in staying on it. Expense is the number one issue. Even though her infusions are only twice a year, her treatment still costs around $50,000. Amanda doesn’t make that much in a year, and even if she did, it’s illogical that she (or anyone else) could afford those costs.
“I receive a copay card to help pay,” she said. So far, that has been helping, but like many other infusion patients, Amanda is wary of policies that can affect her ability to pay.
One of those is called a “co-pay accumulator” policy. This insurance policy requires patients to pay their insurance deductible amount if the expenses that met the deductible were paid for by a copay card. So patients have to pay that deductible again (out of pocket) for their insurance to issue full coverage payments. Why does the insurance company get to set a policy where the deductible is paid twice?
IAF’s stance on co-pay accumulators is that they penalize patients financially and unfairly, making it harder to afford life-saving treatments. IAF is committed to providing resources to help Amanda, and other patients, fight back against these policies and assert their right to access treatment.